Recovering from Hepatitis C and its treatment - an update
Hey y'all, thought I'd stop by and give a holler. Things seems a little different here lately, lots more subdivisions in the hepatitis forums (with hep A, hep B, automimmune etc). Some other new features seem to be added to the board, which I think are stupid. But whatever, don’t want to be too negative.
Anyway, just thought I'd give an update of how it feels to recover from both hepatitis C and its treatment for those either pondering treatment or currently undergoing it. A quick refresher on my stats: 42 yo, male, geno 1a, VL~1.5 million IU/ml, F1 fibrosis, infected from 1983 to 2006, enrolled in Vertex VX950/telaprevir Prove 1 trial in summer of 2006, received SOC+VX950, got bad VX950 rash about 7 weeks in (stopped VX early), eventually underwent 41 weeks of treatment. Went UND by week 2 and have remained UND all the way through and 6 months post tx - SVR.
So what's it feel like to have had HCV for so long, to have been successfully treated and to now finally be cured of HCV after having the virus for almost 25 years? Before answering that let me first preface what I’m about to say by stating the following: For one thing let me say that not everyone has symptoms, or at least no "apparent" symptoms, of having hep C. Over the years I’ve spoken to many people with HCV who have told me that they never knew they had it and that it didn't really bother them. The non-symptomatic folks are the lucky ones, because many other people do have symptoms. I’m one of those people and always had symptoms of HCV. The main symptom I had was chronic fatigue. Crushing fatigue at times that would weigh on me like a ton of bricks. This fatigue was my near constant companion throughout my late teens (infected at 17), all through my 20's, 30's and into my early 40's. So going into treatment I had high hopes, albeit very cautionary and measured, I would be successfully treated…and with any luck finally offload at least some of the fatigue that has plagued me for nearly a quarter century.
So what HAS happened after being treated and ridding myself of the virus? Well, a lot of things. Let me speak firstly of physical well being after treatment. As the drugs wore off late last summer (stopped tx in early June ’07), my body was a wreck. My cholesterol was very high, I was weak, totally out of shape and would sweat and huff and puff with the slightest exertion. Initially I was somewhat underweight as I was during treatment. I started treatment at 185lbs, dropped to about 168lbs during treatment, and then finished off about 175lbs. During that time my body composition changed though, I lost muscle mass and gained body fat around my belly. They call it “intra-abdominal” fat. It’s where fat collects around your organs and trunk and it’s especially unhealthy for you. Well that’s what seemed to happen to me. And it’s not surprising, I didn’t exercise a whit all during my treatment and I ate the worst foods imaginable – ice cream, hamburgers, pizza, sugary sodas, the works. It’s not that I’m really lazy or dietetically stupid, I just couldn’t exercise when I was “drug sick” in treatment. I also couldn’t eat properly and could only eat what tasted good. Hard to explain, but eating properly during treatment was out of the question for me. I planned on correcting for it later after recovering.
Anyway, a few months off the drugs and my weight ballooned right up to 207lbs, which for me is the heaviest I’ve ever been in my whole life. I’ve always been tall and thin and in pretty good shape. But my appetite was voracious and I had cravings for all sorts of things, including heavy, high calorie beers (which some of you may recall me talking about). Somehow coming off the drugs had ramped up my appetite and it seemed as if my metabolism had been thrown grossly out of whack. I figured the interferon had tweaked my thyroid functions in a manner that caused overeating and weight gain. The normal regulatory functions that governed appetite and weight gain/loss seemed wildly out of balance. This state of affairs and my new 207lb fatty body continued into the winter of ’07. I knew I had to do something about it, I couldn’t continue on like that so as my new year’s resolution I decided to get off my fat *** and take action. I stopped all beer drinking and ate a decent diet, I rode my bike every day. Usually this is all it would take for me to lose weight very quickly. But nothing doing. I rode and rode and rode my bike like a madman almost every day and I strictly avoided all beer and ate healthy foods. Weeks and weeks went by and I could not lose any weight. I might lose a few pounds and feel like I was making progress, but then a few more pounds would seemingly magically glue itself right back on again. It was as if 207lbs was my new weight. It was as if my endocrine system had drawn a new line in the sand, and that line was the “207th lb parallel” (just like 185lbs had previously been for many years for me).
I was getting worried, I didn’t want to be fat and I certainly didn’t want the problems of diabetes and high blood pressure that came with it. I just couldn’t believe that after all my hard work exercising and eating a fairly strict diet (with NO beer), that I couldn’t at least break into the 190’s. Something was definitely wrong, there had clearly been some sort of fundamental shift in my metabolic rate, almost certainly brought on by 41 weeks of interferon - there was simply no way around it. So out of desperation I decided to try a low carb diet while maintaining a high activity rate. I fairly strictly avoided starches and carbs, although I would still have a small bowl of cereal in the morning and would occasionally have a little bread here and there. But in general my diet, which was normally pretty high in carbs, was drastically curtailed into low carb-land. Every day I would go for long walks with a 30lb pack on my back walking up and down the hills of San Diego. Then on weekends I’d go to the beach at Torrey Pines and walk and walk and walk. Walk past the naked people at Black’s Beach, walk past the hang glider dudes soaring over the cliffs, walk onward to LaJolla, turn around and come back and do it all over again. And guess what? BINGO 17 pounds flew off, and I dropped right back down to 190lbs within just a few weeks. The low carb diet along with heavy activity did it, but I’m pretty sure it was mostly curtailing carbohydrates that was responsible (something I’ve never tried before).
Anyway, sorry to be too detailed oriented and drone on about this, but I’m sure that others have struggled (or will struggle) with this sorta thing after their own treatment ends. So I wanted to go into detail as to what works for weight management. But that was a few months ago and now my weight is pretty close to my original weight of 185lbs. I’d actually like to keep it closer to 190lbs because I feel and look a little better at that weight. And the strange thing is, is that now I can eat carbs again and even drink a few beers here and there and my weight stays where it is now. It was as if my metabolism needed a kick of a sort to reset it back to where it was before treatment. Which brings me to my point (yes I do have one ;-) – interferon based treatment tweaks your system. It alters your metabolic rate and can shift the way you feel about food (as in how much you crave it and what types of food you want) and the way your body both takes on weight and sheds weight. If you plan interferon based treatment soon, expect these effects and watch out for its effects after the shootin’ match is over. (cont...)
Right now my story is still being written, but I can see now how both the immune system and the various metabolic functions that are associated with the thyroid are all tied together and they are significantly altered during treatment (by necessity). Their functions continue to be altered and to undulate long after stopping the drugs. I believe now that as I approach my 1 year post tx anniversary that my body is still adjusting and resetting itself to life without synthetic interferon, life without ribavirin, life without telaprevir (which provoked a nasty allergic-immunological response) and life without prednisone and solumedrol (immunosuppressants). I imagine my immune system as a heavy weight on a spring that has been jerked and put into motion during treatment. And the weight has been continuously going up and down, oscillating since stopping treatment, with the oscillations slowly damping out over time. But while it is oscillating, there are times when my weight will go up and then come down and my immune sensitivity will likewise go up and down until sometime in the not so far off future things will finally settle down into a new and calm center. A new center that will be different than what it was before I started treatment. My immune system is forever changed never to be like it was when I was actively infected again.
Which brings me to a few more observations about the post tx immune system. I’ve noticed several interesting things about my body since starting and stopping treatment. Firstly is that my tonsils have been pretty well constantly swelled up and puffy since I was infected with HCV (back in ’83). I’m almost certain my tonsils have been swelled up all that time because of the ongoing, constant battle within my body fighting HCV. One thing I noticed after starting treatment is that my tonsils immediately went “flat.” They simply deflated, they were no longer puffy or enlarged. It was a stark and remarkable transition, especially considering how well acquainted I had become with my puffy tonsils over the decades. I took this as one of many good signs that the drugs I was taking at the time were doing their job (which they certainly were, I would find out later) – and I think I was right. My tonsils had deflated because the virus was no longer having its way inside my body and my immune system was no longer struggling to remove it. One thing’s for sure, my tonsils deflated very soon after taking the antiviral drugs. My tonsils remained deflated all during treatment. My tonsils have remained “deflated” since that time and to this very day.
Another immunological observation is that I do not seem to have allergies like I once did. I never had severe allergies when I had HCV, nor did I regularly take medicine for allergies. But when I had HCV I almost always had a constant stuffiness or nasal congestion of one sort or another. My eyes were also often slightly bloodshot and red, as if I had a tinge of hayfever all the time. This almost constant congestion and bloodshot eye thing I think now was a partial byproduct of the HCV infection. Not the HCV per se, but my body’s immunological response to the HCV. Looking back on it, I strongly suspect there was a sort of quasi-autoimmune syndrome going on that was a byproduct of my body’s global fight with HCV. I had the nasal stuffiness and bloodshot eyes common to those with colds or flus. Except this cold and flu didn’t go away in nearly 25 years. But guess what? During treatment I noticed that much of the stuffiness went away. I wasn’t sure if this was because of the drying/dehydrating effects of the drugs, or maybe it was for some other reason. But now almost a year off the drugs, my stuffiness is still gone (for the most part). The redness in my eyes seems mostly gone too now (although it is pollen season here now). Again, it’s as if my immune system has finally “stood down” for the first time in a quarter century. I breathe clearer and my eyes are clearer, and I think it’s because the HCV is gone and my immune system is no longer struggling with it. I’m almost certain of it.
