Hope4:
I also have always asked my gastro docs if I should wait or not. Five years ago, the opinion was to wait (low vl, no symptoms). This year I was told to do it (still low vl, but starting to climb). My gastro felt the success rate in the 90 percentile was worth 12 weeks. Now that I am done, I am glad to have gone this route. My body is still ridding itself of the meds (low TSH, and platelets), but that should correct itself in a few weeks.
Isiscat2011 said
Jul 27, 2014
Huey wrote:
Actually you can get better, the margin of error can be eliminated thus giving you 100+ the margin , making it 101% or whatever the margin of error is.
Just being a smartelic,
Actually you can get better than 101%. It can not only cure your virus but when you are done you will look like Brad Pitt or Angelina Jolie (in their prime)!
Just being a wisecracker. Huey, you remind me of my brother. Always the smart aleck except he also cracks jokes in the MOST dire situations. He's lucky nobody has killed him!
Huey said
Jul 27, 2014
Isiscat2011 wrote:
The best SVR rates are with Sovaldi/Ledipasvir. For gt1, tx naive, non-cirrhotics, the SVR rate is 100% in clinical trials. You can't beat that.
Actually you can get better, the margin of error can be eliminated thus giving you 100+ the margin , making it 101% or whatever the margin of error is.
Just being a smartelic,
JLynch30 said
Jul 27, 2014
absolutely - but that will not be an option for us until October the earliest.
Isiscat2011 said
Jul 26, 2014
The best SVR rates are with Sovaldi/Ledipasvir. For gt1, tx naive, non-cirrhotics, the SVR rate is 100% in clinical trials. You can't beat that.
The best option for 1 a or 1B who has previously failed treatment is sovaldi/interferon/riba
O/S are almost as effective, but it is not the first choice in the strongest way to beat this thing. If you are like me it is interferon triple (I just finished) or wait until October. This is the research I am getting
TazKat said
Jul 26, 2014
I had to do the riba & interferon since I had done the incivek 2 yrs ago. they said the incivek was a cousin to the olysio & could not do it.. it is obviously a part of the pro tease inhibitor. which i relapsed on. everyone is different. I am just praying for svr for u...
I had done the interferon & riba two times b4 & then a trial study that really messed with my vision. I am not even sure that one is still around. but then came the golden pill. & it sure was golden for me. u will do this, I know u can.
Taz
Isiscat2011 said
Jul 26, 2014
Hope4 wrote:
I had asked doctor what he would do, given my status and the options I had (one being waiting) and he said if he were me, he would take this tx for 12 weeks now. So I trusted that.
All that being said, still open for advice.
That's an interesting question to pose to your doctor and I'm sure they hear it a lot. In my experience doctors are willing to push the envelope farther than the average person with treatments for themselves because they feel more in control. If something happens they can identify the problem faster and counter-act or remedy it. I usually ask them how would they advise their wife, sister, or mother because the answer may be different. That's assuming they are really thinking about the question on a personal as well as professional level and answering with complete honesty.
If you are really still open to advice I would advise you to wait. But, I certainly understand the desire to get it done now. Bluegene's position is extreme, and notably, she's never used Int/Riba. I have. By all accounts it's a harder tx (and probably less safe) than the all orals which is why I say, given the choice, I'd wait.
-- Edited by Isiscat2011 on Sunday 27th of July 2014 02:36:20 AM
Hope4 said
Jul 26, 2014
Thanks, both Bluegene and Misosoup...
OK...Now I'm getting scared...I think I will probably be going forward with it now tho' , because everything is in place and I 've kind of geared myself up to just starting now and being done with it by the end of October .....I, too have a desk job, which I'm hoping to still manage (My boss knows I'm going to take this tx, plus one close co-worker...) I've got vacation days to plug in here and there as needed. I am really hoping for the best, but trying to prepare for the worst. Maybe I'll invest in the Cetaphil cream and ask about the Ambien.
I had asked doctor what he would do, given my status and the options I had (one being waiting) and he said if he were me, he would take this tx for 12 weeks now. So I trusted that.
All that being said, still open for advice.
misosoup said
Jul 24, 2014
Hi there! I'm more of a lurker than anything, but I started the same treatment two weeks ago tomorrow. It hasn't been so bad, I'm having a bit of trouble sleeping for more than a couple hours straight, but that's about it. Didn't start til Week 2. Headaches for about 12 hours after my injections, but nothing Tylenol doesn't help.
I'm following my doctor's advice and drinking absolutely ridiculous amounts of water, cut down the caffeine, and apply Cetaphil cream all over after the shower. They've given me Ambien for sleep, though I haven't tried it properly yet (just got it yesterday). So, I suppose that helps. I'm also aware I'm a young one compared to a lot of people here (just turned 27), so that may play a role.
I've got what basically amounts to a desk job with a lot of cognitive effort (graduate student!), and though I've been tired, I've been working fine. Perhaps a little slower than normal since they took away my energy drinks!!
bluegene said
Jul 24, 2014
To Hope4 and everyone else in her category: non-cirrhotic about to start the peg-ribavirin ride to hell... if you cannot meet the criteria needed for OS treatment, than choose the lesser of two evils and hope the government doesn't put a mandate on this golden health care with OS. The lesser of two evils would be to wait for Gileads miracle pill of the century which is due to be FDA approved by the end of the year. Clinical trials indicate a near 100% cure rate in all catagories including cirrhotics. I myself would have waited, but the virus was about to reach F-5. So I went with the available 96% cure rate-- Golden OS. Am now at day 9 in treatment-no serious side effects.
bluegene said
Jul 24, 2014
Hello Hope. As I explained to maddie and rob the risk greatly outweighs any potential gain when taking riba/peg with or without Sovaldi. The hepatologist (gastrointologist) who prescribed those killer drugs did it more out of insurance company pressure than out of Hippocratic oath. Save yourself unnecessary misery and fight to get the Golden OS all-oral combo. Be assertive with the doctor. Insist. There is criteria that must be met before being eligible for the OS combo so meet it. Find a way. Research. Ask. I don't have the time to coach in this area but Ill tell you now...riba-peg is slow death via torture. Sincerely, Bluegene.
