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!
Hey thanks! Your post are the only long posts that I read, and well worth it.
Love ya dude --- good to see you back and back into your fantastic writing style.
Hugs to you - and EXCELLENT on the SVR.
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
Ditto ditto and ditto,
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.
Excellent post and much needed too. I hope to read more of your journey soon.
Good to hear from you. The surprise to me is that I thought you lived in Maryland or Virginia.
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 to see your post. I am glad to hear that you are feeling good.
I am six weeks post tx now, still undetectable and feeling good.
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 again for the post.
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.
Thanks, mre, and congrats
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.
Take care and keep us informed!
I'm quite new here. Dx in March and waiting for results. Wanted to thank you for the great insight! It's always good to hear what lies ahead... especially on subjects which are not often touched.
And congrats on your SVR!!!
I sure recognize the post tx appetite! Food just tastes so good now! For a year and a half my kids thought I was anorectic... not anymore!
Congratulations to your SVR and post tx recovery!
Glad to know some people return to good health and energy.