Yet another immunological observation, the biggest one of all - is that my old friend chronic fatigue is all but gone. Yes, successful HCV treatment seems to have eradicated my longstanding problem with chronic fatigue. I just don’t get tired for no reason like I used to. And when I do get tired there’s almost always a good reason why I am tired. I get tired when I don’t get 8 hours of sleep a day. I get tired when I physically work hard all day or go for long hikes or exerting bike rides. I get tired when there is a reason to be tired. I don’t get tired when there is no reason to be tired like I did before when I had HCV. Generally I’m more alert, more awake and more alive. I’m better, and I absolutely don’t think there is any question whatsoever why I feel better. The HCV is gone, my body’s immune system is no longer fighting it. Since it’s no longer fighting it I don’t feel sick anymore. Plus my liver’s functions are all working better now too. My blood sugar is being better regulated now, and all that black magic biochemical mojo that the liver is responsible for within my body (that I don’t understand) is working better – which makes me feel better. Also, and not to be gross, but I notice my stools are darker than they used to be and my digestion in general is better. I’m fairly certain this is because bile is flowing more freely within my digestive tract, which enhances digestion and the absorption of nutrients, again making me feel better. Also, I seem to be almost immune to hangovers. My liver processes alcohol so well I almost have trouble getting drunk anymore. Before when I had HCV, I would often start feeling sick after more than 3 beers. I can drink a lot more than that with impunity now. Not that I’m bragging or condoning this type of behavior, I’m just describing it to demonstrate how well my liver now works. Also, my urine seems to be lighter than it was before. I often used to have “dark urine” before when I had HCV. And it smelled funny sometimes too. But now my pee seems to be a healthy light yellow color and it doesn’t smell funny anymore. Well, at least it just smells and looks like good ole’ regular pee now, I’ll say that anyway. ;-)
(cont...) Oh and another thing that was an unexpected benefit from being cured that ties into the chronic fatigue is that I used to suffer, is getting rid of the intermittent sleep apnea I experienced for many years. I would snore quite often because of the nasal congestion I mentioned earlier (which was being caused by the constant immune response to HCV). If you can’t breathe through your nose, you’ll snore. And it can cause great difficulties for you because you can’t breath properly during sleep, which can tremendously exacerbate chronic fatigue (or outright cause it). Another compounding factor for sleep apnea is having swollen tonsils (again as previously mentioned and caused by an ongoing HCV infection), which serves to block the airway and again cause/exacerbate sleep apnea, which again in turn exacerbates chronic fatigue (along with causing high blood pressure and other descending maladies). Well, now that my nasal passages are largely clear and now that my tonsils have gone flat (and have stayed flat), I can breath much more easily now while sleeping. I don’t snore anymore, or at least not nearly as much as I used to. This means that I sleep well almost every night, which obviously helps me to feel much better than I did when HCV was actively running through my veins. Oh yeah, and of course my old friend chronic insomnia that I used to have when I had HCV, has largely disappeared. I never really knew why I had insomnia when I had HCV, but I certainly had it. I would feel tired all day with the fatigue, wanting nothing more than to crash and go to sleep, only later to stay up all night staring at the ceiling in a daze. All I could figure is that it had something to do with my blood sugar being out of whack from the HCV tweaking my liver. But I never really knew what the mechanism was. But now, generally speaking I just don’t have trouble nodding off when I need to anymore. Generally speaking, I lay down, get tired and go to sleep – it’s that simple. I’m still not a morning person though, unfortunately. ;-)
Another little something I noticed is that my eyes seem to be whiter than they were when I had HCV. And my girlfriend noticed this too and mentioned it. When I had HCV, my eyes at times had a certain…not yellowness to them, but a sort of “dingy cast” to them, as if they were very mildly jaundiced. This was something no one ever really mentioned or said anything to me about, but I definitely noticed it when looking at the whites of my eyes in the mirror. So did my girlfriend. But now I look at the whites of my eyes and I swear they are WHITER, whiter than I’ve seen them…well, in 25 years. Another sign of being cured of HCV, the eyes really are not only a window to the soul, but a window into your health as well.
So you see all of these things are interrelated, they’re all connected with one another. And as I’ve slowly come out of this post HCV/tx fog in the past year, I’ve seen all of these things come to pass. And I’ve learned tremendously from it by observing what’s been happening with my body and how things have changed since that first day I sat down at the clinic to be injected with interferon and to swallow that first handful of those nasty pills. And this story is still being written, true “normalcy” still escapes me, but I can see as time moves forward it’ll be within my grasp. My point to anyone reading this that’s pondering treatment, is that there IS light on the other side. Things can be better, things can get better. Hepatitis C can be beaten, your life can be better without it. I used to read these posts on the internet, always longing to be cured. Longing to be better, longing for relief from my symptoms. Never knowing if it was within my grasp or if it would ever really happen. Well, it did for me. And it can for you too, believe me. Whatever you do keep the faith, better times are ahead. You CAN beat hepatitis C. You CAN get better – BELIEVE IT!
Ok, that’s enough blab for one post. Maybe next time we can discuss the mental aspect of treatment and recovery, but suffice to say this is enough for today. Sorry for the long windedness!
It was great to see your name and see how things have turned out for you. No wonder you've been away so long...that was a lot of exercise! I was always just a quiet reader of your very interesting posts. I've missed them.
Hey good to see ya. Really glad to know that you are recovering. I've wondered what you've been up to but figured that you were doing well, very well.
I'm surprised at just how much time has slipped past since I remember your last posts. We were having some hot fun in the lonnnnnnng political thread or b1tching about the new forum format; good times. : )
Thanks for checking in. It's always great to hear about people doing well post TX and with their shiney new SVR.
Someday If I ever shake this virus I'd enjoy having a beer myself and evicerating a few marmots; party's at your place. : )
Really good to Ya. You have been missed.
Strange you know a lot of what you said about feeling better, no more fatigue or insomnia and the whites of your eyes happened to me after my last Tx.
OK it didnt work but it sure as hell did something. Didnt get the weight gain though.
Anyway all the best, and thanks for dropping in
Glad to see you post again and read that you were as determined after TX as you were during TX to beat this virus and become healthy by your own choices which have paid off in the long run. It is a long journey and many paths in which we must travel to find utopia in ones own life as we press forward in the post TX world, Congrats!
ps, you're post were always very long winded but very interesting, informative and captivating to say the least, lol
Congrats on SVR. I wish the SOC which I am now on included the VX950. I've heard many say they have reached SVR while on that therapy. I could handle the rash and the more severe sx knowing my chances or reaching SVR increase.. Advanced liver disease (stage 3/4) gives a whole new meaning to tx or at least it does in my case. For now, just have to wait and see Wishing all the best and thank you for sharing.
Great post, very helpful indeed and well appreciated. many things you touched on are exactly what I feel. you have almost made my mind up to treat. i may take my doc up on his offer for me to participate in a boceprevir or talaprevir trial. Thanks and please keep us up to date with post tx life.
Meet - oh I am so glad to see you writing and to read how you're doing. You really just made my day it's just so great.
both of the below statements I call the "recovery side effects" oh boy you speak the truth! Intra-abdominal that is what it is...hum. I guess that is so. I have to get rid of it but boy wasn't it just unbelievable how HUNGRY how absolutely and totally STARVING you felt about eating? I was like I had been in the desert for years and just wanted all the food that I knew wasn't good for me but I couldn't stop. I guess after 72 weeks I felt I earned it but....yes intra-ab that is me!
They call it “intra-abdominal” fat. It’s where fat collects around your organs and trunk and it’s especially unhealthy for you.
and "But my appetite was voracious and I had cravings for all sorts of things"
I hope that as your journey continues you get healthier and healthier until we see you in the Mr. America pagent! You have made the time here for me so much a better place and as we celebrate SVR together I say CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I've missed you meet it's so good to see you again!!!!!!!!
Good to hear from you and very happy you're doing so well. I can relate to the "belly" issue which became quite prominent (pun intended) a month or so after tx when the weight came on. Much better now, but still a factor 2 years post treatment. My doc and I attribute it to changes in the metabolic syndrome from treatment. Are you pre-tx belly flat, or still working on it? Other than metabolic changes, I also have a few other theories ranging from IBS (difficult to dx), to older age, to some sort of localized reaction to the belly injections of interferon, the latter having absolutely no scientific basis as far as I know.
PS Can you send some of the xtra energy my way :) I was suffered from what might be considered bouts of chronic fatigue prior to treatment that may have been caused by the virus. Unfortunatly, like many, I didn't find any difference in fatigue levels post treatment even with SVR.
Great Post!!! Thanks for the details on your recovery and all the observed changes!
I also suffered from decades of nasal stuffiness and 'allergy' type symptoms, and for a long time had to use nasal sprays, which made things even worse. I had these problems right up to tx, and after tx, for over four years now, bingo they are gone! No congestion or stuffiness.
The odd thing, which I have mentioned before is that my family members have all developed these same symptoms over the years, which are year round, and unresponsive to treatment. They all test negative for HCV on the standard antibody tests, but I still am concerned that exposure to me may have caused some localized cellular immune reaction which is manifested in the nasal tract and eyes and throat. I have observed the same exact phenomenon with several previous partners, over twenty years ago, before I even knew I had HCV! They developed extreme nasal congestion, and eye allergies during the relationship. I really wonder what that is about???
The belly fat, weight change issues for me were identical to yours, and I am currently wrestling with finding an effective diet and exercise regime that actually works. The metabolism certainly does change after tx, and many other internal systemic functions do as well. Some for the better some for the worse.
Congratulations on your SVR, and your success with the weight and diet. Great that you have no fatigue!!!! Way to go!
I wonder if anyone else has experienced the nasal congestion symptom, or throat clearing, eye allergy, after contracting HCV???? Also, (I know I have asked this before, please no bricks and bats again) but has anyone noticed a similar appearance of these symptoms in partners, family members, etc? The changes in my family members' nasal, throat and eye function have all been distinct in their start, and have persisted throughout the year, for quite awhile now....even with medical treatment by specialized doctors. I don't bring up my HCV concern with the doctors, since I know they will just look at me like I have two heads. Any other observations or comments are appreciated!
That was an excellent post!! Very informative and a great read thank you for that. Congrats on your success.
I also have had nasal congestion for years and often wondered if there was any correlation to the HCV infection. I had often noticed that the fatigue and congestion would sometimes seem to be linked together. I also snore like Hell sometimes. My wife has actually left the room during the night on occasion because I snored so bad. I would wake up absolutely exhausted in the morning. It is interesting to read other peoples posts and see common problems you always wondered about and then find out you are not alone.
I can also relate to the eyes as I often look in the mirror and see my eyes all red, glassy, and dull looking. I would ask my wife but she can't ever tell but to me it is as obvious as the nose on my face. Especially when I do not feel well.
I also have a taste for the "Big Beers" as I used to homebrew. I have had to pretty much leave them alone and have not brewed in a few years. When I would allow myself to have a couple I would feel like SH!# for the next few days so I just leave it all alone now. Damn shame because I really do love a Good Craft Beer.
