Post TX Side Effects for the Long Term

[jmjm530]

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.
http://www.dr-zhang.com/drweil2.htm

-- Jim

[jmjm530]

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

[scruffy]

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

[jmjm530]

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

[hepcinsd]

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".

[Forseegood]

Yeah, that kind of through me for a loop too, ha ha! Jim must be trippin!!!! Too many Green Dragon Rolls!!!

[jmjm530]

Hepc,

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.

Rock,

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

[Kalio1]

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.

[jmjm530]

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

[jmjm530]

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

[Alady1620]

You have already started.  I would encourage you to continue.  Isn't treatment for type 3's only 24 weeks?  You can do it.

[amommy]

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!

[sfbaygirl]

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.

[cuteus]

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.

[Moniker]

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.

Bob

[Moniker]

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.

Bob

[bobbyullc]

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.
bobby

[scubadiver30]

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

[scubadiver30]

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
gracias...

[Kalio1]

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.

[jmjm530]

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

[cuteus]

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.

[welderman]

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


Lynn

[Kalio1]

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

http://neuro.psychiatryonline.org/cgi/content/full/11/3/343

[Moniker]

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.

Bob

[Moniker]

It would have been a very bad idea for me to try and fly an airplane while on treatment. I grounded myself. I was light headed at sea level. I'd get road rage driving my car. I was not going to fly an airplane, and I didn't even feel motivated to fly an airplane. I needed as much rest as I could possibly get.

You'll probably feel some of the same things I did. It's best to take it easy until you've finished treatment.

Good luck to you, and to me, and to all of us. I hope treatment works for us all, and that new, better and easier treatments are coming along very soon.

Bob

[Kalio1]

I am certainly no pilot, but on treatment, especially in the first 6 months I had to stop driving the car beccause I felt I was a danger on the road. I had two near misses and found my concentration was sub par as was my abiity to react quickly.
In addition I have read quite a few atecdotal stories about others having impaired driving ability. As you know, treatment affects each person differently so maybe you will ahve a different experience but I'd hate to see you compromise your safety.

[motheroffour]

Hi, I posted the original question a week or so ago.  I think anytime you put any drug into your body you should understand the affects positive or negative, during and after.  I asked the question because I could not find any information about long term side effects of the drugs that are used to treat Hep C.  I'm surprised that people have reacted strongly to the dialogue.  I think this is a very good thread and should have no more bearing on people's personal decisions that a discussion of the side effects.  Had I not read through the three threads, I would have assumed that stop the drugs, stop the side effects within weeks.  It is easy to read these threads and understand that just like the sides from the drugs themselves, the post treatment effects vary in severity and length.  I don't think a post treatment discussion will deter people from treatment unless they are looking for one little thing to deter themselves.  Overwhelmingly this board is pro-treatment IMHO.

[cuteus]

I was probably one of the folks that advised on getting a second opinion, but not on extending, since you were negative at wk 12. I would only suggest that to folks with significant liver damage, even if undetectable at wk 12 and only if tx was not creating havoc on your body. If tx is not causing extreme physical problems and a person can manage to continue, why not? Even when undetected at wk 12 or 4, for that matter, people relapse with 48 wks of tx. Those for which 48 wks was enough are in the fortunate 50%. Plus, I am still not saying that tx is more dangerous than hep c. No one can make that conclusion at present.

I am always happy for those that achieve their cure, whether it took them 12,24, 48 or more wks! There is always room on cloud 9 for more!

[welderman]

yea I figured I would be grounded. Didn't know how bad the brain fog would be I hadn't heard problems driving though. I guess I'll find out soon enough.

[Kalio1]

Just for the record, I was UND at week 12, enzymes normal and relapsed after 24 weeks of tx. My doctor then recocmmended I continue treating for an additional 48 weeks, 72 weeks in all with a 2 week break from week 24 to 26. I am a 3a with no signs of damage.
A biopsy was not recommended or done because the doctor felt there were not signs to warrant it.

[Califia]

I’d like to direct my remarks principally to Jim.  But first, a little reintroduction:  I was Geno 1, diagnosed in 1990, tx’d with monotherapy—a very unfortunate experience in which I lost my thyroid, and tx’d again just recently for 60 weeks with Pegasys and riba.    I, too, have lingering problems from tx, none of them present before this round of drugs.  (Yo, Cuteus, this clarification’s for you!)   But I am very happy to report that I seem to have cleared:  1-yr PCR’s coming up in mid-August, which will more definitely confirm SVR.  I won’t breathe easy until the 2nd year test, however.  I still avoid alcohol like the plague, and treat myself very carefully, as I feel that my hard won “undetected” status is a beautiful but fragile thing.

