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173930 tn?1196341998

For those post tx-Post Interferon / Ribavirin Treatment Symptoms Survey

found an interesting survey for those post tx,thought i would share it

All those post tx are welcome to share their thoughts and experiences on the same

Heres the link below
96 Responses
Avatar universal
Hey, Grim to say the least. Let's hope, that the tendency of folks that have a negitive experience with something are the ones most likely to respond to a survey such as this, holds true here. The number of problems and the %s affected by them on this survey are hard to believe. Seems like if the were accurate Drs would refuse to do it and the FDA would pull the treatment. jm
Avatar universal
Survey seems consistent with what I've seen posted here. Most telling to me is that 40% reported feeling worse after treating than before: 29% reported feeling about the same; and 31% reported feeling better after treatment.

What that means is that around 2 out of 3 people felt either worse or no different after treating. This should be a reality check for those who treat primarily because of the so-called extra-hepatatic symptons, i.e. to feel better. This study and anecdotal reports here suggest you will not feel better after treatment.

There are reasons to treat, but where I come down is that the primary reason is to regress or stop liver damage with the trade off that you probably will feel no better after treatment, possibly even worse. With newer treatments around the corner, this should be of interest to anyone with little or no liver damage. What these anecdotal studies say to me is to wait, not treat with current drugs.

-- Jim
131817 tn?1209532911
Wow,  I haven't looked at this site yet,  but from what you guys are saying, or at least Jim, is that 2 out of 3 feel worse or no different after tx. That sure holds true for me. I know I felt worse after tx than during. Perhaps I am a "rare" case,  but from those who have relapsed  or SVRed, I haven't read many great stories of the aftermath. I just posted about this on the other side.  While I had a few sx before tx, I am not sure it was worth my while to now have an autoimmune disease and be taking blood thinners the rest of my life. I still have no energy after 6 mos. post and I relapsed. Doesn't sit well with me as I consider re-treating in the future, that is for sure.
Avatar universal
Hey, I've been looking at this thing. If you compare the 1yr+ with the pretx groups you find a very modest improvement across the board. As you might remember I am stage 3 (bx jan.07) and am loathe to treat. Infected 37 years and I feel really very good. Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many? It very well be that those with problems have more room for improvment. jerry
Avatar universal
Jerry: Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many?
Yes. If you're lucky you come out feeling the same. If not, you come out worse. Here is our own little 'survey' consisting of posts describing side effects, many post treatment. And yes, there was a modest improvement 1 year post, which is encouraging. Hopefully those of us who experience post treatment symptons from the interferon will start to feel better gradually. Still a huge chunk out of ones life.

Our 'survey':

http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
Avatar universal
Sorry, my answer above should have been "No" for the reason given. If you start out feeling good, you pretty much have only one way to go which is to end up feeling worse. If you're lucky, maybe you'll end up the same.
148588 tn?1465782409
The results are believable and seem to fit what I've observed. I do tend to be suspicious of surveys where everything comes out even and adds up to a neat 100% - someone always breaks their #2 pencil, has an answer that doesn't fit neatly into the format, or doesn't understand the question/fills out the questionaire incorrectly ;-)
The good news in my case is, that after several years, a lot of the post-tx sx have faded. Of course this wouldn't apply to someone who has permanently damaged their thyroid, but I think it does give more hope than the results of a, basically short term post-tx survey might imply. People are always disappointed when 'modern medicine' doesn't wave its magic wand and make it all better instantly. I'm willing to live with slight hypertension and a little insomnia (that I can't prove are tx-related anyway) and have a lower risk of HCC and cirrhosis in the coming years.
173930 tn?1196341998
The results of a survey would be much more reliable  if the total number of people being surveyed are in thousands and not in hundreds...essentially the range should be much larger and chosen randomly
In this survey the total number is only 500 people and I think this number is not big enough to come to any conclusion
Avatar universal
well i have to be honest I definitely don't feel better or even as good as I did pre-tx but...I do understand that I put poison into my body for 72 weeks.  I didn't do it for "fun" I did it because it was necessary to try to save my life.

So I guess if I "saved my life" but feel worse - it's ok. I try to think of it that way.
Avatar universal
All these people surveyed have better than average: SVR rate, G1 ratio, length of Tx (40% did < 48 weeks). That means that for us here, especially the extenders, the odds for no long-term SX and better quality of life are even grimmer. Probably, 5 or 10 years from now, it'll be accepted truth that extending Tx guaranties irreversible damages.

Also, another myth dispelled here: the fading away SX. For example, skin problems - 39% first 6 months, 28% first 1 year, and STILL 28% after that. So basically, if you have it, it's yours forever.

I agree with Jim that you shouldn't treat just to "feel better". But now I start to think that you also shouldn't treat just to "regress liver damage", if you're going to feel much worse for the rest of your life. Especially when one of the possible long-term SX of Tx may be much faster progress of liver damage, instead of the expected regress.

On a Quality of Life scale of 0-10 (where 10 is living normal life without health problems and 0 is constant pain and anguish), my life pre-Tx was probably 7 and now is 2 on good days. Actually, the argument that being dead is a better option than living in a torture chamber starts to make a lot of sense in the nasty post-Tx landscape.
Avatar universal
It personally disconcerting that so many people start their treatment journey here with a post that says something like "I've been feeling so bad/tired/(fill in the blank) lately that I knew it was time to treat.

What they are doing, of course, is making the connection between the symptons they feel and their Hep C. Whether there is a cause and effect (maybe, maybe not) is one thing, but the problem is that so many seem to think that treating will take care of these symptons. This study and other show that statistically the opposite may happen.

I'm certainly not against treatment -- I treated myself -- but I think it's important that people make the decision with realistic expectations.

-- Jim
Avatar universal
Because of autoimmune skin disease, I treated for only 13 miserable weeks - but am probably going to be SVR (still UND at 4 months post tx), which I guess is great.  

So far I've suffered no further exacerbations of the skin problems, which were becoming permanent disfigurations while treating.  But I have to say I feel no better than I did before treating, still unable to make it through an 8 to 10 hour work day without a good hour's nap.  

I have one very interesting project coming up, fortunately for a producer who always uses me to edit her documentaries, that has no definite air date (it's for PBS, and they're pretty flexible), so I suspect that may be my swan song as a film editor.  Then I think I'm going to have to look into semi-retirement or a new career.  In another two years or so I'll be eligible for social security, which combined with some part-time gigs might support me - unfortunately NOT in the south of France or Tuscany as I'd always hoped.

I had always figured I'd never retire, simply reduce the number of weeks I worked.  To not be able to do so is quite depressing.  Maybe I'll feel better by this time next year.  Sure hope so, and hope all of you do too.  

Looking back, I still think I did the right thing in treating, since I was already feeling pretty low beforehand.  But if I were a person in my shape (geno 2, grade 2, stage 2) and feeling terrific, I'd wait for the new meds before undergoing treatment.
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