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update on progress at 3 mos. post tx
Hi Everyone,
I have said I would keep everyone in the loop about my treatment and this is my 3 mos post tx update.
I treated with Peg+riba+incivek. I only made it 9.6 weeks on incivek when my doctor had me stop due to rash. I was UND at weeks 4,8,12, 24. I found out yesterday that I am also am UND at 13 weeks post treatment. That is outsatnding news. We ran the test because I still break out in a rash occasionally. It comes and goes. It is around the base of my neck in the front and I have a small patch on my forearm. It is somewhat similar in appearance to the rash I had but it is different in that the old rash was deeper. This one can literally appear in seconds and disappear just as quickly. The symptoms that I still have are a very painful shoulder. I experienced a lot of joint pain during treatment and for the most part the shoulder is only joint that still hurts. I still get some physical tenseness occasionally (Jasmine coined this term- it is hard to describe but that fits it pretty well) and don't respond well to stress. I also get a little anxious. Having said all of that I will also tell you that I am very happy. Not just because of the UND but truly happy. I enjoy life every day. I am happy that I treated. Yes, my hair is way thin (it is growing back but with my hair in a ponytail I look like a dandelion in the wind- LOL), my shoulder hurts and I get stressed when I normally wouldn't, and I have the rash but I am happy. I am energetic and doing fun new things in my life.
I need to thank the people on this forum who have gotten me through so much. When I found this site I was terrified of the disease and the treatment. Your support and advice got me through this treatment. Between all of you, my doctor, my husband, and a dear friend I met on this forum I am here healthier and happier than ever before and hopefully free of hep c for good. I am still going to get the blood test at week 24 post treatment and will report the results. Meantime I will chime in here when ever I can to help.
Thank you all so much! I am praying for UND for all of you too. Godspeed on your journeys!
G
I have said I would keep everyone in the loop about my treatment and this is my 3 mos post tx update.
I treated with Peg+riba+incivek. I only made it 9.6 weeks on incivek when my doctor had me stop due to rash. I was UND at weeks 4,8,12, 24. I found out yesterday that I am also am UND at 13 weeks post treatment. That is outsatnding news. We ran the test because I still break out in a rash occasionally. It comes and goes. It is around the base of my neck in the front and I have a small patch on my forearm. It is somewhat similar in appearance to the rash I had but it is different in that the old rash was deeper. This one can literally appear in seconds and disappear just as quickly. The symptoms that I still have are a very painful shoulder. I experienced a lot of joint pain during treatment and for the most part the shoulder is only joint that still hurts. I still get some physical tenseness occasionally (Jasmine coined this term- it is hard to describe but that fits it pretty well) and don't respond well to stress. I also get a little anxious. Having said all of that I will also tell you that I am very happy. Not just because of the UND but truly happy. I enjoy life every day. I am happy that I treated. Yes, my hair is way thin (it is growing back but with my hair in a ponytail I look like a dandelion in the wind- LOL), my shoulder hurts and I get stressed when I normally wouldn't, and I have the rash but I am happy. I am energetic and doing fun new things in my life.
I need to thank the people on this forum who have gotten me through so much. When I found this site I was terrified of the disease and the treatment. Your support and advice got me through this treatment. Between all of you, my doctor, my husband, and a dear friend I met on this forum I am here healthier and happier than ever before and hopefully free of hep c for good. I am still going to get the blood test at week 24 post treatment and will report the results. Meantime I will chime in here when ever I can to help.
Thank you all so much! I am praying for UND for all of you too. Godspeed on your journeys!
G
I should have added that this does not mean that I am hep c free but it the chance of a relapse after this length of time is greatly reduced. Just wanted to clear that up for the newbies.
G
G
You are so lucky to clear virus after only 9.6 weeks. I did read somewhere that they were going to test a svr after only 12 weeks of tx. That incevek kicks but. Not easy to deal with side affects though but worth svr.Fortune tally, i did not get a rash but, had other problems. I got so weak I could barley walk I fainted and need blood transfusions. I felt 100% better after the transfusions though. Just sorry the Doctor waited so long to order the transfusions.
