what about peginferon?

[kiowa806]

I tried the peginferon treatment and was not able to complete the year long treatment due to severe MRSA infections.I was a responder to the treatment but have not been the same since the treatment process.Is there anyone else who has not onlyhad bad reactions to this treatment but seemed to develope moderate to severe neuropathy,osteoathritis,and complete change of physical wellness?I feel that this treatment has made me physically and mentally worse than i was before the treatment.I know we can easily blame the progression of the disease but what about the treatment creating side affects worse than the hepatitis C. Is there anyone out there who feels the way i do?

[alagirl]

I have ra that is fairly severe from tx.  I'm trying to get in to see a rheumatologist in hopes of getting on methotrexate or some similar med so that I don't have to rely so much on narcotic medication to manage it.

[Odin999]

You certainly aren't alone!

ToX can hurt you, but then so can HCV. A lot of betrayal and dissapointment comes from poor management of expectations.

I will never be the same again after this treatment. I mourn the loss of some parts of myself but not all the changes are entirely bad. I am more compassionate now.

[kiowa806]

thanks for the answer. i am not alone.how funny that sounds to say.i just needed the reassurance that this has to have had the same affect on others. you just can not beleive it until you hear it. thanks again

[Odin999]

The short answer is yes, lots of people report exactly those problems, and more. Eyesight, depression are a couple that spring to mind instantly.

There are no good scientific studies to refer to on the subject, which makes me angry. From what people report on forums and blogs, you are more likely to develop problems if there are pre-existing risk factors such as poor initial health, genetic predispositions to illness (particularly autoimmune diseases). I agree that for some people getting rid of the virus with ToX really is the better option, perhaps the only option. But I think an awful lot more needs to be done to help people make a genuinely educated risk-versus-reward decision.

I really haven't been off it for long enough yet to say whether I am going to be one of the more fortunate people who recovers well. My intuition is that some damage is going to be permanent, just don't know how much. I was only on treatment for 14-weeks. I have been putting a lot of thought and effort into recovery since then. For example, sought advice from a sports nutritionist to balance my metabolism, have been building up exercise carefully, sleeping well, eating well. It has all helped. My pre-ToX health was pretty good too. For those reasons I am more optimistic about a reasonable degree of recovery.  

My mental and physical health have gradually improved since I stopped a few months ago, but even as late as last week I still felt like my whole life was wrecked. I went between feeling like I would never recover to having faint glimmers of hope.

Last week I started experimenting with supplementing my diet with a very small amount of the amino acid Tyrosine (3-9g per day varied depending on my level of physical exertion). It feels like it has done wonders, but I could be just kidding myself. I am a lot less depressed, and I am not completely crashing for several days after exercise any more.

Not promoting Tyrosine as an sx cure all, or giving you medical advice here. Just relating a personal experience and approach. Maybe it has just worked well in my particular case because I am a bit of a sports nut and the treatment absolutely trashed my brain chemistry. I decided to try it after finding information related to alleviating the sun-sensitivity problem I now have from the IFN. That particular amino acid is connected to many common sx and to all the remaining sx that have been bothering me. The nutritionist thought it was worth a try. Time will tell I suppose.

Don't know how long you were on ToX, how long ago you stopped, or details of your pre-tx health. I hope you are well enough at the moment that you don't need to try again... There is a researcher in Australia who is starting a study on sx persistence but it may be too small to gain much credibility.

So, yes I feel like you do, but I am a bit more hopeful today...