Aa
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
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
As an addendum, three months after stopping treatment, my platelets went from a dangerous low of 24 to 72 now. However, my ALT went from a normal range during treatment to now at a high of 124. The AST went from 58 under treatment to a high now of 136. Something is causing inflamation of the liver. I take fish oil, 2000iu vitamin D, Super-B Complex, multi-vitamin with no iron and Milk Thistle daily.
The nausea didn’t happen until I stopped the Oxycodone pain pills. The way my Gastro explained addiction is that there are two types. Mental and physical. I’m going through the physical withdrawal of Oxycodone. Although it’s been said Oxycodone won’t affect the liver, again I feel it’s subjective to each individual. The liver swelling could possibly be the result of the Oxycodone.
Energy level is low now and the pain level has been exacerbated by treatment. If your muscle mass is atrophied, then the muscles holding up your skeletal frame are not supporting the framework properly. Therefore the pain is amplified, especially in the lower back. Not allowed to take Tylenol, Ibuprofen and any anti-inflamatories.
There is also a double-edge sword in the protein benefit. In other words, I’m to eat more protein. Fish, meant, nuts, etc.. However, too much protein is hard on the liver. So round and round we go again with theories. I was also told to stop drinking coffee. I will have a thyroid test done very soon.
The mind over matter is very important at this juncture. To cave in is to end all hope. To push forward regardless of the pain, nausea, Insomnia, is the way I choose to go. There is no easy way for anyone on these brutal treatments. However, those that have cleared through paying the price of suffering, can now lead a better life. By the way, I asked Dr. Gish if after I’m finally cleared if I can have a glass of wine daily. His answer..... NO!
Magnum
The nausea didn’t happen until I stopped the Oxycodone pain pills. The way my Gastro explained addiction is that there are two types. Mental and physical. I’m going through the physical withdrawal of Oxycodone. Although it’s been said Oxycodone won’t affect the liver, again I feel it’s subjective to each individual. The liver swelling could possibly be the result of the Oxycodone.
Energy level is low now and the pain level has been exacerbated by treatment. If your muscle mass is atrophied, then the muscles holding up your skeletal frame are not supporting the framework properly. Therefore the pain is amplified, especially in the lower back. Not allowed to take Tylenol, Ibuprofen and any anti-inflamatories.
There is also a double-edge sword in the protein benefit. In other words, I’m to eat more protein. Fish, meant, nuts, etc.. However, too much protein is hard on the liver. So round and round we go again with theories. I was also told to stop drinking coffee. I will have a thyroid test done very soon.
The mind over matter is very important at this juncture. To cave in is to end all hope. To push forward regardless of the pain, nausea, Insomnia, is the way I choose to go. There is no easy way for anyone on these brutal treatments. However, those that have cleared through paying the price of suffering, can now lead a better life. By the way, I asked Dr. Gish if after I’m finally cleared if I can have a glass of wine daily. His answer..... NO!
Magnum
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
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
your strength is amazing. i can't believe you did a 2 hr performance. you rock! take care. belle
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
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
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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