coming off interferon HOW BAD IS IT!

[cottoncandy99]

I have only 5 shots left and was told to expect the same as when I went on the medicines as if some could give me some insight as this really scares me now that the end is near.  If I would have known all this I probably wouldn't have even started the treatment as they are saying if I don't respond then there is nothing else left so does that mean that I AM GOING TO DIE!  I have never drank any beer or nothing that would hurt my liver but liver transplants are hard to come by.  I have looked up with Schering and there is no documutation of what it is like coming off this stuff. I have fears and feel like maybe someone has been down this road that could be of help!.....

[sldb]

First 2 to 3 mths off treatment i felt horrible due to joint pain which had gone away while on tx.  iam 1yr svr and all those symptoms have slowly subsided. joint pain is gone and the painful nodules on my finger joints have dissappeared.  hang in there and be positive, good luck.

[GrandmaA]

One of the posters on this forum told me when I was beginning my treatment not to project into the future. To just take it day by day and that seems to be the easiest and best way to approach this treatment and afterwards. When we start projecting out into the future about all the "what ifs" it can really sap our energy and our imagination can run away with negatives that may never happen. Another poster said that feeling good again just creeps up on you. One Best wishes to you.

[roostermom]

I felt better almost imediately upon stopping tx, which had clear the virus in a 48 wk treatment. It came back at the 2 or 3m month mark however. I don't feel any worse than I did before treatment, and maybe felt better for a while due to the rest for viral attack my liver had during the year on treatment. I wouldn't expect bad things coming off the tx - you are bound to feel a whole lot better!

[mremeet]

In the short term, chances are overwhelmingly in favor of you feeling better once you wrap up treatment and stop taking those drugs. I started feeling much better within days and weeks after stopping ribavirin and IFN, NO question about that. In the longer term once the drugs fully wear off and you're as recovered as you're going to get, you may or may not feel better compared to what you felt like prior to treatment. That seems to be highly individualized mostly based on whether you SVR or not (of course), your age, your length of treatment, and whether or not you were HCV symptomatic prior to treatment (although most people have no side effects from HCV). Speaking for myself I feel much better after ending treatment and achieving SVR. There's still some residual effects from the treatment drugs (now 6 months post treatment), but I'm fairly confident they will fade to near nothing in the fairly near future. Getting cured has made me feel a whole lot better both physically and mentally. So if you're wondering if that ever happens and if it is even possible, believe me it is. Best of luck for your remaining tx cruise, may it have a happy ending (and a soft landing!).

[cruelworld]

you must have had some bad experiences to have forgotten what it was like to go off  interferon for the first two times you tried it. severe amnesia maybe?
ive never heard of that as a side effect but i guess it is possible.
i dont see how i could ever forget any of my experiences with these drugs.

in any case, i wish you the best.

[GrandmaA]

Everyone is different. I finished tx 13 weeks ago and I feel better every week, and almost normal now. Short term memory is not the best but I'm 65 years old. Geno 1a, first time treating. I treated for 51 weeks. I think the brain fog is gone for a couple weeks now and I'm sleeping better.

[jmjm530]

Have you had a liver biopsy recently? If not, maybe you should have one as your liver may have healed some from the treatments. Also, what do you mean that when you are off that "the Hep-C came back worst than before"? Are you talking about viral load or symptons? You should know that viral load really doesn't matter much. Lastly, are you seeing a liver specialist (hepatologist) or a gastro? Especially since you've failed tx before, a hepatologist would be the best person to guide you moving on.

-- Jim

[cottoncandy99]

But this is my 3rd time around and everytime I was off the Hep-C came back worst than before it just seems to increase no matter what.  I have stay very strick to the diet and now it has come down to no pork or beef at all in my foods.  I eat just strickly fish, chicken, chicken always that I have found to make it and turkey breast only.  I eat a lot of fruits and vegtables as they have always been my favorite.  I went away from all white breads to wheat as well with my pasta's.  I am afraid that something new will not come out in time and then its to late for me to change anything that I have done to try to save myself.  All these new things there is no promises with them either.
I just want to be able to drive again and to not have that fear that I will take a seizure as that is one of my other problems and this medicine doesn't help.
LOVE TO BE FREE!

[dperry10]

I have been off tx almost 5 weeks. feel abit better more and more each day from the feeling during tx.   HGB coming back up feels good .. not bad.   I am having some other issues, but still trying to sort all that out now.     Hang in there.  it will be easier than what you have been going thru I am sure.

[jmjm530]

Very hard to say, but from what I've seen here, some feel better than they did before treating, some feel worse, most feel about the same. No doubt you will feel a lot better than you do now while on the treatment drugs.

But regardless of how you feel, if you do SVR (get cured) your liver will probably heal and your chances of liver cancer will be reduced. If for some reason you are not cured, there are new drugs in the pipeline that might have a better chance of curing you in the future. In any event, I'd try and stay optimistic.

-- Jim

[wyntre9]

I've still got another 19 weeks so I can't answer your question directly but I have read a lot of post from other heppers over the past year and most seem to adjust fairly quickly, within a month to a couple of months.

What are your stats?

wyntre