It grieves me, Jim, to see you second-guessing yourself about the correctness of your decisions.  But I am also happy to see your raise some important questions abut approaches to treatment.  I am one who came to TCM early on, after my first unsuccessful experience with interferon.   Well, actually before that:  after diagnosis, I saw two separate Chinese herbalists whose prescriptions essentially made no difference on my enzyme levels, but who at least calmed me down and offered me the consolation that I was in control, more or less.  Then I found a third when I was in pieces after my first round of interferon, a practitioner whose formulas and good counsel I ended up taking for fifteen years.  I was a vigorous proponent of Chinese medicine when I was active on this board, and I have a pretty fair laywoman’s grasp of the terrain.   So let me say this to you:  the one thing and only thing you can be reasonably certain of is the uncertainty of it all.  I resorted to tx because the odds had improved so much (from roughly 10%--and that figure included ALL genotypes, as there was no genotyping back in 1990—to a big 50%).  And I had just experienced a viral breakthrough.  Yes, breakthrough—even on a great Chinese herbal protocol.  Liver enzymes which, thanks to my herbal regime, had hovered just slightly above normal for all those years suddenly spiked to over 100 and stayed there.  In my case I think this had something to do with menopause, but who knows?  With the strong encouragement of my TCM practitioner, Misha Cohen, I undertook a second run of chemical therapy.  This time it worked.  I suffered much and fought like hell for my SVR, but I got it.  And yes, I also got a few things I didn’t anticipate, but I got my SVR and the first real peace of mind I’ve had since I was diagnosed fifteen years ago.  It’s even starting to occur to me that I might just enjoy a normal life span after all.

The advantages of TCM:  I never saw an increase in fibrosis over all those years, and well might have had it not been for herbal prophylaxis.   I started out, when first biopsied in 1989, with what used to be called “minor bridging fibrosis” and stayed there, somewhere between stages 2 and 3 until I commenced treatment in June 2004.   I am one of those people whose bodies went into overdrive in response to the virus, and there is no reason to believe that this autoimmune response would have abated on its own. Second advantage: I was able to handle the heavy fatigue and immune system vulnerability that came with HCV.  Without alternative medicine, my QOL would have been substandard.  No question in my mind about that.

The disadvantage:  TCM, like all alternative medicine modalities, is not covered by standard health insurance.  Even with reasonable rates, all my disposable income for all those years went to controlling my chronic viral disease.  This means no vacations, no frills.  But I remained fairly healthy.   And while on this subject, let me suggest that you find a NYC-based TCM practitioner with a protocol comparable to Zhang’s, but with far more affordable rates.  (See a PDF file on Misha Cohen’s website.)

Jim, second guessing yourself at this stage strikes me as unproductive and even hurtful. You’ve been through way too much to start beating your head against the wall.  How can that possibly support post-tx healing?   What is the use value?  You most likely made the right choice, and there are no good choices in this tragic little game.  Hep C is a mean and unpredictable little entity.  While I find a TCM approach to viral diseases useful and persuasive, it does not promise “cures.”   Achieving a maintaining a happy truce with the virus means constant, uninterrupted therapy, probably for the rest of your life.   I, for one, wanted time out, resolution, some kind of certainty.  Ah, silly me!  But addiction to certainty is a hard thing to break—no doubt about that.  

It occurs to me that the best thing all of us post-txer’s can do is to report post-tx problems to our docs, whether they want to hear them or not.  And insist—forcefully insist-- that this info find its way to medical colleagues, to a national data base, the FDA, the CDC, all of it. We need to ***** and moan about the lack of followup, and remind them just how egregious that is, just how contrary that is to the Hippocratic oath they all took.  

Maybe we need to join forces with various advocacy groups, or try to put the data informally deposited here to some good and larger use.  What do you all think?

[Kalio1]

I think that is a fantastic and productive idea.

[Califia]

That was "biatch" and moan, by the way.

[cuteus]

here is the link to a survey chevy found a while back, maybe you can start there. And by all means, if you feel strongly that tx caused your present problems, contact the Dept of Health, a letter would be my choice.

on the other hand, if you felt that no lingering things have come from tx, a letter stating so, might offer a view of both sides of the coin, hopefully they won't throw any of the letters away.

