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151263 tn?1243377877

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...)
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151263 tn?1243377877
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. ;-)
151263 tn?1243377877
(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!
315996 tn?1429057829
Hey thanks! Your post are the only long posts that I read, and well worth it.
217229 tn?1192766004
Love ya dude --- good to see you back and back into your fantastic writing style.

Hugs to you - and EXCELLENT on the SVR.

Meki
Avatar universal
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.
Take care,
Ev
Avatar universal
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.  : )

take care,
Willy

Avatar universal
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
CS

Avatar universal
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

geterdone
Avatar universal
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.
Trinity
Avatar universal
Excellent post and much needed too. I hope to read more of your journey soon.
96938 tn?1189803458
Good to hear from you.  The surprise to me is that I thought you lived in Maryland or Virginia.
Avatar universal
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.
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