Hope4 said
Jul 24, 2014
Hi, anyone else currently undergoing tx now with pegasys, ribavirin and sovaldi...or has finished with it? Just looking for any tips, advice and general moral support. Excited to get started but pretty nervous about the side effects. Need to keep working and hoping that works out. Grateful that it's only for 12 weeks, so keeping that thought in mind....
-- Edited by Hope4 on Thursday 24th of July 2014 11:44:56 PM
Hope4 said
Jul 24, 2014
Starting tx next week (Inf, Riba and Sovaldi 12 wks)
Actually you can get better than 101%. It can not only cure your virus but when you are done you will look like Brad Pitt or Angelina Jolie (in their prime)!
Just being a wisecracker. Huey, you remind me of my brother. Always the smart aleck except he also cracks jokes in the MOST dire situations. He's lucky nobody has killed him!
Actually you can get better, the margin of error can be eliminated thus giving you 100+ the margin , making it 101% or whatever the margin of error is.
Just being a smartelic,
absolutely - but that will not be an option for us until October the earliest.
The best SVR rates are with Sovaldi/Ledipasvir. For gt1, tx naive, non-cirrhotics, the SVR rate is 100% in clinical trials. You can't beat that.
http://www.gilead.com/news/press-releases/2014/6/gilead-announces-phase-3-data-showing-that-the-fixeddose-combination-of-ledipasvirsofosbuvir-achieved-100-percent-sustained-virologic-response-svr12-among-patients-with-chronic-hepatitis-c-in-japan
The best option for 1 a or 1B who has previously failed treatment is sovaldi/interferon/riba
O/S are almost as effective, but it is not the first choice in the strongest way to beat this thing. If you are like me it is interferon triple (I just finished) or wait until October. This is the research I am getting
I had to do the riba & interferon since I had done the incivek 2 yrs ago. they said the incivek was a cousin to the olysio & could not do it.. it is obviously a part of the pro tease inhibitor. which i relapsed on. everyone is different. I am just praying for svr for u...
I had done the interferon & riba two times b4 & then a trial study that really messed with my vision. I am not even sure that one is still around. but then came the golden pill. & it sure was golden for me. u will do this, I know u can.
Taz
That's an interesting question to pose to your doctor and I'm sure they hear it a lot. In my experience doctors are willing to push the envelope farther than the average person with treatments for themselves because they feel more in control. If something happens they can identify the problem faster and counter-act or remedy it. I usually ask them how would they advise their wife, sister, or mother because the answer may be different. That's assuming they are really thinking about the question on a personal as well as professional level and answering with complete honesty.
If you are really still open to advice I would advise you to wait. But, I certainly understand the desire to get it done now. Bluegene's position is extreme, and notably, she's never used Int/Riba. I have. By all accounts it's a harder tx (and probably less safe) than the all orals which is why I say, given the choice, I'd wait.
-- Edited by Isiscat2011 on Sunday 27th of July 2014 02:36:20 AM
Thanks, both Bluegene and Misosoup...
OK...Now I'm getting scared...I think I will probably be going forward with it now tho' , because everything is in place and I 've kind of geared myself up to just starting now and being done with it by the end of October .....I, too have a desk job, which I'm hoping to still manage (My boss knows I'm going to take this tx, plus one close co-worker...) I've got vacation days to plug in here and there as needed. I am really hoping for the best, but trying to prepare for the worst. Maybe I'll invest in the Cetaphil cream and ask about the Ambien.
I had asked doctor what he would do, given my status and the options I had (one being waiting) and he said if he were me, he would take this tx for 12 weeks now. So I trusted that.
All that being said, still open for advice.
Hi there! I'm more of a lurker than anything, but I started the same treatment two weeks ago tomorrow. It hasn't been so bad, I'm having a bit of trouble sleeping for more than a couple hours straight, but that's about it. Didn't start til Week 2. Headaches for about 12 hours after my injections, but nothing Tylenol doesn't help.
I'm following my doctor's advice and drinking absolutely ridiculous amounts of water, cut down the caffeine, and apply Cetaphil cream all over after the shower. They've given me Ambien for sleep, though I haven't tried it properly yet (just got it yesterday). So, I suppose that helps. I'm also aware I'm a young one compared to a lot of people here (just turned 27), so that may play a role.
I've got what basically amounts to a desk job with a lot of cognitive effort (graduate student!), and though I've been tired, I've been working fine. Perhaps a little slower than normal since they took away my energy drinks!!
Hi,
anyone else currently undergoing tx now with pegasys, ribavirin and sovaldi...or has finished with it? Just looking for any tips, advice and general moral support. Excited to get
started but pretty nervous about the side effects. Need to keep working and hoping that works out. Grateful that it's only for 12 weeks, so keeping that thought in mind....
-- Edited by Hope4 on Thursday 24th of July 2014 11:44:56 PM
Starting tx next week (Inf, Riba and Sovaldi 12 wks)