Post treatment Neurological side effects of Peg-Intron

[Tropic53]

PLEASE HELP!!

Has anyone else experienced post treatment neurological side effects that have NOT GONE AWAY since 2003. I still have the brain fog I had during the Peg-Intron treatment. A neurologist is telling me that the treatment is NOT chemotherapy and could not have caused my symptoms. I have short term memory loss, diminished motor skills and balance problems. I also have insomnia that has worsened after treatment. I forget words and I cannot spell very well anymore. My writing has become so bad, that I can hardly write my own name some days. My handwriting is messy and barely readable.

I also have mental confusion, mild edema and many other symptoms. I had an MRI which was normal. Is there any other type of neurological testing that can be done?
I have also been diagnosed with ADD and PTSD also. No one seems to take my symptoms seriously! The doctor's think my symptoms are all mental and are not related to the Peg-Intron treatment. I disagree!!  

Please comment! I am so upset at the doctors and other professionals I have been dealing with. Apparently they don't have a clue what Peg-Intron really can do a person. I suppose the doctors just know what the drug companies tell them.

Could this be considered "Chemo brain" and is there any treatment to help with these symptoms?

Thanks

[speed502]

I share many of the same Sx as you since Tx in 2000. It was pre-peg back then , Intron A/Riba combo. Not much was known back then I guess. I didn't ever hear of terms such as Interferon fog/hangover but knew something wasn't right. I learned more about it when I found archived posts from Jim (jmjm530) and Frank Perotta around Aug 2007 I think it was. I made some bad decisions during and after Tx and had lots of trouble thinking things out. Even physically I never really felt good again. For me it's sort of like having the flu 24/7. Sometimes much worse. My Doc thought it was mental also and usually Rx'd AD's but that never helped much. That said, after reading some of Frank's posts I feel very fortunate and I wish him all the best. To Jim, I appreciate all the good info you have posted. I don't post often but have been following this forum for years. And to Tropic, all the best to you too. I hope you can find some answers and get to feeling better.

[medicmommy]

Its been my experience that those of the medical profession who aren't directly involved with Hep C treatment -are clueless. I don't care how many degrees are after their names. Interferon of any kind IS chemotherapy. there are different kinds. The kind for cancer is huge doses for a very brief period of time (no more than 6 weeks). As a rule, cancer cells grow fast and hot, and is destroyed easier than Hep C because it is usually concentrated in one area. Hep C is spread throughout the body in all tissues. Even though is visible damage is to your liver, it affects other systems as well...for example, before I had treatment, I had issues with my metabolism, female hormones, and blood sugar. I had worsening short-term memory loss, and had rare episodes of disorientation. I am now SVR (7 months post tx) and back to normal -without lasting effects (I hope!). If you haven't, have you folate (folic acid) levels checked. Oddly, when mine is low, I begin to get moody, achy, fatigue, and odd "liver" pangs...I was told that the treatment, or a malabsorption condition that was pre-existing, can cause folic acid and vitamin Bs to be poorly absorbed and can cause all kinds of weird memory, fatigue, and muscle pain issues...I hope this helps...((((HUGZ)))))~Melinda

[jmjm530]

You will find the story of some other post treatment sufferers here in our Health Page section:

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=65

Frank Perotta's post is one that comes to mind as a case similar to yours.

To the best of my knowledge very little research is being done in this field and it's not surprising that your doctors think it's all in your head as they really don't havre a clue what interferon does to the body other than kill the virus.

I assume you've been perscribed various ADs or similar under the suprevision of a psychiatrist. If not, you should pursue that. Some here have had success with nutritional/supplement intervention and/or exercise.

Unfortunately no way to turn back the clock but hopefully some kind of intervention will help.

-- Jim