Thanks very much for the kind thoughts everyone, great to see everyone again too. Sounds like most everyone is doing pretty good and that's great to hear. We gotta keep at it until every single one of us has our SVR. Some of you had specific questions/comments I'll try and address:
jim - I wouldn't necessarily say that I'm "pre-tx belly fat", but more or less I'm back where I started (other than being almost 2 years older). I never did have 6 pack abs or anything, but I certainly wasn't fat and I didn't have a gut. I do weigh about 5 lbs more than when I started, but that's really by choice right now, I could pretty easily go down to 185lb and probably below that if I were so inclined. But I've also been incorporating weight training and calisthenics off and on along with the aerobics, which I didn't employ prior to treatment. So it's a sort of apples to oranges comparison between pre tx and now. I'm definitely stronger now than I was pre tx because of the weight lifting, and my aerobic fitness is basically where it was pre tx. Bottomline is that the abdominal fat is pretty well under control, and it seems my body at least responds to exercise and diet whereas several months ago it did not seem to - which was scary. Another thing I have to keep in mind is that I am middle aged now, so it's probably not reasonable for me to think I'm going to have the body of a teenager all the time with little or no effort. I've always been kinda spoiled that way because I'm just a naturally thin person. In the past I could always drink beer, eat pizza and then lay around watching tv with relative "fat immunity." But now with the metabolic tweakage that's occurred as a result of the interferon combined with the onset of middle age, I guess I'm just going to have to put some effort into keeping trim like everyone else now. But it does seem like my old metabolism is coming back as time goes by, lately my weight seems pretty solidly within the 185-190lb zone even with excursions into carbs and occasional beers. But if you're still struggling with intra-abdominal fat, try the low carb thing combined with cardio and maybe some resistance training. It really seemed to reset my clock quickly, results came very fast.
And sure I can send some extra energy your way, although lately I've been down with a cold so I don't have any reserves. That's another thing I forgot to mention is that it seems I now get colds and flu bugs. Before I almost NEVER got sick from colds/flu, I can't even remember the last time I was sick like that. It's been years and years ago. People even know me for never getting sick like that, I even used to joke about my "superior" immune system. Not sure why that was, but I'm assuming by having a chronic HCV infection it somehow protected me from getting "lesser" bugs. My immune system always being ramped up fighting the HCV probably made it easier for it to quickly identify invaders and to eliminate them before they actually had a chance to settle in and make me sick. But now that I no longer have the ramped up immune system, I was expecting to become vulnerable to flus and colds...and low and behold I got a doozy flu that lasted almost two weeks here recently. Oh well, I'll take the trade off.
Andiamo hey I was thinking about you! Great to hear you finally wrapped up that hellish ordeal and you're on your way to SVRsville. GOTTA feel good, especially for you after all you've been through, both with the trial and all your previous attempts. You really deserve the gold ring and I'm real confident you're gonna get it. Congrats man, get better in the meantime. And look out for the intra-abdominal snowman. ;-)
DD - Hey dude, wassup? I'm not gonna rag on you about the casual contact stuff, at least not on this thread. ;-) But that's really interesting to hear of your chronic congestion and stuffiness resolution after SVR-ing too. Maybe this is something that happens more often than we all realize? And you ask if I have noticed that people I have casual contact with have a propensity for chronic allergy-like symptoms. Not that I noticed, although I do know some people with chronic allergies. But I'm not really in constant contact with them and I'm almost certain they just have chronic allergies like some people do. I do not believe it is in any way associated with my previous HCV+ status imparting/provoking secondary immune responses in them as a way of defending themselves from contracting HCV via casual contact, as you obviously suspect is occurring.
And new york girl great to hear you're doing good too! Try to control those post-interferon MUNCHIES! It ain't easy, but if you fight it, it does get easier to "move away from the cookies." Just keep them out of sight is the best bet. ;-)
What an amazing testimony. You articulate well -- and present good encouraging information to treatment naive and treating forum members.
Every time I mention re treating , my husband grumbles and reminds me how hard it was on me (and it wasn't nearly as hard on me as many many on the forum). In a way , I still haven't recovered from treatment even though I finished August 06. I have recently changed my excercise routine and gone back to weight watchers (who has a livable plan if I will keep to it). I am 28# higher than when I finished treatment, 18# higher than when I started. I threw away all the "fat" closthes during treatment and now have to go rebuy. I have had the similar problem of metabolism changes and even the gut fat that I never had before. I was never slim, mind you, but am becoming more of a apple than a pear. There were just too many months of being a couch potatoe to undo it. Even during the writers strike I didn't want do do anything else in the evening except stare into the TV void.
Your post is very encouraging. I believe I will be the first one at the door as soon as Telaprevir hits the market.
Hey there....I wondered what happend to you. You gave me great advise when I first started treating. I am finished tomorrow after 6 months (g2).
Thank you for the input. What an enjoyable read! I am wondering how I will feel post tx and you helped shed some light on it. I did not have sypmtoms though of the hepC previous to treating, but am anxious to see if the meds did permanent damage.
First i thought what along post but when I started to read i just wanted it to be longer.
And you came back with another and another just as long post. and I just wanted them to be longer, thank you so much!
Your long posts give me so much encouragement and also confirmation of my own thoughs and experience. I´m on my sec tx right now.
Got alot of benefits from my first tx although I relapsed, had a paus from tx for 10mos and never felt better and stronger in 25 years.
didn`t felt better immediately but after three months post tx, a lot of problems that I`ve had for 25years or more (have had the virus 33years) started to go away and some getting much lesser.
I didn´t now by then that this problems was HCV related.
But when I´v read on this forum, that many people have had and still have the same problems, such as them you mentioned and some others, like lowerback promblems, muscle pain general stiffnes in most bodypart,kneepain and burning sensations in feets etc. Then i started to put 2 and 2 gother and it became 4.
The main if not the only thing that motivates me to do tx ones again is the benefits I recived from the first time.
You my man, love you.
You also made me read all the others post on this thread wanna thank you all for encouragement
Great to see you on the forum again mre! Thanks for posting all this good solid info.
I am 8 months post tx and not SVR. I have the not-white eye thing and some of the fatigue but I mainly have the out-of-whack metabolism. I can see that I had it some before treatment but I have it worse now. As I still have the virus, I wonder if there's anything can really be done to remedy this. I suppose I could in desperation try your low-carb diet & exercise solution. I'm seeing my doc tomorrow and may ask to get referred to an endo. I have been slim all my life too and I just can't stand being overweight 20 lbs as I am now. Like you I have tried all my usual remedies for dropping weight but this time nothing has worked. As you say, it's scary.
Oh yes and another thing you didn't mention. I'm sweating and freezing a lot. It's very uncomfortable.
Thank you so much for sharing your troubles and your journey to SVR -- my sincerest congratulations, too! I have read and re-read your post -- it's inspiring, uplifting, and so very ...readable. :)
So often I'm dealing with data, and percentages, and statistics, and research, and medical literature and 'medical cases', so I really appreciate the personal story, personal testimony -- that's what initially led me to this forum. Far from long-windedness -- it was a delightfully refreshing warm breeze. Hats off to ya.
Good to hear from you! Congrats on getting your life back on track.
I too am SVR from VX950 triple tx. Not much time right now to give details but the one thing I have noticed about my post-tx body is the lack of fat and muscle. I'm eating well and exercising but it just won't stay on.
Enjoyed your posts and it's nice to see your name in the list again .. I read through ALL of that. Good to know there is life after SOC .. and that it doesn't just magically get better, there's a bit of transitional time and some after-effects. Nobody needs pie-in-the-sky expectations and the letdown that comes with them. And good to know that after that transitional time .. .life begins again. Congratulations on your whole journey .. that's quite an adventure you've gone through. Wonder if SVR feels like climbing Mount Everest.
Didn't know you were in San Diego! That's where my son has been for the last four months and he comes home this Saturday for his next university semester then back in four months for another internship in San Diego again, same place. I saw the articles about the shark attack .. sent him an MSN message telling him not to swim near seals.
But back to you ... thanks for the encouragement for all of us.. and it's just simply nice to see you posting again.
Best wishes for continued improvement and good health and a wonderful post-tx life to you. :)
It was so great to read your post...thanks as always for sharing such valuable information on your experiences. I'll be referring back to this as I go through my own post-tx saga (9 weeks from now). I'm so glad you're doing well. Keep up the good work!
I enjoyed reading your post. I am now post 11 months and have gained weight i.e. belly fat that I never had before! I have noticed alot of changes with my metabolism and have tried to cut out the fats and exercise more but to no avail. I will try the no carb or low carb thing. The things you posted are indeed alot of things I am struggling with too. I am hoping after I reach the 1 year in june that things might start to straighten out. Best wishes :) shelly
Hey man. Good to hear that you are doing well. It's about time we gathered up the our fellow Prove1 labrats and get a picture of how everyone is doing. After your epistle, all I can say is that I'm in disgustingly good health what is now around 70 weeks after completing 24 weeks of Prove 1 treatment.
My situation going in was Geno 1b, VL 26,400,000 with Stage 3 histology. I started Prove 1 in the first week that the drugs were available, and drew to golden group for 12 weeks of telapravir + SOC followed by 12 further weeks of SOC. VL went to UND by around day 15 of treatment, and has been UND since that day.
No complications or weight issues to report, and like you I'm operating at higher energy levels than pre-tx. I'm still going very genrly on the alcohol, so can't really report on tolerance. We all went through our own little hell during Prove 1, but looking at it from this side it was a life-changing opportunity. The alternative of facing a gradually deteriorating liver and all that entails was not very attractive.
I haven't been following Vertex lately, so I wonder if there is any news from teh phase 3 trials. I guess they are in the very early stages at this point.
The allergy/sinus/stuffy nose thing describes me, too. For the past 20 years allergies and nasal congestion have been so bad I've been on steroids, nasal sprays, allergy injections, antihistamines, decongestant, antibiotics . . . . .
Weird, but allergy sx were better on TX and now that i'm just 10 days post #72, I've already noticed a big difference in my nozz. I was thinking about it today, before I read this thread, that my itching, allergies. headaches don't seem as bad.
