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SVR after tripple treat of Incivek
Hello, one thing that I was desperate for during tx was for people to come back and tell us how they were doing.
I started out with HCV, Cryogloinema, Cirrhosis, Diabetes, low Thyroid. My doctor said that in my case it would be very hard to treat. He then said he was only having me do 24 weeks, since I was a previous relapser. He said he would not subject my liver to the additional 24 weeks that "may help" me get to SVR. He has been involved in trials and Studies at Translational Inst at INOVA Fairfax VA Hospital with Dr Younnissi
I did the tx, it was awful as people can probably see in my journals or in my posts here and there :)
I did get to UND within the first 4 weeks, then UND at 24 weeks, 3 months later, 6 months later same
Now I am almost 16 months post tx. I recently had blood work, I am SVR and my doctor said they are now considering this a cure. He also said they are finding that while the liver regenerates it is also regenerating the scarred tissue. I feel better than I have in years. My mind is clear, my hair is growing back, my muscles are building back up. I am very happy that I took the chance
JimJim530 came back and said he went from a 3-4 and now is normal, that is great news and I hope encouraging to others on tx.
I hope that others will comment on how they are doing post tx to encourage those behind us, just like we were encouraged by those who went before.
I try to pay is forward.
MedHelp, thank you for this wonderful site where so many fantastic loveing, supportive people have all come together to help each other. I could not have gotten through the tx without everyone here
Please say a prayer for HectorSF, he is my hero.
Thank you all so much for your encouragement, support, advice, tips, etc. I wish I had bought some stock in Walmart before starting tx, we were there every day or two :)
I started out with HCV, Cryogloinema, Cirrhosis, Diabetes, low Thyroid. My doctor said that in my case it would be very hard to treat. He then said he was only having me do 24 weeks, since I was a previous relapser. He said he would not subject my liver to the additional 24 weeks that "may help" me get to SVR. He has been involved in trials and Studies at Translational Inst at INOVA Fairfax VA Hospital with Dr Younnissi
I did the tx, it was awful as people can probably see in my journals or in my posts here and there :)
I did get to UND within the first 4 weeks, then UND at 24 weeks, 3 months later, 6 months later same
Now I am almost 16 months post tx. I recently had blood work, I am SVR and my doctor said they are now considering this a cure. He also said they are finding that while the liver regenerates it is also regenerating the scarred tissue. I feel better than I have in years. My mind is clear, my hair is growing back, my muscles are building back up. I am very happy that I took the chance
JimJim530 came back and said he went from a 3-4 and now is normal, that is great news and I hope encouraging to others on tx.
I hope that others will comment on how they are doing post tx to encourage those behind us, just like we were encouraged by those who went before.
I try to pay is forward.
MedHelp, thank you for this wonderful site where so many fantastic loveing, supportive people have all come together to help each other. I could not have gotten through the tx without everyone here
Please say a prayer for HectorSF, he is my hero.
Thank you all so much for your encouragement, support, advice, tips, etc. I wish I had bought some stock in Walmart before starting tx, we were there every day or two :)
Some of you will remember me, I was in a clinical trial for Incivek (Telaprevir at the time). I was diagnosed in 1996 and did not treat till 2008 because I was concerned about the psychiatric side effects of interferon, and because the chance of cure then was only about 30-40% after a year of tx. So I waited, and worried about my health. I had already been diagnosed with hypothyroidism many years before but other than my liver disease, my health was very good. I had some vague GI issues, sometimes heartburn, irritable-bowel symptoms, morning nausea, and severe muscle spasms at times, but overall I felt well.
I was in a group that only got the study drug, telaprevir, for the first 8 wks, and I completed tx at wk 24. At my 3-yr hepatology visit, I was told that they did not need to see me anymore, every VL had been UND, and I am no longer a liver patient.
My biopsy before tx was G1, S1-2 (it had been G2 S2 the year before). I felt so fortunate to have been able to complete tx in 24 wks, and it is good to think that my liver damage is regressing.
It was a year before I really felt like myself again. I slowly lost some weight after tx (without really trying, had been overweight for years). My cholesterol, which had always been around 176, became elevated after tx but still did not go above 200. Sometimes I get odd rashes, which I did not get before tx, but they are manageable. I no longer get the painful and long-lasting muscle spasms I used to get. Everything else has returned to normal or better than before.
For those in tx or waiting for the SVR report, hang in there! It is worth it. Tx was difficult, the anemia was the worst side for me, and the GI side effects were horrible, but it was worth it for me, to be rid of Hep C.
I was in a group that only got the study drug, telaprevir, for the first 8 wks, and I completed tx at wk 24. At my 3-yr hepatology visit, I was told that they did not need to see me anymore, every VL had been UND, and I am no longer a liver patient.
My biopsy before tx was G1, S1-2 (it had been G2 S2 the year before). I felt so fortunate to have been able to complete tx in 24 wks, and it is good to think that my liver damage is regressing.
