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29837 tn?1414534648

Back again - sort of....

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
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Avatar universal
Well, sorry to hear about outcome of this last go-around.

I'm glad that it was a shorter treatment and that you came close to making undetectable.  There are several great new treatments coming and I believe that things will continue to shorter, easier and more effective.  
.....I know, the broken record.  
EASL is only about a week away and you will see proof of what some of these treatments will hold.

Very sorry that you didn't make it.  Still sounds as though it was easier than the infergen, am I remembering correctly?  Next stop may be no interferon.

Wishing you a speedy recovery.

best,
willy
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1652596 tn?1342011626
so sorry to hear your news.  i wish you had better results.  i hope everything works out for you.  sending you prayers and hugs.  you deserve it.  belle
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29837 tn?1414534648
Thanks to everyone for your concern. Dr. Gish classified me as having compensated Cirrhosis at MELD 6, therefore I’m not a candidate for a transplant. I went from a naked weight of 192 at 6'0" before treatment to now 170 in about 6 weeks. I look like a refugee. I did a performance tonight (entertained and sang for 2 hrs.), and it went well. I’m mystified at this weight loss which didn’t happen until about a month after I stopped treatment.

Dr. Gish said liver functions are normal, but did not give me a definitive answer as to the weight loss, but rather, a guess. I have been through 4 prior treatment failures and never lost weight. I have to say that in my own opinion, Victrelis may be responsible.

Insomnia is still present. I’ve had much more pain in my lower back and ankle after treatment. I weigh what I weighed 40 years ago. I was taking 30mg of Oxycodone daily for the pain for about 2 weeks. Not wanting to become addicted, I’m on my third day of detoxifying, and it is no fun. Thank god and mother nature for medicinal marijuana.

So in closing, I will stick around and post as to what the progression or regression of my condition is going to be, if nothing else, to add fodder to one’s thinking about this brutal treatment. Stay well everyone...

Magnum
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Avatar universal
Well, a big hug, from one guinea-pig, to another. And good for you, to go out and do a 2 hr performance, unbelievable! xo
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1652596 tn?1342011626
your strength is amazing.  i can't believe you did a 2 hr performance.  you rock!  take care.  belle
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Avatar universal
Hi Magnum,

Sorry to hear of your failed treatment. I know how heartbreaking it is! I had a breakthur at week 36. So hard to believe treatment failed when it makes you feel so crappy. I still feel crappy and been off for a little over 2 weeks.
I see you go to doctor Gish. How do you like him? My liver guy has referred me to him. Just waiting for my appointment. I was told he's running trials on hard to treat patients. well sorry again and take care!


Linda
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