JEEEEZ! If TX cured my allergies AND the hep-C i will be one happy camper! ::)
Well, I just got my 48 week post treatment PCR - it's UND (<2 IU/ml), so my SVR is confirmed to still be intact. I treated for a total of 41 weeks, receiving about 7 weeks of SOC+telaprevir and another 34 weeks of SOC alone (had to stop telaprevir early due to rash). I experienced ribavirin dose reductions thoughout most of my treatment and took large amounts of immunosuppressive drugs to control the rash (immunosuppressants reduce the effectiveness of interferon and ribavirin). So my treatment was very haphazard and very much less than optimal - and yet I still nailed my SVR. I only add this update because a few people have asked about it because I was in the Vertex trial early on and some were curious if someone who took Telaprevir would have an SVR as durable as a "normal" SVR (i.e. from SOC alone) 1 year after treatment ends. As you can see, it can be just as durable - maybe even moreso considering all the BS I went through. Also don't forget about PLN (pam) and APK. They both underwent 12 weeks of SOC+telaprevir + 12 weeks of SOC alone and both SVR'ed and both maintained SVR 1 year post tx. And PLN had her ribavirin dose cut in half early on in treatment too, again demonstrating how durable an SVR can be even with halfed normal tx times and dramatic riba dose reductions.
I decided to append this "SVR update" onto this post instead of opening another post just for this news. It's been a long arduous journey from initial screening enrollment into the trial, from the beginning of treatment, to all the challenges posed by the rash and so on...to now a whole year after treatment ended, an end of sorts. As discussed earlier in this thread, I just hope everyone remembers and knows that you can be cured. You really, really can put this thing behind you. It ain't always easy, but the results are worth it. Please keep the faith and keep your eye on the ball. Best to everyone...
You are my Hero...this post answered an important queston...I was told that I may have to reduce riba...I was worried...I thought it was a bad thing...but you did it and reached SVR...tks for the info.
You're going to have to write your stories in volumes and get a larger book cabinet to put them in. Seems that you did a lot of wrong things. Is this a partial redemption? As for exercising, I was told by my doctor to keep doing as much as possible through treatment. Could that have helped you more? I know I struggled greatly doing weight lifting, groaning and grunting my way through all of it.
I never developed Thyroid or other anemic problems, although my platelet count dropped but not to a dangerous point. There was a horrific episode with Infergen, but that was due to double-dosing and would have killed most people anyway of they kept it up.
I don’t know if there was a correlation between not developing more serious side effects and my determination to lift weights and stay in shape. The doctor felt I kept my immune system in shape by exercising. I now have a poster of Lance Armstrong in my home gym wall to inspire me through my next (5th) attempt. Do you feel you have been rehabilitated of your bad habits? Do you feel normal at this point? Congratulations on your SVR and hope you stay that way...
"Seems that you did a lot of wrong things. Is this a partial redemption?"
Not sure I follow. You mean by not exercising during treatment (and presumably "sinning") I'm now partially redeeming myself by writing long posts? Sounds like odd logic to me magnum, maybe you'd like to rethink that statement. Although on the other hand, you're entitled to your own thoughts I suppose - no matter how disjointed or dumb they may be.
As to the idea of exercising and eating right during treatment. YES, of course you should eat right and exercise if you can, normally that's how I live my life all the time (as I am right now). But for me and many others (if not most) it's simply not possible to do that during treatment. The drugs have such profoundly negative effects in terms of appetite, taste and energy levels it brings us to our knees due to its powerfully degrading side effects, especially if telaprevir is put into the mix. From what I recall of your recent posts, it sounds like you may be entering a telaprevir trial, so you may experience some of this "3'rd dimension" in treatment for yourself. And if you are unfortunate enough to get a super rash (caused by telaprevir) like myself and a few others did (or the "turbo-sh!ts" like others did), hang on to your hat because you wont be going to the gym anymore (to put it mildly). Lifting weights and engaging in aerobic activities where folds of skin rub together is a bit difficult when you've got drug induced leprosy.
Also, you may be surprised to hear this, but just before and during much of my treatment I was actually deliberately eating unhealthy foods high in saturated fat. The reason I was doing this is because there's a pretty convincing study that demonstrated a strong correlation between RVR, EVR and SVR rates and those with high LDL cholesterol levels (LDL being the "bad" cholesterol). You can view that study at the link below:
I can't know at this point if eating cheeseburgers, pizza and ice cream before and during tx might have helped me get my SVR, but I certainly achieved my goal of increasing my cholesterol during treatment. So there is a possibility that eating bad foods during treatment may have helped bring me to the SVR promised land.
Lastly, you mention that this will be your 5th attempt at treatment. Do you have any thoughts as to why your previous attempts at treatment failed? Are you aware that ribavirin should be dosed according to weight for optimal efficacy? What was/is your weight and how much ribavirin were you prescribed each day? How did your HGB hold up during your treatments? With a name like "Magnum" along with you apparently keeping your physical activity constrained to weight lifting (leaving out aerobics) implies you may be a big burly guy with a high or relatively high BMI. Those with high BMI's tend to have a lower rate of tx success and are probably less likely to experience the stronger side effects due to the dilutive effects of fixed dose drugs within their large bodies.
"Do you feel you have been rehabilitated of your bad habits? Do you feel normal at this point?"
Yes, I feel mostly rehabilitated from my bad habits. But I've taken up beer drinking again since stopping treatment. But then, I don't consider that a bad habit. And no, I dont feel "normal" at this point. Normal for me is/was defined by a cloud of chronic fatigue following me everywhere for the past 25 years. But now it's gone and I feel fantastic almost all the time. So thankfully I've been feeling abnormally well lately!
Congratulations on your 48th birthday :) BTW how is your gut profile doing now that you're back on the carbs? I've been on a low carb diet and stepped up exercise program for close to a month now and have lost around seven pounds. Probably more important, its enabled me to be off bp meds and statins. I do miss beer but my current diet suggests only red wine due to the carb content in the hops, i.e. the nomber "beer belly".
I forgot your stats and situation, so this is just a general comment. "Mre" was treating with Telaprevir plus riba plus interferon. If you're just on riba and interferon, you cannot compare your riba reduction to his. Apples and oranges. In general, keeping your riba dose is very important in terms of SVR. Of course, every situation is different in terms of what the reasonable/optimum dose should be. Rather than reduce dose, many here use Procrit (epo) which will help raise hemoglobin, but it takes a few weeks to kick in, so getting on the epo wago earlier is often better than later.
"Normal for me is/was defined by a cloud of chronic fatigue following me everywhere for the past 25 years. But now it's gone and I feel fantastic almost all the time. So thankfully I've been feeling abnormally well lately!"
You brought tears to my eyes....I have felt the cloud of fatigue, seemingly all my life. I can't wait to get rid of it. The "cloud" has inhibited my professional success and made my quality of life a challenge to maintain. How long did it take for the cloud to go away...I know everyone is different but what was your experience?
My weight ran amuk after 35 and I atribute that to the chronic fatigue and subsequent depression / giving up activity ...wonder why most loose weight with HCV and I gained.
Beer...I love beer with my tacos and pizza. I gave it up when I learned of my HCV status.
(no...beer, tacos and pizza were never a staple of my diet...just a nice treat)
Tks...I am currently enrolled in Vertex trial and remain optimistic that I am not receiving the placebo. GT 1b, VL 14ml, Stage 1, Grade 3. Study Nurse told me that my HGB has dropped one number each week and Protocol requires riba reduction if it drops below 10...
Certainly don't want to rain on anyone's parade -- and all my best to Mre and Andiamo for their new energy levels -- but I feel it would be remiss, especially for those new here, to point out that a reduction in fatigue is not a forgone conclusion of SVR (being cured).
From a more scientific point of view, this study shows that only 35% of those that SVR have a reduction in fatigue. Another study which I cannot find at the moment, showed 20%. It is also unclear at least from the abstract, how many of the 65% who did not show a reduction in fatigue actually had more fatigue after SVR. Anecdotally, non-scientific counts here as I've read them, show the majority of people here either feel about the same -- fatigue wise -- post treatment or more fatigued.
My point here is not whether one should treat or not -- there are many excellent reasons to treat -- but simply that if the prime reason you're treating is to reduce fatigue -- a very common sympton for those with HCV -- than you should understand that not only are the odds are against you, but that there is the possiblity that you may end up with more fatigue post treatment.
Personally, I had bouts of fatigue prior to treatment and similar post treatment, even two years post SVR. What I've found works best for me in terms of fatigue is diet and aerobic exercise. Ironically, the two diets that have worked the best in terms of fatigue are a low fat, high carb diet (similar to Pritikin or Ornish) or a low carb, higher fat type of diet (similar to the Zone or South Beach). Apparently, at least in my case, if you add fats you have to subtract carbs or the fatigue would set in.
So.....for anyone who otherwise might not want to treat right now -- but is thinking about it because of fatigue --- I'd highly recommend they consider a vigorous diet and exercise program first. Perhaps one of the diets listed above combined with 40-90 minutes of aerobic exercise a day. Trust me, as hard as it may sound to some, a lot easier than treatment :)
Good luck with your trial and if may turn out (maybe the data is already there, Im not current) that full riba dose is less important on triple/Telaprevir treatment. Also, both Mre and Andiamo lost their fatigue after tx with Telaprevir. While its probably too early, it would be interesting to see some studies on fatigue level reduction of those SVRs with triple therapy versus SOC. However, for any number of reasons, the studies aren't nearly as abundant in terms of studying what happens to us SVRS.
I will remain positive that this "cloud" will go away. I do believe that I may have overlapping symptoms...especially in regards to the weight gain.
I wonder how many SVR's have researched rebuilding their bodies with suppliments and good nutrition...and those who have and still experience fatigue have they looked for other health problems...ie., Epstein Barr...
I admire your dedication to yourself...If my cloud goes away I may be able to follow in your footsteps...but right now, I'm can't muster the discipline.
mremeet - you said you have gone back to drinking beer...what is the state of your liver? you obviously have minimal damage and I'm sure that you aren't living on beer but I can't help but wonder how long it takes for the liver to heal after SVR...Have you had this discussion with your Dr?
To be clear, the diet and exercise program is a suggestion for those who are NOT on treatment. Either before or after treatment. During treatment, I exercised to tolerance which was minimal in my case and limited to walking and very light gym workouts when able. Also, I don't advise anyone to try any of these diets while on treatment. Tx is a whole different ball of wax, or is it Peg.
andiamo - Thanks for the kind words, glad to hear you've been feeling well too! I'm confident you'll get your official-smichial USDA seal of SVR approval soon enough. I really hope the good vibes continue for you ad infinitum - you deserve it man.
