Long term side effects

I completed interferon/rebatol treatment Dec 15, 2003.  I am still suffering from chronic muscle and joint pain, and chronic fatigue.  The good news - I have a 0 viral load 10 months after completing treatment.  The bad news, I still feel almost as bad as I did when on the treatment.  I would like to know if there are others out there who have experienced long term side effects like I am.  thanks.

[Pixie81862]

I completed treatment Dec 29, 2002 and had a problem with fatigue.  I just joined Curves 3 weeks ago and have found that exercising has helped the fatigue.  I also have to remember to pull in 80-100 oz of fluids a day.  On days that I don't, the fatigue is worse.

The only other side effect that I have is ezcema (eczema).

[TravisB]

When you read this and other forums a lot of people recover from TX within a few months but others take much longer.  I took about 7 months to fully recover.  Everyone has a different metabolism and each person's body purges these toxic drugs at a different rate. In all probability you are just taking a lot longer than the average to recover.  Be patient.  It will happen.  Travis

[jonihs]

I wonder if people w/ liver damage recover post tx. slower than others. I know we recover slower w/ everything else (from bruising to infections). Just a thought. Joni

[mofo]

Unfortunately some folks don't recover.  Maybe "don't" is to strong a word, since we've only been evaluating this for a short while, but some are finding out that the way they feel "post-treatment" isn't the same as "pre-treatment", it's worse.

[doll face]

Hate to cut in here but is anyone else having problems with thier bones especially from my forearms to my fingertips. It aches so much inside the bones, I have tried everything I can think of. There are times I cant even get my fingers to work. It seems to be lasting longer and longer.

[terriri]

Hi sunny, Have you been tested for arthritis lately?  I was actually diagnosed before treatment but didn

[TravisB]

From what I've read and heard, the only people that don't completely recover from TX are those that suffered permanent damage like blown thyroids, diabetes etc tha is measurable on blood tests.  For those that don't show any permanent damage in their blood tests the recovery is almost always complete.  It just can take a lot longer for some than others.

[AnnieG]

I had the same problem after 4 months in to tx.  It hurt so bad in my hands that I could not write, drive, or comb my hair.  I ended up having a whole bunch of test.  The final diagnosis was that the interferon had caused an auto-immune connective tissue disorder and also had rearranged the molecular structure in all my muscles.  It felt like it was in my bones, but it was actually all my major tendons (which connect the bones).  I don't want to scare anyone, but this can and does happen from treatment.  If anyone wants to know more about this, please contact me: ***@****

[pittrice]

I went through 6 months combo treatment of Rebatol and Interferon in 2003. It took me three years to recover from the treatment. I had everything from severe muscle pain, joint pain, pain in my feet, hair loss, insomnia, muscle tone loss, severe back pain, depression, and stomach lining erosion. It is very hard to get a doctor who is a hepatologist to even help you out with the symptoms because many are not listed on the medication's list of side effects. I was a wreck and it was only by having a good personal doctor and excellent osteopath that I have finally recovered from the treatment. I was in my 30's and in reasonably good shape and in good health before I started it. After the medication I developed a fatty liver as well. These drugs are incredibly toxic and can affect some people terribly. while I was on the treatment I thought about committing suicide every day. I didnt tell anyone this because I was afraid of not finishing the medication. I feel very lucky that I actually survived the treatment. I also became very aggressive while on it and I think it was because I was in so much pain all the time. Although I walked a lot I couldn't exercise because of the pain but I would have benefited from yoga or continuous physical therapy. Doctors need to pay much more attention to their patients who are having problems in these meds because I think that a lot of the side effects can be managed but they need a lot of care and attention. The treatment did work in the end and I am now four years with no detectable amount of the virus. My husband did the same treatment (it was he who contracted it at the age of 21 from blood transfusions after a severe accident and before the blood pool was screened for it and I contracted it somehow from him years later) though and he managed to work full time and though he had bad symptoms during the weekends when he took the interferon shot, he was fairly ok during the week and he came out of the treatment in pretty fine shape.
Anyone who is on it needs to make sure you have a doctor who will listen to you and do all they can to help you. This is serious medicine with serious side effects.

[nygirl7]

I have a blown thyroid from my 72 weeks of treatment.  It took about a year to get close to "normal" whatever that is if it will ever happen again.

I do know that when I force myself to be active I feel much better.  The fatigue seems to get me when I lay around and "rest" so I make myself get up and do something.


Of course I'm still waiting for all my hair to grow back - the thyroid is a bust but at least I can say I am SVR.

Good luck.  Have you seen any specialists to try and find if there anything you can do to help?