Avatar universal

Post TX Side Effects for the Long Term

Good thread and badly needed IMO. Thought I'd continue it for others to chime in if they want.

First, what Snookmeister said "That what they are experiencing, is not in fact "rare", or "uncommon", but in fact the reality for MOST.. "

I've been dancing around the "most" word myself, but it sure seems that way at least for those of us geno 1's who went 48 weeks or more. "Rare" I don't think so. Thanks Snook for being so forthright.

Looking back, I do remember treatment being harsh and hard, but it was always presented in terms of the treatment period itself. Not what I might expect down the road after treatment. Being the red-blooded male I grew up as, once I started tx became a challenge to overcome. The only problem is that the prize for many that "win" this game may be worse than what they had before.

As others have so well put it, doctors are focused on treating the liver and the side effects during the treatment period. Afterwards it's "adios" in either a nice or not so nice way. Whether they don't have the time, inclination or motivation doesn't really matter. What matters is that objective information isn't getting out there when it really matters -- when someone sits down with their doctor for the treat or not treat decision.

I used to scoff some at alternative treaters like Dr. Zhang who preached that the real issue was fibrosis progression, not the virus itself. If I had to do it all over again, I think I would have given him a try first, even as a stage 3.

-- Jim
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Avatar universal
If that didn't work out then maybe combo or whatever is available.

I just want to be clear that I'm grateful that combo treatment exists for those that need it based on their own informed personal decisions.

The problem is I don't believe all of us were informed properly. Hopefully this format will help some in this respect. Hopefully better treatments will soon become available.

Happy Fourth to all!

-- Jim
Avatar universal
Jim, just a word of encouragement for you. 15 weeks post seems long but I recall that at seven mjonths post tx my sleep was disrupted regularly-I would sleep 3 hrs max and then be wide awake. My thinking was still major brain fog and emotions extreme. Improvement was hard to see cause it was small increments. I mentioned before that depression was a harsh reality on and off. By one year post I was me again. Give yourself a break and only expect slow recovery. I'm truly hoping for the best for you-you've earned it(of course). Frank
Avatar universal
Thanks Scruffy. Good to hear from you and hope this finds you well. I realize the final word isn't in for me at 15 weeks post treatment, but I still don't think many of us were given an objective overview of what we might expect.
Couldn't put my finger on an essay posted by Zhang on the net earlier but here's an old exerpt from another alternative treater who quotes Zhang. Note it appears Zhang treats based on both liver enzymes, viral load and biopsy results.

""Pure water has no fish"

Many patients worry that they are carrying a virus and have not been cured. Although their liver functions are normalized and they have a normal or near-normal quality of life, they feel uneasy that they still have HCV in their body. I tell them that everybody carries certain viruses in his or her body. It is abnormal not to have viruses in our bodies. Some viruses have names and can be tested; some have no names and can't be tested. Viruses were the first living things on Earth and are one of the major causes of mutation. Bad mutations die off and good mutations become higher living things. We human beings are the highest living things on Earth-thanks to the virus. In millions of years of evolution, the human body has adopted mechanisms to deal with viruses. Given enough time, it will learn how to coexist with a newly invading virus. Gradually, our immune system can control it, keep it at bay, and prevent if from further harm.

No living things are pure. There is a Chinese saying: "Pure water has no fish." Why do we want our bodies to be so pure, without viruses? Worrying can only weaken the immune system and make the virus stronger. From the experiences of many of our HIV patients, we have seen the coexistence with the virus is possible. After coexisting for a sufficiently long time, the virus becomes less harmful and finally becomes harmless, while at the same time our body becomes stronger and can contain the virus better.

This description freely intermixes the situation that exists within an individual and what happens over a very long time in relation to the entire population. Yet, it helps to address one of the key problems noted with American patients who seek out Chinese medical therapies for hepatitis C: they are very anxious and worried about having the virus even if it is producing no evident adverse symptoms or notable liver damage. One of Dr. Zhang's formulations is called HC Virostatic Formula, used to suppress the virus and lower the viral load. It contains sophora subprostrata (this is a source of the anti-viral alkaloid oxymatrine), hu-chang (a broad-spectrum anti-viral agent), isatis root and leaf, and houttuynia.