Gator - Yep I feel great after completing tx. Getting rid of HCV meant getting rid of chronic fatigue for me. I was desperately hoping that would be a benefit of being cured, although before treating I was doubtful I would be so lucky. But it's all turned out roses, and now looking back and learning what I have during this long strange trip, I think that quite a few people who treat and get their SVR are better off in terms of fatigue post tx - much moreso than you might imagine just judging by what's said on internet forums (where negative experiences are much more likely to be heard/voiced). But like jim said, exercise and good health habits play a very big role too. So take care of yourself after completing your treatment and with any luck you'll offload that awful CFS monkey too. Best of luck in the meantime, and stay away from the rash! ;-)
jim - Great to hear you've unloaded 7 lbs, that's awesome. I'm pretty sure you're a pretty thin guy who already runs a pretty tight ship, so 7 lbs is a significant amount of ballast to jettison. A brick weighs about 5 lbs, so if you pick up a brick and half and feel the heft of it in your hands and then throw it away from you, it sort of metaphorically manifests just what an accomplishment it is. I unloaded 4 bricks, and good riddens to the stuff.
And you ask how the gut's holding up - it's holding up fine. I'm back on my old full carb diet, including lots of rice (while in Japan), multiple bowls of cereal in the morning, significant amounts of beer drinking; and yet my weight has been anchored right around 190lbs. Sometimes dipping as low as 187lbs or so, but 190 is definitely where my body likes to be right now. Also my waist size is one inch smaller than it was prior to treatment, and in general I'm stronger and more muscular than I was prior to tx. I've definitely shed fat and replaced it with muscle and then some. As far as body composition, I'm better off now than I was pre-tx (even being 2 years older). So it's definitely looking like the interferon temporarily tweaked my thyroid functions, or whatever the full mechanism is that controls metabolism and appetite. And going on the aforementioned low carb boot camp seems to have been a sort of catalyst in getting me back to ground zero. Happily it seems to be a permanent state of affairs, but I guess only time will tell if that's truly the case. Keep us updated on how your program works out, it'll be interesting to see if you can "reset your clock" too.
I was already battling the "bulge" when you last posted, but your success was certainly a motivation. In actuality, the weight loss may be closer to 11 pounds, depending on which scale I use. But more important, my total cholesterol has dropped from a non-statin baseline of around 200 to 150, with an increased HDL. LDL now below 100. If I can maintain this, I'll probably stay off statins for good, or perhaps add a baby dose with or without Niacin. BP has also dropped from 160/90 to 130/80 because of diet, weight loss and exercise. Current diet has very little salt in it. So, because of my health priorities with diet -- cholesterol and bp -- I will not have the luxury of reverting back to my old diet when my weight/clock stabalizes. Hopefully, the current diet is one I will be able to maintain. If not, modifications will come with a price which will be statins, in as low a dose as possible. I'll keep you posted on the weight/health issues. You do the same.
Oh and another thing jim, you mention above about the "scientific" proof that achieving SVR is poorly correlated along with a resolution of CFS. I haven't read the studies you mention, but when you say "this study shows that only 35% of those that SVR have a reduction in fatigue" I have to take issue with that on its face for the following reasons:
Many if not most who have HCV report no real problems with chronic fatigue. They report feeling normal and never having any idea they had it etc. So from the get go, this very sizeable cohort go into treatment without any fatigue problem to resolve. So assuming a person who did not experience fatigue in the first place comes out of treatment and is asked how they feel, it's quite likely they'll say either (1) "I feel the same", or probably more likely within the first two years or so after treatment, (2) "I feel worse. I feel more tired or run down than I did previously." And the reason they feel that way is because of the drug hangover (as you are indicating). But the drug hangover is likely temporary in most patients, within 2 years I think most who did not have fatigue prior to treatment eventually return to however they felt prior to treatment (accounting for their age and pre & post tx health habits, of course). And of course there are exceptions, I certainly don't wish to diminish their experiences or suffering - but we are talking percentages and the collective experience, not just the worst case scenarios.
Getting back to the cited percentage of only 35% reporting a reduction of fatigue. Considering how many people don't experience significant fatigue while chronically infected with HCV, that leaves maybe half (or thereabouts) that do experience chronic fatigue. And I'm just guessing on how many really experience true chronic fatigue, but it's probably around 40% or so for the more serious cases. But if you did use 40% of the total population with chronic HCV, then the 35% who reported a resolution of fatigue is very significant. Remember those who didn't have fatigue aren't going to report an improvement post tx simply because they had no problem to begin with. That leaves about half of the population without fatigue out of the statistical segment that are even eligible to report an improvement in fatigue. So assuming that about 50% of the total population are fatigued and 35% of that same total poulation report an improvement/resolution in fatigue after SVR-ing - then you have about 70% of those who did have fatigue successfully rid themselves of it (and that ain't small potatoes!). And if you use 40% of those with serious fatigue in the total population, again with 35% reporting an improvement post tx, then you have a staggering 88% improvemment rate amongst those with pre-tx CFS! I'd certaintly say that's something to take notice of. I think a much more meaningful fatigue survey would be to isolate those who really have clear cut cases of ongoing fatigue that is clearly associated with HCV (and not smoking, obesity, cigarettes, old age etc). Exclude those who do not have fatigue (which anecdotally to me seems to be about half, maybe a little more), and then wait a reasonable period of time after treatment (like 2 years) instead of simply querying people shortly after the harrowing and debilitating experience of nearly a year of SOC tx. Also, factor in whether the patients were geno 1 or non-geno 1 and their corresponding durations of tx, because obviously those who've treated for 24 vs 48 weeks are more likely to recover more quickly and in general experience less long term post tx side effects.
Also, again, I don't think it's easy to truly scientifically statistically quantify fatigue levels both pre and post tx. And I know we've debated this topic many times here before, but I must reiterate that using internet forums as an anecdotal yardstick for judging post tx fatigue levels (or lack thereof) is largely off the mark. The vast majority of people who successfully treat and feel much better leave these forums. They don't hang around, they get on with their lives simply because they feel much better and no longer have gripes and complaints to air or resolve. That's human nature. And since those people aren't here to tell their stories, their experiences and outcomes are grossly underrepresented. It overly weights the experiences of those who do experience problems post tx (with fatigue) and gives a false impression that things are worse off than they are *collectively* for all SVR's. I suspect that I'll be fading away on this forum in the months to come too, eventually disappearing altogether. I'll no longer be here to continually tell everyone how great I feel...but you can rest assured there will be many more new people arriving who do have problems. Coming here to voice their problems because they're seeking help in hopes of resolving their problems. Meanwhile, myself and others like me won't be here because we don't have any problems to resolve, so we don't need any help so we won't be showing up here. I'm sorry but that's how it works, again, that's human nature and it MUST be accounted for when using these forums as a post tx fatigue litmus test.
I'll respond briefly as currently holding ice on face from dental surgery this morning
You say: "...Many if not most who have HCV report no real problems with chronic fatigue"
This study suggests that the majority of those with HCV have fatigue -- 53% to be exact. http://tinyurl.com/565kdh
So, in that light, I think the other study posted previously does have relevance.
As to anecdotal reports here, yes, the validity has been debated, and I could argue the other side -- i.e. many don't want to post negative stuff on a board where people are treating, etc, etc. -- but I'll leave it to the study data for now.
My two points are that a lot of people -- a majority -- do have fatigue prior to HCV, whether it's caused by HCV or not. And the second is that a majority apparently do not feel any better in regard to fatigue once treatment is over. Back to the ice.
On re-reading your post, I see you did account for a simlar per cent of the population that is fatigued. As to your logic of how that relates to the study, I'll leave that to others to dissect, but the way I read the study was that only 35% had an improvement in fatigue and I'm assuming the study takes into account those who are not fatigued when they make that statement, but it's unclear from the abstract as things often are from abstracts.
OK. I just re-read the abstract of the study that I said I posted, but forgot to post :)
Unless I'm reading it incorrectly, as I surmised, the 35% figure cited only takes into account those who had baseline fatigue prior to treating and not the entire cohort of those with HCV per your hypothesis.
Here's the study: http://tinyurl.com/6z8v8r
Here's the fatigue prevelance study I also forgot to post: http://tinyurl.com/565kdh
I agree they say some confusing things. Definitely sounds like a flawed study that needs to be repeated with proper design. Hopefully with some input from someone who actually knows something about this phenom, because these guys obviously don't.
Here's what they said: "of the treated patients, 83 were sustained responders...Fatigue was improved in 29 of 83 (35%) responders..." So all they're saying is that out of the total number of 83 SVR's, 29 of them (i.e. 35%) experienced an improvement in fatigue. But quite clearly, and what they fail to mention, is that only a limited percentage of the SVR patients had pre-existing HCV related fatigue beforehand anyway. There is no evidence whatsoever (certainly that I'm aware of) that those who have pre-tx fatigue are more likely to SVR. So again, assuming there's a roughly even distribution of fatigued vs non-fatigued pre-tx persons within the SVR subgroup (not an unreasonable assumption at all), then it's quite promising that 35% of them would experience an improvement in fatigue post tx. In other words, if roughly 50% amongst the SVR group were fatigued prior to tx, that would mean about 70% of them experienced an improvement after tx ended. That ROCKS, no??? And also, it looks like they started surveying right after treatment ended and then concluded their surveys a mere 18 months after tx ended. Yet another flaw in their study. And how were these "final results" tabulated anyway? Are they the running combined average of how people felt (right after tx ended + 6 months post tx + 12 months post tx + 18 months post tx)/4 = their results?? If so that's just plain dumb, and unscientific too.
But in their conclusion they do say "In hepatitis C, a sustained virologic response is associated with a reduction in fatigue and cryoglobulin..." thereby acknowledging that SVR does impart improvement in some. But then go on with what's essentially a non-sequitor "...but fatigue frequently persists despite a virologic response." Well yeah in some, but considering the details described above, it's definitely in the minority.