It was a year before I really felt like myself again. I slowly lost some weight after tx (without really trying, had been overweight for years). My cholesterol, which had always been around 176, became elevated after tx but still did not go above 200. Sometimes I get odd rashes, which I did not get before tx, but they are manageable. I no longer get the painful and long-lasting muscle spasms I used to get. Everything else has returned to normal or better than before.
For those in tx or waiting for the SVR report, hang in there! It is worth it. Tx was difficult, the anemia was the worst side for me, and the GI side effects were horrible, but it was worth it for me, to be rid of Hep C.
WOW! You guys are the best! Pooh, Cean, thank you so much for sharing your experience it helps those behind us to hear, it gave me hope to hear of those ahead in the journey. Gerbils was a couple of months ahead of me and she really gave me hope that I would improve.
Cean, you will get there, everyone percolates a little differently. You are so right, I meant to type triple threat, no way was that a treat. Other than making me realize I am stronger than I ever thought, it was not treat. If my husband had an account he would triple that one :)
The charlie horse cramps that brought me to my knees while walking scared him a lot. The mouth sores, th boil ugh. being half bald, not fun
And those are just the highlights ha ha
I do have to say that every day does get better, what helps me is to look back to where I was a year ago. A year ago I was obsessing about my hair loss, did not have any and it was still falling. I was worried about my platelets. I could not see the forest for the trees. I don't want to say it took me a year but it did. My mind is so clear it scares my husband ha ha, cause now he can't blame my memory for things he never told me.
To everyone who posted, you help me too. You help me remember where I was, how far I have come and I remember the people up ahead of me on this journey who reach back and lent a hand. I will always be grateful. I could not have done it without this community.
Keep your eye on the prize. When you get down, tell yourself it is the medication. I thought I would be able to do that but I could not remember from day to day. I finally wrote it every where "It is the medication"
Of course you want to get help for your side effects there is no reason to suffer if there is something that will help you
All my best, Dee
Cean, you will get there, everyone percolates a little differently. You are so right, I meant to type triple threat, no way was that a treat. Other than making me realize I am stronger than I ever thought, it was not treat. If my husband had an account he would triple that one :)
The charlie horse cramps that brought me to my knees while walking scared him a lot. The mouth sores, th boil ugh. being half bald, not fun
And those are just the highlights ha ha
I do have to say that every day does get better, what helps me is to look back to where I was a year ago. A year ago I was obsessing about my hair loss, did not have any and it was still falling. I was worried about my platelets. I could not see the forest for the trees. I don't want to say it took me a year but it did. My mind is so clear it scares my husband ha ha, cause now he can't blame my memory for things he never told me.
To everyone who posted, you help me too. You help me remember where I was, how far I have come and I remember the people up ahead of me on this journey who reach back and lent a hand. I will always be grateful. I could not have done it without this community.
Keep your eye on the prize. When you get down, tell yourself it is the medication. I thought I would be able to do that but I could not remember from day to day. I finally wrote it every where "It is the medication"
Of course you want to get help for your side effects there is no reason to suffer if there is something that will help you
All my best, Dee
You made our day Dee its great to hear and gives us all such a lift. My hubby 8wk post tx with Teleprevir so we wont know for a while if he SVR he to did 24wk and was UND from wk4 so you given us much needed hope! Thanx for sharing i to think Hector a hero and you are to Much love Jules xx ps Big hug coming all the way from England!! xxx
Triple treat? That is an ironic typo! Dee and Pooh, you two are great, and I'm so happy for you. I'm happy for myself too, although I'm a little disappointed that I'm not YET doing as great s either of you – but I'm emphasizing the yet. I am SVR, and that is what is most important. I was diagnosed in 1986 (with non-A/non-B initially), treated in 1994 and failed, developed cirrhosis by 2005, treated again in 2005-2006 (72 weeks of interferon and ribavirin) and relapsed, then finally did 48 weeks of triple tx with Incivek, finishing in September of 2012 and finally achieved SVR. I'm about 9 months post-EOT and I'm not yet back to feeling great, but I AM still getting slowly better. I will catch up with Pooh and Dee one of these days! You guys who are still struggling with tx, take heart. Most people do achieve SVR on it, and most people start feeling a lot better, its just that we all need different amounts of time to do it. Hang in there, the SVR is worth it!
Correction:
The part about the extrahepatic manifestations should read:
*Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia 1993-94;
*Severe Fatigue
The systemic vasculitis was in 1993-94. The severe fatigue came later, progressing slowly, but by 2007 or so it was severe and stayed that way until after Tx.
The part about the extrahepatic manifestations should read:
*Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia 1993-94;
*Severe Fatigue
The systemic vasculitis was in 1993-94. The severe fatigue came later, progressing slowly, but by 2007 or so it was severe and stayed that way until after Tx.
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