It is not always possible to clearly differentiate the use of one formula from another in cases of hepatitis C. However, a patient evaluation should include determination of the extent of liver inflammation (as revealed by liver enzyme levels), to determine the need for liver-protecting substances (such as antioxidants); the viral load (as revealed by PCR test), to determine the need for anti-viral substances; the extent of liver damage (fibrosis and cirrhosis, usually determined by liver biopsy), to determine the need for blood-vitalizing and lipid regulating herbs; and the symptomatic presentation (TCM analysis), to determine the need to treat conditions such as damp-heat and spleen-qi deficiency.

Reference: http://www.itmonline.org/arts/hepc2k1.htm

Avatar universal
Hi all and Happy 4th if you can.
I am responding to "post tx sides for the long term".

I started tx 13 weeks back with type 3a and had little symptoms from hep c but showed elevated alt and ast but not very high, general health pretty darn good. Dr said no bx necessary as I decided to treat anyway. After 4 weeks UND and ast/alt normal range. I will visit the Dr Thursday to get results from 12 weeks PCR. I believe it will be UND. I have had some sides but the Riba Rash kicked in 2 weeks back and I am ready to QUIT. I can probably have a SVR. Let's say I don't have a SVR by relapsing in the future, the same could happen after 24 weeks tx.In the near future it might be worth waiting for vx950 or whatever else, if I relapse.The long term sides from Ribavirin and Interferon I am not sure about - let's face it, whose Dr does discuss this. Mine discussed a lot of stuff but now I would like to address the long term sides with him on Thursday. I thought I would stay the 24 weeks but if UND at 4 and 12 weeks it might be SAFER for me to QUIT and retreat with less poison IF and when that time arises. I am only stopping tx after being UND at 4 and 12 weeks with little or no liver damage. How wrong a choice can this be??? The poison is pretty bad too, & maybe I have achieved SVR.

Now that the sun is cooler I can leave my home to celebrate the 4th - no booze of course. Don't like the sun on tx. I'll check back later to hear how crazy or not ya'all think my potential choice might be, give my posted "stats".
86075 tn?1238115091
Yeah, that kind of through me for a loop too, ha ha! Jim must be trippin!!!! Too many Green Dragon Rolls!!!
Avatar universal

We've had some 2's and 3's who treated less than 24 weeks and did well. I believe it depends on pre-tx viral load and being non-detectible at week 4, but I know more about geno 1's so maybe others will chime in. But if memory serves me correct, one of the short course studies did 12 weeks with Peg Intron but 16 weeks with Pegasys. You and your doctor might want to take that into consideration.


That quote on viruses was from Dr. Zhang, not me. As to viruses being alive or not, I assume they're alive since we kill them, don't we LOL.

Didn't mean to scare you and didn't say I wouldn't have treated given my stage 3 status. Just said maybe I should have tried TCM first and I'm surprised that you're surprised given your holistic outlook. In fact, I did do just that but researched it out badly -- actually didn't research it and saw a Japanese herbalist/acupuncturist on the recommendation of a friend. One week into treatment my enzymes went sky high and I stopped. Maybe the guy gave me the wrong herbs, I'll really never know, but Zhang appears to have decent credentials, lectures frequently to leading doctors, and apparently takes enzyme levels, viral load and biopsy score into consideration -- so in retrospect, it seems like an avenue I might have explored before trying combo treatment, which I was always reluctant to try. However, in your case, since you exhibit so few sides during treatment, I have a feeling you'll do just fine after treatment but if you read the previous thread by the same name, you'll see that some folks don't do so well.

Take care and have a happy Fourth!