Yes, it is a bit confusing and perhaps the words "it was improved" is clarified in the full-text which we don't have. And yes, it would be nice to take a look 2-3 years post tx, as opposed to 18 months post. Certainly not enough studies done on us SVRs. I'm sure we're in agreement here.
I do believe that you are making quite a few 'assumptions' yourself in your post regarding fatigue after SVR. I believe that most major studies on HCV demonstrate that somewhere in the neighborhood of 50% to 60% suffer fatigue from their infection, on a chronic basis.
Most of the surveys regarding 'resolution of fatigue' after SVR are limited to those who 'had fatigue to begin with', as a symptom. To ask someone who never had fatigue if their fatigue improved after SVR is a meaningless piece of data! Usually the percentage of that group who see a resolution or see a great improvement in their fatigue symptoms seems to vary from the low 30's% to about 50%.
My doctor, who has treated thousands with HCV (and who is frequently cited in HCV literature and at HCV conventions), many in large clinical trials, as well as having a large private practice, has stated several times to me over the years that from his statistical observations, the number of people who see their fatigue problems resolve in any significant manner is about half, or 50%. He said that seven years ago, and says the same thing today.
A large study of SVR's, originated in the UK, and disseminated worldwide, (which many of us participated in on this forum) captured data from many hundreds of post-tx SVR's. About one-third seemed to feel better after SVR, including fatigue (which was the most frequent symptom reported), about one-third felt the same as before, after gaining SVR, and the remaining third stated that they actually felt worse after SVR, often complaining of deep fatigue, inertia, depression, brain fog, and increasing arthritic and CNS problems. I do not think that there is a clear 'expectation of outcome' for anyone who treats and becomes SVR, other than a decrease in liver damage, or sometimes even a reversal in liver health and architecture. The cold statistics indicate, study after study, survey after survey, that the extra-hepatic HCV symptoms are about as likely to remain as they are to go away.
We all go into tx hoping for a great outcome, as far as sx, but the main goal medically is to prevent liver failure, and HCC. Any resolution of old, longstanding HCV sx is just a nice bonus to treatment. I would NEVER tell anyone to expect resolution after getting the SVR...since its really a coin flip. Thats how I see it, anyway. Although I am also going on recollection of studies and surveys, as well as what my doctors have stated, I do believe that the bigger picture is pretty much as I stated above, give or take a few percentage points.
DD: "....I do not think that there is a clear 'expectation of outcome' for anyone who treats and becomes SVR, other than a decrease in liver damage, or sometimes even a reversal in liver health and architecture. The cold statistics indicate, study after study, survey after survey, that the extra-hepatic HCV symptoms are about as likely to remain as they are to go away.
We all go into tx hoping for a great outcome, as far as sx, but the main goal medically is to prevent liver failure, and HCC. Any resolution of old, longstanding HCV sx is just a nice bonus to treatment. I would NEVER tell anyone to expect resolution after getting the SVR...since its really a coin flip. Thats how I see it, anyway..."
Well, I knew there would come a time -- and a post -- where we would be in complete agreement :)
I too was brought to tears that you felt I was bombarding you with dumb questions supposed to trigger your ire. No, I was just taken aback by your beer drinking and that you felt that it was normal even after SVR. I understood it was to a lifelong abstinence to alcohol or at the very least, a substantial reduction.
Notwithstanding the traditional trend of beliefs on that subject, I will drop it and leave it to the individual's choice. IF the doctor said I could have a daily glass of wine for example, I would, but I feel that if I finally achieve SVR, I would never bring myself to gulp down double margaritas one after another as in the past. That should be logically understood.
I’m not a bulky looking weight lifter, I left weights three times a week and have a 40 year old looking body at age 61, even though I underwent 13 surgeries. A a logical approach to keeping the body in shape to keep the immune system healthy. I swim for cardio exercise since I can't run.
At any rate, I still salute you on your SVR. As for your question on dosage. I was always at 1200mg Riba daily and the typical torture of Interferon, Pegasys and Infergen, with some Amantadine thrown in (which didn't help). I look forward to your next volume...
I agree with DD and Jim on this issue. I think the only realistic goal one should have upon embarking on treatment is SVR. If other associated issues resolve and if new ones don't arise as a result of treatment then that's an added bonus. Mike
I'm happy for you that you're doing so well. I can't really relate to it as I've never had SVR despite being on and off treatments for 10 years. The Telaprevir thing is out for me so, to be quite honest, I can't get on the Yea ! "TELAPREVIR" bandwagon. I drew the group C no Riba group and did not clear on the Telaprevir and I'm told that I will not be able to retreat with it when it's available to the general public. So, I will have to keep trying to find my miracle from God's touch and he may do it outright or with me on a different treatment. Right now, I'm in the Debio-025 trial. The Debio portion of 29 days is over and I'm awaiting those results and I'm currently on SOC for the Part 2. So, I hope everybody excuses me from staying out of the excited party atmosphere over Telaprevir because I just don't have the ability to feel all excited about it. I will continue to be happy for those who get SVR, no matter how they get there.
DD: I'm not making any more "assumptions" than you are, and I also specifically addressed what the referenced study indicated above (unlike yourself). Both you and jim have failed to elucidate further on that, instead falling back on the familiar "comfort food" of reiterating/bolstering dubious "evidence" and personal anecdotes (many internet borne) that just happen to concur with your own personal experiences, fears and phobias (of which you constantly seek to bolster and validate).
But even the evidence cited (by jim) doesn't appear to concur with what he or you are asserting. And besides that, what are all these studies you are referring to without *referring* to them? Lets have some references we can look at and examine. You've made all kinds of wild claims above and yet provide zero references. I mean what's that all about? And when you say "To ask someone who never had fatigue if their fatigue improved after SVR is a meaningless piece of data!" Well no sh*t sherlock, that's exactly what I'm saying above. Take a look again at how the study abstract is worded, they simply say there were 83 SVR's out of a much larger total cohort, and 35% of those SVR's had improvement in fatigue post tx. Even if every single one of those SVR's had pre-tx fatigue, this clearly demonstrates that achieving SVR DOES impart an improvement to a significant number of SVR patients (i.e. more than a third!). But wait...the abstract does not indicate that every single one of those within the total SVR cohort (of 83) experienced significant fatigue prior to tx, it doesn't say that at all. It directly implies that they're a mixed group, some of which experienced pre-tx fatigue and some who did not experience pre-tx fatigue. Unless you're suggesting that every single person in the study had problems with pre-tx fatigue?? It doesn't say that in the abstract, all it does is refer to "inclusion criteria" which conspicuously leaves out pre-tx fatigue. They also say "At baseline, fatigue and other extrahepatic manifestations were present in 254 (59%) and 225 (52%) patients." Apparently your read on this is that this means ALL PARTICIPANTS have pre-tx fatigue - why do you think that DD?? Because that doesn't make any sense. Also, based on what they say above that 59% and 52% includes those with fatigue AND (repeat *AND*) "other extrahepatic manifestations". Now, what does "other extrahepatic manifestations" mean DD? Do they mean fatigue again in a redundant sorta way? No, obviously what they mean are factors OTHER than fatigue (that's why they said "other"). So what this clearly means is that the reported percentages of 52% and 59% are NOT just values associated with fatigue alone. In other words, the people within that 52/59% are not necessarily fatigued, but instead experience other symptoms like cryo or arthritis or purpura or whatever, and are included amongst the fatigued in that factoring. Or in other words, there are people who are not fatigued that are included in that assessment which directly means that the total percentage of exclusively pre-tx fatigued people within the TOTAL cohort are less than the specified 52/59%, which of course means that the reported 35% improvement in fatigue is even more remarkable. And if you don't mathematically understand why that is, then I'm not spelling it out for you...unless you ask nicely. ;-) Oh, and again none of this even touches on the VERY pertinent issue of when they've chosen to query these patients. I don't think anyone really cares very much if they have fatigue shortly after treatment (and like it's not surprising they do?), that's almost a given. What we want to know is that well after recovery, well after the drugs wear off (like 2+ years post tx), how many SVR's who previously experienced fatigue, experience relief from it?? That's what needs to be asked, and that's when it needs to be asked - not starting at the end of tx and every six months thereafter for a mere year and half afterwards! That's ridiculous, and again exemplifies why this study has been put together by ill informed amateurs.
Magnum - No problems. But if you have a problem with my beer drinking, next time just say so. (i.e. I didn't know what you were driving at in your previous statement). And yes I know beer drinking is bad, or more precisely, it *can* be bad. Although you seem to be comparing yourself to me, and we're apples and oranges dude. You're close to 20 years older than me and have borderline cirrhosis. If I were in your shoes I wouldn't drink a drop either. But I only have F1-ish damage, and although I do drink a bit more than I should here and there, overall I'm pretty well behaved. That's why I have an F1-ish liver after having HCV for 24 years and not exactly being allergic to beer all throughout my 20's and 30's. Plus now that I'm SVR, I'm pretty sure the 'ole liver can handle a few suds here and there. Lastly, I LIKE beer - it's tasty! ;-) In the meantime good luck with your treatment and no hard feelings.
In the so-called surveys, what are the circumstances of the participants? Does it matter that everyone responds to tx with different sx? Of course some people are going to have fatigue for life after tx…if you have cirrhosis, you have fatigue right? Is anyone sorting the people into groups of who has what kind of damage…Is there a correlation between liver damage and fatigue? Are these participants taking supplements and developing good diets and living habits to rebuild healthy bodies?
I have felt this disease for decades…how could others not feel the fatigue? Is it because they weren’t very active to begin with? Maybe I was so active that it was more noticeable to me when I couldn’t get up to mow the lawn as apposed to someone who maybe didn’t have a lawn to mow.
I have minimal damage so far. If I achieve SVR and my liver returns to normal in (guessing) 6 months to a year, I’m sure I’ll feel fatigue (diminishing) till it has fully healed. If I turn into a couch potato after SVR and don’t do anything to regain a healthy activity level, I’m sure I will always feel fatigue….do they ask questions about activity in these surveys?
Age could even be a factor…I’m sure a person of 40 is more fatigued than a person of 20 and a person of 60 is more fatigued than a person of 40…with similar life syles
About drinking alcohol…once you achieve SVR, your liver repairs itself (if you let it and if no cirrhosis) once it’s repaired shouldn’t it remain that way under normal circumstances? Ie,..alcohol in moderation….anyone who drinks too much is in danger of ruining a perfectly good liver…HCV SVR or not. So why would you abstain from drinking forever if you have a healthy liver. The disease can’t come back once it’s gone unless risk factors return…or can it?