[cuteus]

as I hit the submit button, i noticed this was missing
http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp

[jmjm530]

Bob: "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"

Hi Bob,

Maybe you're talking about me in part. But if you remember, I went out of my way to state that 2 out of the 3 heaptologists I consulted suggested 48 weeks based on my RVR. In the end, I went with my treating hep, who added six weeks based on my age and histology (stage 3). Given my investment to that date, the extra six weeks seemed reasonable and far different from the 72-weeks or even 2 years some suggest.

As to "treatment might be more dangerous than hep C" -- I don't think anyone has made that statement without qualification. What is being said by some is that for those with little or no liver damage, the risks of treatment may outweigh the benefits and therefore a watch n' wait approach is reasonable, and something I personally would favor. In fact, I did watch n' wait for a number of years and only treated based on a stage 3 biopsy.

But for arguments sake, I still don't see a discrepency between recommending extended treatment for some and at the same time recommending others watch n' wait. Among other things, the first recommendation may be for those with significant liver damage and/or slower responders; and the second for someone with little or no liver damage. Different animals. IMO.

So how has post tx been for you? Any PCR's yet? Hope this finds you well.

-------------
Califia,

First, congratulations on what seems to me a definite SVR. It's been a long journey for you.

I also appreciate your concern about my "second-guessing" and can't disagree that it's "unproductive and hurtful". I was just being honest and I guess it's as stage I have to pass through -- I do not plan on dwelling there very long but maybe -- at least for me -- sometimes you have to look in the rear view mirror before you begin your move ahead.  

As to TCM, what have you heard of Zhang, except that he's apparently expensive? I sort of picked Zhang only because he seems to have some sort of track record with hep c. Last time I saw an herbalist/accupunturist it was only on the recommendation of a friend and I really didn't know what herbs he gave me. My liver enzmes rose and it was either his herbs or my hep c booster around the same time -- or a combination. So, I guess what I'm saying is I'm a bit leery of knocking on another herbalist's door so maybe a "name brand" Dr. of TCM might be better?

At this point, since it looks like I'm SVR, my purpose in TCM is not to clear the virus or even liver healthy specifically, but to help with my post treatment side effects -- specifically some cognitive issues but more troublesome some skin issues namely sebosporiasis and rosacea.

Stay well and thanks for responding.

-- Jim

[returntosender]

Jim - quoting Zhang: "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."  

What if the things happening to SVRs are not side effects.  What if the body has to ADJUST to NOT HAVING the HepC virus.  Reading your quote, the logic is that thirty years is a long time for the body to work out equilibrium with this virus.  What if it just takes a long time to readjust to not having it there?  Perhaps other critters jump in to their advantage and have to be accounted for?  Perhaps resources used in one area take time to get reallocated.

Moreover, the liver, now functioning at full force is starting to clean more, pump more hormones and do all of the 61 or so things that it should have been doing but was too tired to do or damaged to do because of the virus.  How does the body handle and assimilate all of these new processes?  Could it simply be that we have removed something from our body that our body dealt with for many years and without it is a little confused?  Is it too much to expect that it will take a few years to work out a thirty year habit?

Something else I noticed, IMHO it seems like I read about more SVRs with these post treatment "side effects" than relapsers?  Are they expecting more, noticing more or are they simply adjusting more?

So the new thing to worry about is if you are feeling TOO GOOD after treatment might mean that you wont get your SVR - uh oh think I felt a little twinge there.

[SnoWav]

Guess I will chime in for my 2 cents worth. 1a starting VL 1.5 million with mild fibrosos after 33 yrs. Not feeling good at all before TX nuropathy in left arm and lots of leg pain,couldent sleep much. Started TX and in a week most all those symtoms vanished.went the 48 weeks clear at 12 and clear right after TX.At 12 weeks post TX relapsed. Still feeling much better than before TX,VL load at 5 months post TX 1 million so sure Im glad I did TX my quality of life is better.I really don't care if I clear hep C or not as long as my time here on this 3 rock from the sun is QUALITY time.If I start feeling bad for awhile I might consider standard TX again but otherwise I will wait for a shorter kinder TX.

[MissMiss]

Another two cents worth here.

A broken leg isn't finished healing when the cast is taken off.  It takes therapy and time to finish the job.  Maybe it is the same with HCV and Peg TX.  I dunno, just a thought.

Having a survey about sx before and after tx would be very eye opening.  But, then the question has to be asked if the pre-tx sx's are possibly from the virus or something like Cryo that can be caused from having the virus.  And other actual processes that can be linked to having the virus.  

