"Shock and awe" - - that's a great way to put it, Nirmalee Looks like you have a super team behind you. It's interesting that our side effects seem to be similar. Best of luck to you. Slay that dragon!
- Tess
dragonfly said
Mar 16, 2015
Hi, I've been on a slightly different treastment to yours as I am Geno3 but out of the 21 people enrolled in the scheme under compaissionate grounds no one had to do the 24 weeks originally posited as a time frame. I was negative by week 2 and will get my final clearance in April but every test has come back negative. My consultant is one of the best in the country and totally dedicated to achieving SVR for all his patients. Like you I have unexplained aches and pains and then days when I feel as if someone has donated their energy to me for a day. Joint and muscular pain has now become associated with these new treatments as well as other symptoms such as itching etc. My medical team is taking good care of me and investigate every side-effect even if it is not major. I hope that this will help others who go through this. The one thing that I learned from this experience is that even though these drugs are not Inteferon, they can still make you pretty sick.. If you have had this virus for a long time (over 30 years in my case) you need something strong to remove it and what the drugs seem to do is to "shock and awe" the virus to high-tail it out of your system. It might take a little time but you will be ok!
Nirmalee x
Tess said
Mar 15, 2015
Thanks Angelseven, Matt, Pamigo, FL and Tig! It's really amazing how far the treatments have come in such a short time. Pamigo and FL, best of luck with those upcoming results!
We are in the first wave of Harvoni patients outside of the trials. The trials gave us numbers but now we get to learn from real life experiences. On another thread I think it was Tig who said that his joint pain after treatment with an earlier protocol has improved with time. It will be interesting to find out if there are post treatment issues with Harvoni, and if so if they change over time.
Lately I've had some extra aches and pains mostly in my neck and shoulder, and I don't know if it's just my old bones getting older or if it's related to the treatment/post treatment. I guess time will tell! On the good side, there are times when I get a burst of energy like I haven't had in a long time. Yeeha!
-- Edited by Tess on Monday 16th of March 2015 01:16:41 AM
-- Edited by Tess on Monday 16th of March 2015 01:28:06 AM
Tig said
Mar 15, 2015
Lots of good news and completed treatments here! Plenty of upcoming viral load tests on the way as well. It's time to try and be positive about your chances of success. 95+% are pretty good odds everyone. Back in the day (one big year ago, lol), our odds were 70-80% after 6 months to nearly a year of ugly treatment. We were afraid too, but we rallied together and many succeeded and a few didn't. We always encouraged each other to remain positive. Your only difference is time and medication. Your desire to win and the concern of failing is no different. Trust me, we that have gone on to SVR and those that didn't, understand your concern. Your odds have never been better, and no protocol has ever been as effective as Harvoni! I think you have a lot to be encouraged about. If somebody told me I had a better than 95+% chance of winning the lottery if I would buy one ticket, I think I'd be figuring out how to spend all that money!!! If I were you, I'd be planning how you're going to enjoy your new Hep C free life! You have done your best and that is the most important part of this battle with the dragon. Stay positive and good luck to all of you...
Tig
fourlocos said
Mar 15, 2015
Well said. I am feeling the same way. Hoping for the best but prepared for bad news. I also was tested at 4 and 8 weeks. Did the 8 week plan. Now I wait till April 28th for the next test. I wish they would test me now. But they are not the easiest people to ask anything of and I just decided to wait it out hard as that is.
pamigo said
Mar 15, 2015
Tess,
Very well said!!
Best of luck!
i get my 4 week post harvoni results back in a couple of days.....
My feelings and thoughts are kind of racing as you know...
Pamigo
Matt Chris said
Mar 14, 2015
Hey Tess
Looking forward to the coming good news from your Labs, way to go with your persistence to convince your health care team to do a EOT+ 4 weeks viral load test.
Your vision and attitude is refreshing, you will very likely will reach SVR with your great viewpoint.
Pulling for you with thoughts of grace
matt
angelseven said
Mar 14, 2015
Good luck Tess!!!
Tess said
Mar 13, 2015
Finished 12 weeks on Harvoni a few weeks ago and 4 week post tx Viral Load test is coming up on Wednesday. I had to ask a couple of times before the doctor (or the NP - - not sure who makes the decisions) agreed to a 4 week post tx VL test. They wanted to wait 6 months!
Viral Load at the end of treatment was UND, but based on the trials (correct me if I'm wrong) I think everyone on Harvoni will be UND at EOT. It's the post tx results that tell the tale. Even though the SVR rates for Harvoni are great, 5 or so of us out of 100 will relapse. So I'm hoping for good news but prepared for bad news.
Whatever the result, I'm so very grateful to have had the opportunity to take Harvoni. The sides weren't anything compared to what I've heard about the earlier treatments and my liver had a nice chance to rejuvenate. I think memory has improved and I feel better overall, although "different". Maybe the improved memory is bringing up things that were stashed away?
