Three relapses, what now?

[yauser]

I am contaminated with the Hep C Virus Genotyp 1 since about 35 years. For more than 20 years I did not know that. Since 2006 I tried three Interferon/Ribavirin therapies. 24, 48 and 72 weeks. With no result, still relapsing. The first two therapies passed with no further complications. Business as usual regarding side affects. But the last therapy ended up in a mess. Around week 55 all my muscles started to contract heavily and left me with permanent pain until week 67 when I had to quit the treatment for that reason. Docs said it was developing an inflammation of my peripheral nerves and it hits me more or less until today. It wasn't getting much better last months. Additionally my left eye got a very dark shadow last months. It is still notable even if I had a surgical exchange of the natural lens for a high end artificial lens. After all that the HepC virus is still measurable. Does anyone have a good proposal what should be my master plan for the next treatment years? I really want to get rid of this damned virus finally.

[yauser]

My excuses for late answering also to you. It actually helped me a lot to have kind of hope for further treatment without any interferon/ribavirin stuff. I really don#t want to touch this **** anymore. As you said I don#t want to go through six treatments. I guess I could do a 120 weeks or more and the virus just sits there somewhere in an unknown corner waiting for the end of treatment just to show up again. As said I was very lucky until now keeping my health in very good shape. I guess I can wait for something more individual that will really kill this damned virus for ever. But I must admit it should be pretty soon. Not because my liver is fading away or something else that would really attack. It really is the psychological factor. Everybody sees a strong and up to date man and questions what is wrong with this guy. And for myself it is the same impression. The timeless 'entrepreneur' of life and prof never sleeps. But the next annoying cycle of immune system's necessary work to keep control of the scenario will appear for sure and gives you brake again right at the very moment you don't want to accept it. No way to end up like this.  

[yauser]

My excuses for the late answer also you. I have explained the reason in my post to spectda. I really enjoy you confirmed that the new drugs would work. The 24 weeks I would start immediately again if my doctors would tell me that this is for sure the last treatment. But one thing must be observed pretty well. No overdose again of side effects of interferon/ribavirin regarding the nervous factor. It would probably kill me this time. Everything else I can handle for sure. I want to get rid of this annoying Hepatitis C. Until now it wasn't a real desease. But it ***** more and more because the cycles of being extremely tired, psychologically affected and all together feeling slow and with obsolete pain become faster and more conscious all the time.

[yauser]

Please excuse my late answer for your valuable advise. During the last weeks I had to redesign a lot of things according to the new situation regarding the last relaps. All my plans, private and prof, became obsolete for the nearest future. The most important thing is right now the secured knowledge of NO desease progression at all. I have had biopsy, liver scans and almost every analyze you can get within the last five years of treatment. It seems my only problem is that I could not eliminate the virus. Right now I feel the regular reaction of the remote and regular work of the immune system. It is the additional stage of the entire nervous system that seems pretty well destroyed of the long termed  interferon/ribavirin treatment. After a couple of more verifications it is almost for sure that the eye issue is also directly impacted from the nerves that transport visual signals. So my biggest problem right now is that this will probably remain as long as the virus remains. So I have to arrange my activities regarding this obstacle pretty well, even if I am proceeding quite well with physical wellness programs. My doctors are all saying that we must wait for the new direct anti viral medication. All the therapies I made had the same progression. No virus could be approved anymore after 10-12 weeks, also never again during the therapy itself. After the therapy it took almost the same time of about six weeks to relaps adn there it always stays within 90k to 120k IE/ml of virus values. Never more, never less.

[Trish77]

Hopefully this gives you a bit of hope.

http://www.medhelp.org/posts/Hepatitis-C/Three-years-post-tx/show/1506323

While I'm sure you don't want to go through six treatments, the encouraging part is that the treatment that made the difference for Andiamo was the Telaprevir.  Both this and Boceprevir are a hair away from FDA approval in the U.S. and it will likely spread throughout the world and I can imagine it will spread to Germany and to Munich as well.  There are also drugs in the pipeline that don't include Interferon at all.  

If you do some research through the threads here, there are a number of folks who are managing their fibrosis with the help of supplements while they wait for treatments that are more appropriate to their own unique past responses to treatment and their own health conditions.

Keep your chin up….and good luck to you.

Trish

[copyman]

agree, you need the new drugs to finally get rid of the disease. you may be able to do just 24 weeks with one of the new drugs added.

Keep in mind you still need to do the ribavirin & Interferon and add the new drug.

These new drugs work and very good chance of you being cured!

best of luck

[spectda]

It really sounds like you need to wait for better therapy if your health can afford it. Your eye and muscle issues may very well  prohibit you from further interferon therapy. what has your doctor suggested?

Have you had a biopsy, and if so what is your stage of disease progression. what week during each treatment did you become undetectable during your previous attempts, and how soon after did you relapse?

There are many new drugs in development currently and interferon free treatment is being pursued aggressively, perhaps you are able to wait until they are available.

If you are not able to wait, two new direct anti viral medications (telaprevir and boceprevir) should be approved within the next month or so (at least in the US). They are effective for relapsers, have much higher success rates then interferon/ribavirin only, but will still include interferon and ribavirin as part of the treatment. Of course you would need to speak to a qualified liver/hcv specialist about your condition to see if they would recommend them.

Welcome to the forum,
Dave