Back again - sort of....

[Magnum]

Went through 5 months of triple therapy with Victrelis. After 5 months I went from 2.3 million to 300. However, that was at week 16 of Victrelis. The protocol was to be undetectable at week 12. So now I wait for the non-Interferon drugs.

I have to say the treatment was tolerable until the last 2 weeks. Then it hit the fan. About a month after quitting, something extraordinary happened. I lost 22 lbs in one month. Dr. Gish was concerned and said most was muscle mass due to the non-proliferation of protein enzymes by the liver. So three months now after quitting, I am still only only one pound heavier, while forcing myself to eat more. This is a concern to be sure. I feel nauseated at times and with a lack of energy. I lost 2/3 of my curly full head of hair, which is now straight. Lost all the hair on my legs.

I just hope the future Heppies appreciate the fact that us Guinea pigs are going through this to make it easier for them one day, when the cure will eventually be one pill daily for a month...

Magnum

[ceanothus]

Im so sorry to hear of your tx failure, but wanted to thank you for posting your update, and also for your extensive work as a guinea pig for future HCV tx. I'm also cirrhotic, also compensated, and am currently on triple tx with Incivek. Rough sides, but so far it seems to be working. I'm on week 25/48 and have been UND since week 8, though I still worry a lot about breakthrough and/or relapse, so I find it quite painful to envision what you are going through. I wish you all the best in getting your weight loss under control and getting onto a more successful tx in the near future.
-Saelon

[Magnum]

Dr. Gish is world renowned and is a specialist of only the liver. He is also chief of liver transplantation for the West Coast and a professor at the University at San Diego, CA. I've been seeing him for about 10 years when he comes to Las Vegas once a month. He has a license to practice in California and Nevada only.

He is on top of all the new research being done. I put a lot of faith on his prognosis. He checks you out physically at every visit as opposed to just asking questions. His expertise is unquestionable in my opinion.

I highly recommend you see him. You'll find him a very serious man with nothing on his mind except your well being when you have a visit with him. A no nonsense practitioner that doesn't let anything escape his realm of knowledge. Good luck and stay well...

Magnum

[orphanedhawk]

Did Gish tell you to stop drinking coffee ? There are lots of studies supporting coffee drinking as being beneficial to the liver and to put it simply, hep C doesn't like coffee.

When I was cirrhotic like you, I ate no red meat~ sticking to chicken and fish. One doctor told me to eat lots of tofu and egg whites to increase my albumin levels.

For pain, massage helps. Dr. Gish probably wouldn't go for using cannabis but maybe if you used the brownies? I found they took that deep muscle pain away better than anything else.

Wishing you the best~

[BoceprevirGal]

That's good news, about your platelets rising, but concerning, about your enzymes elevating.
   I had read that peanut-oil is good for raising platelets, so I buy that peanut-butter with the oil on the top, and heat up a fresh tortilla, on the burner, and put a big, oily hunk of P.B. in the middle, it's not that bad, once it's heated.
   Would you consider participating in a research study, that is using the new, second generation PI's, or that other one, Alosprivir? (or something, it's not a PI, but an anti-viral)
   Some of the newer studies just have letters and numbers, instead of a name, for the new chemicals. I was discluded from these studies for my AST/ALT being too high, at the time (400/500) and having elevated Bilirubin, but I had heard they passed a law, this January, making it harder for the research programs to disclude, by the labs~  I can research this for you, if you are interested in new studies, just let me know, Magnum~
   Like you said, it's good to keep standing, keep  performing, keep fighting, and keep up the support system

[frijole]

Unbelievable - this 22# loss after the end of treatment.  But I do think the side effects of Victrelis are nothing to scoff about and perhaps this is a ramification of it.  

"Dr. Gish was concerned and said most was muscle mass due to the non-proliferation of protein enzymes by the liver"

Does this mean the liver is preventing the develpment of muscle mass? I tried some googling and so far have only come up with age-related muscle mass.  The solution seems to be protein plus excercise.  Mag, I know you swam a mile a day for a good part of your treatment so I know your muscle mass was good.  Have you been able to get back to that?  When did you stop excercising?  And why would the muscle decrease happen after tx?  This is so odd to me.

I personally can feel an enormous decrease in muscle mass.  My excercise ended early in treatment this time and other than weekly Tai Chi (which totally wipes me out) I do nothing.  I still have 14 weeks of Vic to go and wonder how that much more inactivity is going to impact me.  Yet I find myself unable to get up and walk like I should.

You fought so hard to get on the PIs before they hit the market and still had to wait until they did.  What is the answer?  I am glad to hear you are preforming again.

bean  

[libzo2]

Mind over matter. . .  Magnum you are a force of nature.  I am really stumped for you inspite of your valiance.  Damn.  You fought so very hard.  This is a hell of a set back.  First time I did SOC, I was overdosing on Riba and lost 30 lbs.  I felt very anorexic.  This was a very difficult task to replenish the padding our bodies need for mere sitting and functioning.  I do hope you can regain your strength soon.  Your attitude is amazing and you inspire me.  My heart goes out to you and your family.