I’m with mremeet…I’m going to drink again (in moderation) after SVR…I will give my liver ample time to heal….mmm I can taste the Merlot now….or a nice cold one (or two) after a long hot day at work….I don't need to be plastered...
I went into tx with high hopes of gaining back my quality of life. I want to be active…and live life to it’s fullest potential again. I can’t imagine that I will feel this crappy forever on this earth.
I’m going to make my own poll questions and post it here….maybe…if I can muster a thought with this brain fog….grrrr
I have both questions that I was hoping someone might have info on and then some comments from everything I've read above.
1) is there any correlation between lack of symptomology and
disease that is more refractory to treatment?
2) is there any indication that working out can cause the body's immune system to stay "too strong" to allow the anti viral portion of the medication to work in order to eradicate the virus?
I think that treatment does tend to jack with metabolism (since I am no longer procrit dependent whereas I was prior to treatment) but I don't know have a complete theory on how this occurs other than that of course it affects the bone marrow and its my belief that this is what causes the myriad of infections in some folks like mremeet (and myself) after treatment. I've been hospitalized several times post treatment and infection was the number 1 reason, whereas during tx, it was always due to blood transfusion. My own pet theory on the more serious auto immune diseases that occur a year or more after tx are that they are diseases we are genetically predisposed to but that might never have been realized in our system had they not gained a foothold after treatment when our bone marrow is suppressed by the interferon. Because some of you may not notice or know that you have mild levels of bone marrow suppression. We are all so used to the ribavirin pulling our blood counts down that it takes something dramatic for them to find out your bone marrow is suppressed but I would think frequent infections might be a good indicator. (Of course let me throw a minor monkey wrench into my own pet theory by saying I had symptoms of RA from almost the first thought and surely your immune system isn't eradicated so fast. Although then again, it is beaten down substantially or the ribavirin couldn't work to take you to UND in two weeks... I don't know...)
Sometimes it seems to me like people get really confused about the etiology of their symptomology between things that are hep c related and things that are hep c TREATMENT related because both inteferon and hep c can cause the same issues. To me though, it seems like if prior to treatment you do not have symptoms of RA but you develop RA during or immediately following a successful treatment, then your RA is almost certainly caused by the inteferon. Same thing goes for fatigue or any other issue that can be caused by either hep c or interferon.
actually, i expected to get an ai disease going into treatment. what with my luck and the literature I'd read. I am happy that RA looks to be my only ai disease thus far though (and not lupus or m.s.) now that it looks like that one area on my leg was a burn and not some weird ai skin manisfestation as they first thought. I did have an extrahepatic lesion at the beginning of my acute period, but that's not treatment related and like my other acute symptoms, it resolved with treatment. My brain is still a little fried but I hope one day to have a normal conversation again without a dictionary in my hand ;)
mremeet, I'm low carbing also. I've lost 20 lbs treatment weight and have 20 to go.
Well now that I am 12 weeks post treatment undetected hoping(praying) for SVR at 24 with F1 mild liver damage I know I intend to drink in moderation if am am lucky enough to SVR. If I had advanced liver damage I would not, but after what is probably many years with hep c and only f1 I believe it is not irresponsible to drink in moderation if SVR. I think anyone on this web site is smart enough to know whether to drink or not after SVR and to drink wisely. (no pun intended).
I am also one of the lucky ones that feels better than I have in years after treatment.
I do not intend to drink, if I ever get rid of this dang disease. That is because in my history I was unable to drink in moderation. If I drank, I drank with the sole purpose of getting to the point of relaxation, or a buzz, or whatever term you wish to put on it. Drinking one glass of wine or one beer, was not something that I could do. If I had one rum and coke, I wanted 3 rum and cokes. So, no, I do not want alcohol to be a part of my life anymore.
You helped (and entertained) me and a lot of other people while you were here. Now go drink beer, do sex, drugs & rock n' roll, he!! wear high heels and lipstick if it takes your fancy. Have a great life,
Wow! That was sure a mouthful! Anyway, I think that most of the rational, experienced forum members here have a good feel for what previous studies, and surveys have stated. I gave you my opinion. Other members gave you theirs. If you don't agree, fine. But, this rambling, disjointed, foaming at the mouth, insulting stuff....makes me think you are in the grips of post-tx sx yourself. Possibly post traumatic stress disorder. Talk about over-reacting!!! Sheesh!
You can't just blame mremeet for his uncontrollable rambling. I feel that the effects of post TX in many, including myself has altered the brain waves in such a manner as to re-clarify one's standing in the oratory expulsion of feelings that don't necessarily reflect on the person's true beliefs, but rather on verbal diarrhea that is caused by being out of control after the repositioning or embellishing of brain waves.
There are a lot of classic examples in the criteria met by most patients who seek psychological and psychiatric care, as one of my friends experienced in a mental institute in New Jersey. The final analysis was that although the person "felt" he was cured, it was far from over, with lingering after effects of the medication. This may very well be mrmeet's case.
Have patience and realize that we too could end up in his shoes. I know for a fact that I have never returned to normal after my four treatments. I honestly don't know if I ever will, but it's better than being another statistic. All in all, no one gets out of this unscathed. Maybe brmeet is a perfect example...
mreemeet: congratulations on your milestone - and yes, the notion that some SVRs are more durable than others seems unfounded - enjoy yours!
all: when I get around to txing again I plan to repeat my post-tx experiment - not test VL for 2-3 years and see if I can tell whether I've relapsed or not. Last time I waited 2 years and guessed wrong ( I thought I was SVR but had relapsed). As far as I can tell, this sort of "blind" test is the only way of getting reliable information on whether SVR improves quality of life.
Studies like the two Poynard ones cited above seem intrinsically suspect; self-reported symptoms like fatigue and depression, though very real, are near-impossible to calibrate. I know this from experience as I was recently asked to complete a very long and thorough QOL questionnaire while navigating one of my low spots. On a bad day, it takes *way* too much energy to explain how and why you're down , let alone try to measure how bad you're feeling - just write something, get the d*mm thing over with, and keep breathing.
"Anyway, I think that most of the rational, experienced forum members here have a good feel for what previous studies, and surveys have stated."
Oh I see, and naturally you're counting yourself amongst the "most rational" lot ehh? And being that you're so rational you can all but dismiss what I've said above without taking me on point for point as meticulously described above (or providing all these myriad of conclusive studies you refer to...without referring to them at all, of course). No surprises you've decided not to provide either. And certainly no surprises that my assertion sticks in your craw because it flies in the face of your phobial theory that HCV fatigue can be imparted to others merely by casual contact or by merely being in their presence. *Even if you're an SVR and the other person is not infected.* If what I'm saying is true and that many (if not most) SVR's who previously experienced fatigue experience an improvement post tx, that wouldn't quite fit in your projective hypochondriacal theory, would it? And because it doesn't fit, it's bad. And because it's bad, it needs to be dismissed. *Right* Keep those rational theories coming DD.
Well, the remainder of this post is not directed to DD or jim or other gloomy cyber squatters. You guys are great people, kind and intelligent and very helpful to people who come here to learn and be helped. I know you mean well and have good hearts. But you don't know everything and you have your own biases and prejudices and phobias and fears when it comes to this sort of thing. Sorry, but it's true, and it's high time someone like me stated it plainly and directly on the record so someone who's trying to learn about this subject can recall it and find it in search engines. That's why I'm leaving this post here, as a sort of message in a bottle for those out there who are infected, scared, tired and with lead weights on their eyelids. A message they might be able to find, even years from now, that can help shed preciously rare light on this situation. You know who you are, and I know who you are because I was one of you for a long, long time. I used to look high and low for information and personal accounts about the possibility of resolving fatigue after SVR-ing. Those stories are far and few between, people generally don't write them. The people who get better do just that - they just get better and leave. Only the ones that still feel like sh*t, or have other ongoing problems (including emotional ones, like some of the obviously irrational phobias mentioned above) will hang around and contribute. So you're only going to hear from them, not the success stories.
But I found a way out of the fatigue and for once someone has to take the time to NOT just run off as soon as they get better, but to spend a little time to spell it out in articulate terms about what can happen when you SVR. And I most certainly do NOT believe I'm some kind of freak rarety. I believe what happened to me is fairly common - much more common than you might be led to believe by listening only to some of the gloomy online "experts" you're likely to run into on internet support forums (like here). My very experienced hepatologist told me this before I treated. I basically didn't believe him and dimissed what he said based on what I had heard here (and a few other online forums). I thought he was just saying that to be optimistic and to talk me into treatment. I had nagging fears all through treatment that I would not be rid of the fatigue based on what I heard here. But my excellent liver doctor was right, and what I heard so often here was wrong. It worked out for me and it can work out for you too. No guarantees of course, I'm sure plenty of people treat and for whatever reason they don't get a clear resolution of fatigue. But many do, make no mistake about it. So in closing, just remember: Many people who have HCV related fatigue experience relief from that fatigue after treating successfully and achieving SVR. Yes it's true! And just because there's a few online sad sacks who incessantly beat the persistent/occult infection/fatigue drum won't make that fact any less true. The end. ;-)
I get this feeling you are out to prove a point that you are miserable. You knock the members, you knock the site in your opening statement, you use the words stupid, dumb, disjointed, gloomy cyber squatters, etc..
You've been away for a while. That is a good thing...
Your comments prove my point. Your discussion at this point seems to be with yourself. My original point was only this: some get rid of fatigue, some don't. Its a mixed bag. You manage to make a Mt. Everest, out of a grain of sand. Have at it, and enjoy getting all lathered up over nothing at all. Relax, and enjoy your SVR.
I only read halfway down on comments before I thought I would add my opinion. Many people mentioned they had "allergy" problems pre-tx. Mine got really bad after Tx, probably becuase of the bleeding that was fairly constant in my sinuses during treatment. But after all the multiple drugs to try and breath and not have snot running down my face while I tried to brush my teeth (sorry), I found something that works!! I use a cold air vaporizer at night and sinal rinse (my pharmasist calls it a sinus enema). But it's amazing the difference it has made!! Maybe it would work pre and during treatment, maybe it could help? Who knows.