Best of luck to everyone and thanks for the support here through it all.
"Shock and awe" - - that's a great way to put it, Nirmalee
Looks like you have a super team behind you. It's interesting that our side effects seem to be similar. Best of luck to you. Slay that dragon!
- Tess
Hi, I've been on a slightly different treastment to yours as I am Geno3 but out of the 21 people enrolled in the scheme under compaissionate grounds no one had to do the 24 weeks originally posited as a time frame. I was negative by week 2 and will get my final clearance in April but every test has come back negative. My consultant is one of the best in the country and totally dedicated to achieving SVR for all his patients. Like you I have unexplained aches and pains and then days when I feel as if someone has donated their energy to me for a day. Joint and muscular pain has now become associated with these new treatments as well as other symptoms such as itching etc. My medical team is taking good care of me and investigate every side-effect even if it is not major. I hope that this will help others who go through this. The one thing that I learned from this experience is that even though these drugs are not Inteferon, they can still make you pretty sick.. If you have had this virus for a long time (over 30 years in my case) you need something strong to remove it and what the drugs seem to do is to "shock and awe" the virus to high-tail it out of your system. It might take a little time but you will be ok!
Nirmalee x
Thanks Angelseven, Matt, Pamigo, FL and Tig! It's really amazing how far the treatments have come in such a short time. Pamigo and FL, best of luck with those upcoming results!
We are in the first wave of Harvoni patients outside of the trials. The trials gave us numbers but now we get to learn from real life experiences. On another thread I think it was Tig who said that his joint pain after treatment with an earlier protocol has improved with time. It will be interesting to find out if there are post treatment issues with Harvoni, and if so if they change over time.
Lately I've had some extra aches and pains mostly in my neck and shoulder, and I don't know if it's just my old bones getting older or if it's related to the treatment/post treatment. I guess time will tell! On the good side, there are times when I get a burst of energy like I haven't had in a long time. Yeeha!
-- Edited by Tess on Monday 16th of March 2015 01:16:41 AM
-- Edited by Tess on Monday 16th of March 2015 01:28:06 AM
Lots of good news and completed treatments here! Plenty of upcoming viral load tests on the way as well. It's time to try and be positive about your chances of success. 95+% are pretty good odds everyone. Back in the day (one big year ago, lol), our odds were 70-80% after 6 months to nearly a year of ugly treatment. We were afraid too, but we rallied together and many succeeded and a few didn't. We always encouraged each other to remain positive. Your only difference is time and medication. Your desire to win and the concern of failing is no different. Trust me, we that have gone on to SVR and those that didn't, understand your concern. Your odds have never been better, and no protocol has ever been as effective as Harvoni! I think you have a lot to be encouraged about. If somebody told me I had a better than 95+% chance of winning the lottery if I would buy one ticket, I think I'd be figuring out how to spend all that money!!! If I were you, I'd be planning how you're going to enjoy your new Hep C free life! You have done your best and that is the most important part of this battle with the dragon. Stay positive and good luck to all of you...
Tig
Well said. I am feeling the same way. Hoping for the best but prepared for bad news. I also was tested at 4 and 8 weeks. Did the 8 week plan. Now I wait till April 28th for the next test. I wish they would test me now. But they are not the easiest people to ask anything of and I just decided to wait it out hard as that is.
Tess,
Very well said!!
Best of luck!
i get my 4 week post harvoni results back in a couple of days.....
My feelings and thoughts are kind of racing as you know...
Pamigo
Hey Tess
Looking forward to the coming good news from your Labs, way to go with your persistence to convince your health care team to do a EOT+ 4 weeks viral load test.
Your vision and attitude is refreshing, you will very likely will reach SVR with your great viewpoint.
Pulling for you with thoughts of grace
matt
Finished 12 weeks on Harvoni a few weeks ago and 4 week post tx Viral Load test is coming up on Wednesday. I had to ask a couple of times before the doctor (or the NP - - not sure who makes the decisions) agreed to a 4 week post tx VL test. They wanted to wait 6 months!
Viral Load at the end of treatment was UND, but based on the trials (correct me if I'm wrong) I think everyone on Harvoni will be UND at EOT. It's the post tx results that tell the tale. Even though the SVR rates for Harvoni are great, 5 or so of us out of 100 will relapse. So I'm hoping for good news but prepared for bad news.
Whatever the result, I'm so very grateful to have had the opportunity to take Harvoni. The sides weren't anything compared to what I've heard about the earlier treatments and my liver had a nice chance to rejuvenate. I think memory has improved and I feel better overall, although "different". Maybe the improved memory is bringing up things that were stashed away?
Best of luck to everyone and thanks for the support here through it all.
- Tess