Age of infection could also be a factor, I think.  Pre-adult contraction maybe might be harder on our body than adult contraction since we're still growing and developing the body that is supposed to last us throughout our lives.  Kind of like only changing your cars oil every 10k miles and expecting it to last like you changed it every 3k miles.  It has to have an effect.

There is so much to learn about this virus and lots of other things.  I remember a member saying her mother had endometriosis years ago and was told it was all in her head.  Today that is a recognized medical condition.  I think it is irresponsible for any doctor to say there will be no lingering side effects from the tx when there are so many unanswered questions yet.  In ten years perhaps they will be able to quantify lingering sx and the true effect of this virus on people from folks like us who are blazing the trail.

Now I feel like a cowgirl herding the cattle through new country, blazing a trail!  I'm babbling now so I'll say G'day to you all for now.  

miss

[Califia]

What I've heard over the years is that Zhang is top notch. His patient following is loyal and noisily enthusiastic.  In fact, my own practitioner apprenticed with him decades ago.  Word on the TCM street is also that his herbal formulas are overpriced, but heck, he's got two college bound kids, or so the story goes. I would agree with you that turning to TCM for help with various post-tx autoimmune problems makes all the sense in the world, as does your penchant for good Japanese food.  You can find links to other practitioners at <ahref=http://www.docmisha.com> .

[Califia]

And the suspense builds.....http://www.docmisha.com     See her list of other practitioners trained in her protocol, which is not unlike Zhang's.

[Forseegood]

what an interesting thread, good arguments guys, at least I was in rapt attention...

[Snookmiester]

Anybody ever gone and read through this site? Not sure how to take some of the stories myself?

<a href="http://lloydwright.org/hepatitis_messages/Interferon_correspondence.htm">Interferon stories</a>

[Forseegood]

ha ha ha, wow, some of those stories!!! Do you have a pistol lying around? Cause I ain't got enough of my sleeping pills to do the job, ha ha! Man, that place a buzzkill or what??? They need a little bit of levity over there, we might send Goof and Can Man to go tag team them, geeeeesh!!!!

[GoofyDad]

and I'm in rapt confusion...

"I never saw an increase in fibrosis over all those years, and well might have had it not been for herbal prophylaxis."

I mean, how do you propose I keep the dang things on, that's what I want to know....and wouldn't they leave green smudges on the the thingie-ma-bobbie? Sure, fine for St Paddy's day, but you know, showering at the gym and all......

All kidding aside, thanks for the thread.....

[jmjm530]

Don't know what to make of those stories but just came back from a new derm who spent about an hour with me. It was obvious he never saw so much different stuff going on in the same person at the same time. Some suggest that most of these problems were pre-existing -- well, yes and no. True, I had pre-existing skin tendencies prior to treatment let's say a 1 or 2 on a scale of 1-10. Zero effect on QOL. Now, it's like 15 on that same scale and QOL is significantly effected. The fact that I had an underlying benign pre-existing skin issues prior does not make it any better for me. How many of us know exactly what is lurking just under the surface when we take interferon for long periods of time? Certainly one way to find out :)

-- Jim

[Snookmiester]

Up above in a previous post, a member here attempted to tell a funny, I assume. Because in it, she stated that why we aren't seeing any studies? I just have to laugh, as obviously AGAIN, somebody hasn't done research..That person forgets how all the interefron studies were brought about, and paid for.. The article I am about to link to, is a response to an article that was published on the front page on The New York Times, back on June 27, 2004.. This is how Dr's where rewarded for prescribing interferon for Scherring Plough, and how they were paid for conducting trials, etc.. Big, big scandal, in which Scherring Plough was fined over 345 million.. Boy, I guess we all forgot how honest the medical commuinty really is! Medicine is a business, nothing more!

<a href="http://www.newstarget.com/001298.html">Pharmacutical curroption</a>

[jmjm530]

Give the drug companies a break fella. How the h*ll are they going to find time to conduct studies in post-tx side effects when they're busy running getaway weekends for docs? But I will say this, the new breed of drug rep are so hot-hot-hot sometimes, that I don't think the average middle aged male doctor stands a chance. I mean I was drooling in the waiting room a few weeks ago while an rep for that new long-lasting epo drug was being ushered in. That meant I had to wait twenty minutes more. If my doc was younger, the wait would probably have been an hour :)

-- Jim

[beamishboy]

why are yu hanging out in the shower room on st. patty's day?? with a green one at that...it is a good post..thanks to all for info & imput..14 weeks to go before i can even think of complainin about 'lingering side effects' and thank yu goofydad for the levity-Can't get enuff of that!