Knocking two of the most experienced and knowledgable members of this forum (Magnum and DD) hardly is a way to make any point whatsoever. In fact I gave up reading all the rambling insults quite a way back and have to say - I don't understand why you are going on in this major tirade over nothing. Let it GO and just enjoy your SVR!
Did you have too much suds or too little before posting? ;)
FL Gator -
"If I achieve SVR and my liver returns to normal in (guessing) 6 months to a year,"
Remember, there is NO guarantee your liver will go back to 'normal'. Be careful. SVR is a precious thing and more than that so if you liver. I'm not saying you "can't" ever drink again but - don't assume that your liver will be able to handle it. A damaged liver is still that - damaged and unless you have certainty it's just not worth the chance (otherwise why bother treating at all)?
I agree with you about no guarantees the liver will go back to normal. Stage 3 means lots of scar tissue and my concern is stopping the progression of damage rather than my liver returning to "normal" which isn't going to happen regardless of SVR. It's functioning fine right now as far as I know and SVR is a guarantee of no more damage. That's far more exciting to me than my liver dropping down a stage. A bird in the hand is worth 2 in the bush.
I also would worry pretty much that once you are prone to damage it might be easier to have it come back even IF some fibrotic reversal were to happen. I know there is no studies done on that but to me it just seems sensible. Like it could be weakened to a degree.
And you are right the whole point is NO MORE DAMAGE - reversing a grade or stage isn't the issue it's making sure we don't get any MORE damage. We could live a very healthy life with stage 3 all the while as long as it doesn't progress farther - that is the two in the bush I guess! :)
Nygirl I love ya to death, and I know everyone needs their daily drama quotient, but you're wrong. You have to actually read everything from start to finish in order to understand my response to magnum and DD. I realize that would be a very tedious and boring thing to do, so I don't blame you for not doing so. But if you have to weigh in and pass judgment, at least read what was said from beginning to end. And if you still feel that way, that's fine you're entitled to your opinion. But I don't feel that way, and I'm also entitled to my own opinion - especially if someone is speaking directly to me in a derogatory manner (as magnum was) or in a quasi-derogatory/dismissive manner (as DD was). That's why I substantiated everything I said with concise logic. And as far as being drunk, I know you're just being facetious and perhaps a little sarcastic. But if you think I've said anything above that's incorrect (which is what happens when you're drunk), then please explicitly point it out to me so I can understand what you're talking about.
I am guaranteed to have a normal liver...I am stage 1 and WHEN I reach SVR (cause I will accept nothing less). I will do everything needed to heal my liver....I'll post the list of suppliments I plan to use when I am done with TX...AND THE RESULTS AS THEY HAPPEN!
and then I will celebrate with a beer (or two)...with my tacos...or nice merlot with my spaghetti and meat balls.
mre - wow nothing like making up for lost time.....speaking of which I think I lost 2 hours reading this....but good stuff (mostly)
Well I have to tell you I have always been an energizer bunny before tx - even had a great deal of energy with the HCV for 20 some odd years until I had to leave my job on disability a year ago – think that’s when it got very chronic.. Even with severe RA on top of it....but the 13 weeks of tx were the absolute worse fatigue wise - but not the kind you can sleep - I had insomnia, anorexia, migraines, RA flares, rashes, heart problems, nausea, could not catch my breath at all - had to stop riding my horses and spend the last 1/2 bed ridden before the autoimmune got so bad they had to take me off July 4th.
But I do think I am still UND (was 203 at day 10 and UND at 3.5 wks and am a 2B.) But I am faced with a whole new dilemma (my journal time frames it). Since I am one of the lucky 4% that get's their autoimmune turned on by this treatment we have to figure out how to turn it off. The Enbrel I was using for years lost it’s mojo mad makes me worse now...so the only option left is another fun chemo used for Lymphomia (rituxan) But unfortunately it also may bring back the virus (or so it is documented with Hep B). As usual there is no documentation for my situation so my docs are pow-wowing at a convention next week to try to figure out what to do - now I am popping steroids and pain pills and dreading every minute of it.
Researching all the natural stuff again...Too bad in the 14 yrs I have had this insidious RA disease I have tried all the meds and there are none left except this one (that also causes deadly brain infections) So from the frying pan into the fire I guess. I'd wait a few months before starting the infusions but my joints are deteriorating before my eyes - I can barely hobble....so let's see would I rather ride my horses or drink champagne - the answer is both! I had some joints injected today so I could manage to finally leave the house and get my horsey fix. Boy did I feel better.
Here is what I posted when I first considered treating - it still runs true
Here's my list of reasons I want to tx now.
1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse every day)
3.) New Drugs that are promising are at least 3 years out.
4.) My anxiety will increase with every day that I wait
5.) I want my energy back!
6.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
7.) I want to show my horses again
8.) I want to be normal again which includes fine wine with fine food at fine restaurants
9.) I want to follow my dreams and goals to be the instrument of inspiration that allows people to realize their full potential and discover their dreams.
10. I want to move into my dream horse ranch in La Cresta (yes kinda by you Mre) and enjoy the **** out of my life…
So here is a toast to "good buy dragon - hello world" for all of us…and Andiamo we are going to have that SVR party – sounds like Mer can join us…and all you other fine people as well…..cuz I am determined to get better!!! We are going to rent that great big boat and sail the bay with a big spinnaker that says SVR was our buried treasure as we slam margarettas and champage listening to Jimmy Buffet....
Congrates to you all! My turn will come....
gee I did a long one too - look what you started ..cranking these steroids helps...couldn't even type a few days ago
jmjm....Well, I knew there would come a time -- and a post -- where we would be in complete agreement :).........
LOL! Almost anyway….as the thread progressed!
Mremeet.....PK sent me this thread as I posted one on 'what the hell is with this middle fat' ! While I am only 133lbs, was 126 at start of tx.....I have also always been fit, slim, good muscle tone, etc. During tx I gained a few, but sure that was from sitting on my arse the whole time and also eating whatever I could, often being things I would never even touch. My sis came over and saw chips, cookies in my room and about fell over. Threw tx, it's anything you can eat! Plus the loss of muscle. Pre tx I was slim, with not much work. Fatigue was ruining my busy, active life for a few years before dx, my eyes always looked like I'd smoked a joint of good stuff! I hated that, as I don't ,yet always looked stoned. Friends would say 'you can see you don't feel good in your eyes! Mental inclarity, 'ditzy' syndrome was common. Finally getting dx'd, while disheartening, was a weight off of my back. I had lied and hid the fatigue for years, feeling lazy. I had lied when I felt terrible, feeling like a hypochondriac after continually being told I was 'fine'. Dx was finally an answer for me. I wasn’t lazy, it wasn’t all in my head…I was sick!
Near 5 mths post tx.....finally feeling better, more clarity than I've had for years, fatigue is much better (most days, still some) but better than before by far. Funny thing is I always healed fast, even with Hep. I get a cut, a flu, I heal quick. That is the same now. BUT....while I am still 'small' I am gaining fat cell's like crazy :( And yep, in the belly, hips. I am back to busy, up and going all day, back to yoga, back to eating excellent...what the &^%$ is going on here , I’m saying! I've watched my sister battle weight, tearfully-frustrated , for years and while most are saying 'yeah right' to my 'weight gain'....it bothers me a lot as I'm worried it won't level off, stop, go back to normal. My metabolism is definitely whacked out! It's like I’m getting a lot of fat cell's I never had before, which s*cks as I believe once an area accumulates them, they pretty much stay and are easier to gain there, etc. (from a womans side, can't I get these *&^%* fat cell's in the chest and my cycle is also way whacked out) Your suggestion on the low carb is my next step, tho I eat really well, but my morning consist of yogurt w/fruit and that I love, and the rest is all organic, low fat, etc. By normal standards (metabolism) I should NOT be gaining body fat. With all the good tx has done…tho not during ….UND 12 wks, post, feeling better, this is a part that worries me also. Face it, we all want to look our best and I want to add to these pretty WHITE eyes I have now ! I’m happy to read it seems to be leveling off for most of you. My first thoughts the past few weeks were just as you said, this tx whacks our systems all over the board. I think many functions in our bodies are totally confused!
Thanks for this thread, I needed it. Have to re-read thru the post by others.
Thanks for a very informative post and congrats on your successful treatment. I have a very similar story, diagnosed with subtype 2 hep c (the most treatable type, thank goodness) in 2007 at age 50, suspected contraction in 1977 (major shoulder surgery in which blood products were used) but no noticeable symptoms until around 2004 when I started having bad episodes of fatigue. Then I couldn't get the treatment for another FOUR YEARS because of our "best health care system in the world" hassles with health insurance (was a contractor without benefits, and couldn't get insurance for most of that time because of the freakin' pre-existing conditions crap that insurance companies used to be able to screw us with - think about my experience next time you diss "ObamaCare", any of you ignorant haters of it out there). Those were the most stressful and depressing four years of my entire experience just because of how effed up it was not being able to get a treatment that in places like Canada or Europe would just be taken care of immediately. For pete's sake, what if I had developed liver cancer during that waiting??? By the time 3 years of that time period had passed by I was in such a depression I started having suicidal thoughts (probably also due to the disease progressing and the more and more frequent horrible fatigue attacks, which were making just holding a job harder and harder). But then I was lucky enough to land a "regular" job with excellent benefits and finally got the treatment. Tested undetectable 2/3 way thru the treatment and now over 2 years after finishing treatment am still undetectable/SVR. My thyroid did take a beating though, and I now have to take thyroid supplements to correct low thyroid levels, but that seems to be going ok (just a small pill every morning). Fortunately I didn't have too much difficulty with depression during the treatment, which I had been worried about before starting the treatment because of the mental state I was in after battling health insurance companies for 4 years trying to get treated. Needless to say, my life is drastically better now. Like you, I eat extremely healthy, fairly low in carbs and plenty of fruits/vegetables, and I do some moderate exercising every day (bought a nice motorized treadmill for $199!). I would tell others basically the same message as you - IT CAN BE BEAT. If you ARE able to get the treatment and are just apprehensive about it because of what your docs tell you about the risks, side effects of the treatment, etc., have some faith and courage and just DO IT. Taking the risks is better than doing nothing because although not guaranteed, you just might have good results.
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