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

-- Jim
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Avatar universal
I am 4 years post treatment and still suffering depression, anxiety, sleeplessness, brain fog , poor concentration.
I fear I am about to lose yet another job!
Any advice on how to treat these symptoms? I have been on every antidepressant known to medicine, I had a brief but welcome..respite with Zoloft.
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Avatar universal
Monotherapy would be great, but so far there is none that comes close that I have heard of.

It could be that some of the monotherapy people are hearing about is the very initial test for limited number of days and an attempt to evaluate response and safety.  

Willy
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1491755 tn?1333201362
What  monotherapy is coming out ?
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Avatar universal
Your post dovetails with my query about treatment options, particularly if treatment ASAP is not imperative because liver disease has not advanced too far.

I have the strong impression that, all other things equal, 24 weeks of SOC (in triple therapy) is MUCH better than 48 weeks and lower does of INF and ribaviron are MUCH preferred to higher doses.

I see this trend to monotherapy or at least shorter and less doses of SOC coming (though when is a big question mark).  It's appealing to say "Get a good doctor and let him/her sort through this" but does that really happen?  Is there a doctor who is REALLY on top of all the trials and treatment options and genetic indicators and other factors that predict or influence treatment outcomes and who will customize this for a particular situation?  If so, who would that be in the SF Bay Area or Peninsula?

BTB  
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Avatar universal
I am happy to find this thread.  What I say below is truth.

I took interferon and ribavirin for six months from june 08 to dec 08.  I was advised of feeling flu-like symptoms.  I have had Hep C a long time.  I was feeling fine before starting treatment.  My doctor sort of pushed me into the treatment.  I was not wild about doing it.

So the treatment itself was very difficult.  Could not work.  Fuzzy vision.  Mental confusion.  Irritability.  Fatigue.  

During treatment, I developed psoriasis on me left elbow.  I did not know that's what it was.  I did not know what psoriasis was.  I knew that the warnings said "Tell you doctor if you are having skin conditions."  I did.  he shrugged and said "It'll go away."  I have since discovered on Medline that the appearance or worsening of psoriasis is for most clinicians cause to discontinue treatment.  

After treatment, psoriasis kept spreading.  in March, 09, my toes were hugely swollen and my feet were sore.

I had the most bizarre side-effect, too, in that spicy foods became intolerable in Feb - Mar 09.  that faded away.    

Long story short, I now have psoriasis on my penis, my scrotum, my legs, my arms, my back, my fingernails, my toenails.

I have psoriatic arthritis in my left ring and middle finger, my left wrist, my right wrist, my left ankle, my right knee, both hips, all my toes, going into my spine if I eat poorly.  

My thyroid went whacky, too, and it did not recover.  

I was handsome and strong before the treatment.  The interferon took much of my life away.  

I started treatment for psoriasis with "biologics" in May 09.   The "biologics" lessen your immune system. Bad side effects for liver - my liver enzymes went way up.  I have had to stop them.  Actually, they seem like interferon in reverse.  Very dangerous in their own right.

I now follow a fairly strict diet from necessity.  If I eat cheese, wheat, sugar, too much coffee, etc, i become crippled from joint pain.  My life has become dominated by fighting the side effects of interferon.  Sun lamps all the time in an effort to lessen my psoriasis.  Trying not to despair.  

It is my impression that interferon just amps up your immune system without much control.  It's like riding one of those bumper cars where the steering only kind of works.   You never know exactly what it will hit.  

It is very, very dangerous stuff.  Most doctors who prescribe it have no idea how dangerous it is, IMO.  I know mine didn't.  I believe that Roche minimizes the potential side effects.  

I am fairly certain that if the doctors had told me beforehand that I risked being crippled by joint pain and swollen stiff joints, I never would have undergone the treatment.  
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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.
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Avatar universal
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
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107513 tn?1232286464
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>
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Avatar universal
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
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92903 tn?1309904711
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.....
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86075 tn?1238115091
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!!!!
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107513 tn?1232286464
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>
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86075 tn?1238115091
what an interesting thread, good arguments guys, at least I was in rapt attention...
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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.

Bob
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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.

Bob
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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.
bobby
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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
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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
gracias...
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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.

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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
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Avatar universal
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!
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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


Lynn
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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

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

Bob
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