-- Jim
Avatar universal
There is a tremendous debate about this question - scientists do not agree on the answer.  Some people consider them to be just a bunch of chemicals.  Other people consider them to be living parasites, because they require the metabolic
machinery of host cells to survive.  But they do reproduce, and they do have genetic material,  so many people consider them to be the simplest living organisms.  Probably
the safest answer is that viruses have both living and nonliving characteristics.
Avatar universal
Yeah, that kind of through me for a loop too, ha ha! Jim must be trippin!!!! Too many Green Dragon Rolls!!!
LOL. Well, if you can do combo treatment as you threaten :) I can suggest TCM :)

As I mentioned to Rock, that was my original plan anyway, but got scared off from a bad experience. As a stage 3, it's a real hard call to wait on combo treatment too long (I waited 3 years) but if I had to do it all over again knowing what I do now .... well I guess that will never happen right? But looking back I was definitely put into the "system" by the docs I saw and I guess that's what they do.

Have a happy Fourth and thanks for the laugh. BTW not sure what green dragon rolls are except they sound very touriste LOL Tonight I had the sushi roll combo  -- tekamaki, yellowtail scallion and California with edamame and a bottle of Kirin Light. Was going to swear off the alcohol for skin, not liver reasons, but felt I needed it tonight.

Have a happy Fourth!

-- Jim
Avatar universal
Kalio says: Probably
the safest answer is that viruses have both living and nonliving characteristics.
Sounds like some of us during treament :)

Have a happy Fourth!

-- Jim
Avatar universal
You have already started.  I would encourage you to continue.  Isn't treatment for type 3's only 24 weeks?  You can do it.
Avatar universal
Hi, I just wanted to chime in after seeing your post.  Jim is right on, they have done some short course studies, 12 weeks with peg intron and 16 with pegasys.  I am (and hopefully WAS) a geno 2.  In these studies (at least with the peg intron) participants were on weight based riba.  

From the start, I knew that if I was undetectable at week 4 I would give the short course a try.  Ultimately, I ended up going for 20 weeks because I had been underdosed on Riba for about the first 10 weeks (though still undetectable down to 50 at week 4)
I honestly believe these drugs should not be taken lightly and in some cases are worse than the disease.  Obviously this is a very personal decision that only you can make, but I just wanted to let you know that I completely understand where you are coming from in making that decision.  You will find support here regardless of what you decide.  I don't think you are crazy at all!

I was still undetectible at 4 weeks post, and am anxiously awaiting a 12 week test, but that is not for another several weeks.

Good luck with your decision.  I kept myself going through those "extra" weeks by saying that I would finish one more box of shots then re evaluate.  Ultimately I came to be at peace with stopping at week 20.  In my mind, 4 weeks wasn't going to make it or break it for me.  Keep us posted!
131817 tn?1209529311
I agree with Alady. I can't imagine going this far and stopping. Hopfully you will have SVR if you stop, maybe not. If you don't you  will wonder if you had just gone a little more...

God, I know how hard it is. I feel like the poster girl for sx. Everytime I think I feel better something else hits. I understand there is a QOL issue here, but you only have a few more weeks. Me, I haven't gotten to the point of wanting to quit yet. I quess you could call me one of those obsessively GUNG HO treaters. At least for now. I didn't feel good before tx and don't want to go back to feeling like that either.

Reading all this about post tx gives me pause. I have always agreed with Jim about not treating and waiting if possible. These drugs are too toxic, of course they are going to have a lasting effect. I wish I knew what my liver damage is now. Not that I will stop tx, but if it gets so bad I can't continue I would know I gave it the best shot I could and know I could tx again another day.

If I am a stage 3 or 4, I feel like I have to give it an all out shot to work. I'm not getting younger, my liver is not getting better, my QOL was suffering before I started.

Everything is a risk. I quess I am saying I am willing to risk long term sx to get rid of this dragon. Hopfully some QOL will come back and I will live to see my Grandkids graduate college. I'm not sure that would happen if I dont' give this a shot. My best friend died of liver cancer due to Hep C. He left 2 young kids. I don't want this to happen to me.
Avatar universal
of course, no one  really knows how much more 'benign' the new poisons will be, or whether they will even be. Will they be easier, less side effects? speculation and guesses only.