You are 3 mos post tx also? I should have said once I stopped incivek I continued with Peg and riba for the remaining 24 weeks. I am wondering if you were able to finish tx after the transfusions?
I agree with you that Incivek kicks some serious. It sounds like you had your share. Good luck and I hope you are SVR.
I agree with you that Incivek kicks some serious. It sounds like you had your share. Good luck and I hope you are SVR.
G, that is really great news. i'm very happy for you. good luck with your new found health. i can't wait. i have 9 more weeks. take care of yourself. belle
Thanks Belle! I will be looking for you in nine weeks. You have been so brave and done so well. I pray that success will be yours.
G
G
It is great to hear you are UND at 12 weeks post tx. It looks very good for SVR. It is good to hear the success stories and it gives us all hope. Congratualtions on finishing tx and on your UND status at 12 weeks post tx.
I was discontinued at 9 weeks too while continued (and continuing) on the interferon/ribo for 48 weeks. Although I was formally discontinued because of the rash it was the intractable anemia that stopped any protest from me. I have cirrhosis, was a previous non/partial responder to mono and dual therapy. This time around on Incivek, etc. I was undetectable in about a week and remain completely undetectable at 8 months. My EVR leads me to be optimistic about continuity towards SVR....d
Hi Gerbils: Thanks for the update. Looks like Ellen started treatment 3 weeks after you did. Now, it's on to 6-month SVR and being cured!. Cheers, GB
Hi there! You may or may not have read my previous post but it was my first and since I read that you have cirrhosis, I would like to paste my first post here for you in hopes that you will share your story and experience with me, and perhaps shed some light or offer advice. Anything helps. Thank you in advance!
My grandmother has had Hepatitis C for years and she is now 69 years old. She has been drug and alcohol free for over 35 years but the damage was already in progress. She never did the treatment for Hep C because her gastric doctor thought it would be too harsh for someone her age. She just got a liver biopsy and has been diagnosed with Cirrhosis of the liver stage 3/4 (stage 3, border line 4) yet she has absolutely no visible symptoms at all. I'm just afraid of the unknown and the days ahead. I reassure her that she and everything will be okay but Lord knows I'm terrified, and I've cried alone each night since her diagnosis. Anything you can share with me would be greatly appreciated. Thank you again in advance!
My grandmother has had Hepatitis C for years and she is now 69 years old. She has been drug and alcohol free for over 35 years but the damage was already in progress. She never did the treatment for Hep C because her gastric doctor thought it would be too harsh for someone her age. She just got a liver biopsy and has been diagnosed with Cirrhosis of the liver stage 3/4 (stage 3, border line 4) yet she has absolutely no visible symptoms at all. I'm just afraid of the unknown and the days ahead. I reassure her that she and everything will be okay but Lord knows I'm terrified, and I've cried alone each night since her diagnosis. Anything you can share with me would be greatly appreciated. Thank you again in advance!
You are amazing to have gone through so much. My doctor had one patient that took Incivek for less time than you, was EVR but completed the rest of the treatment period with peg and riba and SVR'd. Thanks for posting. I sure hope you SVR!
G
G
I am beyond happy for you! Congratulations, you are a dear to share with everyone
Big bear hugs ((()))!!!
D
Big bear hugs ((()))!!!
D
What wonderful news. Your story certainly gives me inspiration. Thank you for sharing and continued good health!
What a happy post! I'm so happy for you and your husband, odds are completely in your favor for SVR.
Was hoping to hear this good news for you and so happy to hear it. Congrats, things are looking very good for you. :-)
Great news! A very strong indicator you made! I am so happy for you and it sounds like the sx are dissipating too. Hoping the best for you.
Great News never get tired of hearing these success stories. I surely hope this is the treatment that slays the dragon for me!
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