I for one do not believe that all the changes that happen during tx are negative ones.  I won't hesitate to say that most lingering things post tx, are not severe, and crippling conditions. So, is the disease worse than the tx, or viceversa?  It appears to have no conclusive answers.
Avatar universal
About ten years ago, I did almost a year of monotherapy (interferon alone, no riba). My post tx biopsy showed less liver damage than my pre monotherapy biopsy. Soon after treatment the virus came back, I relapsed. The treatment side effects went away in a few months, and I felt very good. I had so much energy and my mind was very clear, and so I took flying lessons and got my private pilot's license that year. I felt very well even though I hadn't beat the virus.

This last year, I did Pegasys and Ribavirin therapy. I just finished tx; I took my last shot about four weeks ago. I'm already feeling a lot better: my rash is gone, my mood is good, my memory has improved. I still have a problem getting to sleep at night, and my knee joints hurt some. My 12 week, and 24 week PCR (<50) were undetectable. I forgot to get a PCR at 48 weeks and so the doctor had me take one at one week post tx. That one week post tx PCR was  also undetectable. The doctor recommended that I wait six months for my next PCR, but I can get one sooner if I really want it.

I'm feeling very happy and well. If the virus comes back, I'll wait for the new meds; I was only stage 2 before this last tx. I'm glad I did treatment, but I think it was wise not to extend treatment beyond 48 weeks and best not to double dose. My doctors at the VA gave me wise, prudent treatment. The treatment was no fun, but I did it, and now I'm feeling better every day. Now, perhaps I'll do something exciting such as take flying lessons again; I could get my instrument rating. I'd also like to do some traveling. I feel very positive about life.

I hope people doing treatment will have a positive attitude; it's important to keep your eyes on the prize and go for it. Most people get through treatment and then go on with their lives. Don't worry too much; worry won't improve a thing. I remember when I was on tx, it was hard not to worry. A positive attitude will help you much more than worry. Don't worry.

Avatar universal
I had a wonderful 4th of July. A friend brought over his barbecue, and a lot of food. Three other friends came over as well. My sister came over too (she's just back from a year in China - she taught English last year in China).

At the cookout, I ate two hamburgers, a vegiburger, one hot dog, some chicken with peanut sauce, salad, potato salad, some turkey, chips and dip, and two hot fudge sundaes. It seems that my appetite has come back. LOL

I didn't go to see the fire works down at New Haven harbor. I like to take my dog with me when I go places, and my dog is afraid of fire works. My dog had a good time at the cookout with me; she got a lot of treats - hamburger, hot dogs...

I do feel good; life is good. I'm so happy tx is done and that I did all 48 weeks. Now, I'd like to forget about treatment and live my life.

Avatar universal
i can't imagine dropping out at this stage. good luck.

i just finished tx 3 weeks ago and feel real weak and have immune system problems. looking back i have LOST a year of my life on this treatment and will not repeat it if not svr. if i were a 1 or 2 with no sides or elevated blood levels i would not give in to fear and jump at this poison. to wait 2 or 3 years to see what advances are made is no big problem. i NEVER let having hep c affect my life and for 9 years after dx i almost forgot i even had it. it is like prostrate cancer, most men die of old age before it gets bad.
the new drugs claim they will be real short tx.,no harsh sides and almost certain svr. if i had the chance to wait a couple years for this tx or give away another year of my life overcome by fatigue headaches and fog i would wait myself.
my opinion after tx.
i read the info sheet in the peg and the table of sides show high odds we will have some if not many of about 30 different sides.
Avatar universal
Hola guys
You're scaring me. At first I thought it was good to wait for newer drugs (I was F0-F1 in my first fibroscan) and supposedly I had 1 & 2 genos. But know after 3 PCRs I'm a 2b confirmed but my fibroscan reads F3 (since november? is that possible?) supposedly due to a reaction to vaccines...
So then I was convinced to go for tx, but reading this is confusing me a bit again (long timers & informed posters like yourselves are reconsidering TX after doing it?...Shoot, I'm getting in the twilight zone...
I'm starting to not trusting my doc (he said that TX is really doable, no prob :-()..Is he patronizing me? we should start in november he says...when my enzymes drop a bit...

saludos to all of yas
Avatar universal
and by the way, I have no extrahepatic symptoms whatsoever but a mild chest discomfort when seated and right after eating
VL 5 millions, ALT 195 now, was 300 in march, AST 100 geno 2b
Avatar universal
I agree, Spain is the best destination in Europe. Wonderful people,food, architecture and my favorite place Barcelona.
Scuba, please, do not take opinions of people on the internet as gospel and let it affect your life and health decisions. These "long term " side effects that people claim are from tx are just that, claims. You do not know if the people having these problems had them before treatment or if they appeared due to their being middle aged or if they are somehow related to the treatment. You do not know if the person making the claims is now using alcohol or other medications or eating poorly or is overweight or taking other drug therapies, you do not know all the factors involved and there are no studies backing up the so called "long term side effects" at this point. ALL medications have some risks, no matter what drugs you take. It makes logical sense that a portion of people who take these medications will have problems that could be related to taking interferon/riba long term but you have to weigh those possible and uproven risks against the risk of having HCV which HAS been studied and has been proven to potentially shorten your life and increase your risk of contracting liver cancer and other life threatening illnesses. Ask your doctor about how many of his patients return after treatment with long lasting complaints such as these. You will have a hard time finding studies to substantiate these claims. If fact, not one of the people claiming they have lasting problems from interferon has posted a study or any informtion from the medical community verifying these claims. I can't find any that address it either so if you come across any, please share them here. I believe the reason that you can't find information on it is although milions of people have treated with interferon, it is a small group of people that unfortunately have problems after treatment, the actual cause is unknown and unproven. Maybe they are from having the tx, maybe from having the virus for many years, maybe from aging or maybe they are ailments the person either had before tx or developed after tx or if it is related to tx, we just don't know. There are too many "ifs"
Talk to your doctor, seek a second opinion if you are not happy with your doctor but do not let anything you read in an internet talk group affect your medical decisions or sare you unnecessarily. Stick with proven scientific facts when making health decisions. If this was a widespread problem, don't you think the medical community would address it? Do you think the medical community in the world at large is just ignoring patients complaints about these "long term side effects" and refusing to study the issue? What possible reason would they have to do so?
The whole process of finding out you have HCV and doing the treatment are very scary as it is, do not let unproven claims influence you Keep in mind there are risks with ANY drug therapy. Stick with your DOCTORS advice and proven SCIENTIFIC FACTS and studies.

Avatar universal
You shouldn't be scared into not treating by problems people here are having with long-term side effects, anymore than you should be scared into treating by those who play up the potential damage of the virus those with little or no liver damage compared to the risks of the treatment drugs themselves.

If you've read this thread and another (below) by the same name, you'll  get a variety of opinions and experiences on this issue. Both sides seem to agree that few studies have been done so that leaves us with mostly anecdotal data that at least many of the doctors who have treated those here do not seem eager to collect and publish. You might also want to check some other discussion groups like "Janis and Friends" http://janis7hepc.com/index.htm and see what they have to say.

I wouldn't even venture what to suggest given you're a geno 2 with two conflicting Fibroscans in less than a year. If you're not comfortable with what your doctor is telling you, maybe it's time for another opinion, even if you have to reach outside your country via phone or email.

Back to the side effects -- working in your favor is that as a genotype 2, your treatment probably will be limited to 24 weeks and possibly even 12 if you and your doctor decide and qualify for the short course route. Although there are no rules in this, my impression is that a shorter treatment such as 12 weeks probably will present you with less potential sides, both during and after treatment, then 48 weeks or more of treatment that many of us geno 1's do.

All the best, and again, don't make your decision to treat -- or not to treat -- out of fear. Try and get as much information as possible, weigh the risks and rewards, and then pick a pony that you like, not what anyone else likes. Because in the end it's a bit of a gamble either way and you're the one with something at stake.

Hope this finds you well.

-- Jim

-- Jim
Avatar universal
so many times these threads come around, speaking of the effects of tx and how they are still lingering, etc. For one thing, most of us coming out of tx, are impatient to get on with our lives and go back to normalcy. and dissappointment comes when it does not happen quickly. Your body has been exposed to medications for 48 wks or more, you have endured oxygen deprivation to all organs, which can't be good in of itself and might have caused irreversible damage. The medications are strong and have a huge impact, but have you seen any death claims on tv or heart attacks increasing (as with Vioxx), of people treating for HCV? Are our drs and drug companies doing such a good job of hiding these secrets that not even the most zealous reporter can't get an inside tip?
When I came to this site, I was told that tx could trigger things you were predisposed to, and aggravate existing conditions. I also found out that it rehashes old stuff(like bursitis). That is exactly what happened, I felt my old aches aching more, all pain enhanced everywhere, nothing pain meds could not handle. I felt new things show up, but none life threatening and none have remained. i thought I would lose my thyroid because my mom has that problem, it did not happen.
Things are post tx, basically the same as before tx, and extremely better than while on tx!  Maybe the so call, I have no symptoms from hcv is true, or maybe they are so mild, you don't notice them until the tx enhances them.  
I believe that it is good people are aware of effects that might happen to our bodies, but when we talk about post tx effects, tell us if you ever had any of those before tx, did you even have mild arthritis or stomach problems? How were your symptoms before tx? So many people just tell what they are feeling post tx and do not mention what was present before, and it gives the impression that all of it is brand new as a result of tx. How much  were we forgetting before tx? Is it comparable to the post tx issues? People that write for a living have mentioned word recall problems for a long time post tx, they are a good example that tx might have caused it, or maybe the oxygen deprivation in the brain from the anemia did it. If things are so bad post tx for some, maybe they should be reporting to the CDC or their Dept Of Health. If hundreds complain, someone would have to listen. How else did the Vioxx thing started?
I always find myself on the other side of the equation, because I don't see this influx of horrible long term effects causing crippling conditions in the majority of people, is not minimizing any individual's pain or negating it, but I can't promote the 'theory' that tx is causing extreme changes that are disabling people left and right.
One thing that stands out, most people are glad that they are SVR, regardless.
I am glad I am SVR, sad that the pains did not go away with the virus, and elated that I did not have to wait until the damage got worse. I had the choice to rid myself of the virus, while I was faily healthy and free of significant damage, and I took it, and tx did not inflict upon me any more than HCV did.
your choice, no matter what stage of damage or what anybody says.
Avatar universal
Bob I'm also a pilot will start treatment in Sept. 52 year Old male Geno 2b stage 2 grade 2. was just wondering if you were able to do any flying while you were on TX are did sx's keep you grounded. If I keep reading this thread i might have to postpone TX LOL. You should defintley go get your Instrument rating

Avatar universal
Welcome to the forum. Wow, two pilots among us. You guys are brave!
Here is a study on the effects of interferon on your brai function on treatment with interferon

Avatar universal
We're not doctors here. Scuba, it might be a good idea, if you feel that you have a good doctor, to follow your doctor's advice.

A few months ago, on this web forum, people were writing about extending tx beyond 48 weeks. My doctor said I shouldn't extend because I was undetectable at week 12. People on this forum advised me to get a second opinion. This advice caused me to question in my own mind my doctor's advice and competency. Many people on this web forum were extending tx and some were double dosing. My doctor said I shouldn't double dose, and that I didn't need to extend tx. I did try to get a second openion from another doctor, but was not able to because I don't have insurance.

The people on this forum who had me feeling that it might be wise to extend treatment past 48 weeks are now saying that treatment might be more dangerous than the hep c.

I really think it's best to follow doctor's advice and that we on this forum should try to share our experience and hope. A positive attitude is important during treatment. Worry and second guessing takes a lot of energy and doesn't help us get through the treatment.

That's my two cents worth.

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