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Post Info TOPIC: Sapphire drug trial


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RE: Sapphire drug trial
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Thanks very much for that Malcolm, its most encouraging, espec about the ribavirin. Good luck with your fibroscan!



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Hi Marian,

From what I've seen, the Abbott drugs are pretty much gone within 2 weeks of finishing Rx. The Ribavirin can hang around for much longer- up to 6 months in some people. This is why birth control must be continued. You should get a good idea from your Hb- once it is back to pre-Rx levels, most of the Riba is gone.

The Fibroscan result does decrease in many people. My initial reading was very high at 30.1 kPa and I will get it repeated in 3 weeks (6 months post Rx). I'm expecting it to drop down to hopefully 12-20 kPa. I have seen cirrhotics drop from 19 to 7 after SVR, and my doc. says this happens in over 70% of cases. Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Hi George, Congrats on your new health status, it must feel just great! I am also a NZ'er doing the Sapphire Trial, except I was on the placebo and am now into my third week of the real meds. I am having side effects from the ribavirin - exhaustion and a very short fuse. I am wondering how long the side effects last after the medication is finished? I kind of thought that when the meds are finished the side-effects would be too, but after trawling around the web and looking at various sites I am a bit worried that they will last much longer.....but having said that I would put up with pretty much anything to get rid of this disease.

Just a quick word on your fibroscan results, I have seen on various websites that often people get a much better fibroscan score after completing treatment, that once the virus is cleared the liver can recover substantially. Don't know how true this is but I have my fingers crossed. I did ask the research nurse and she was fairly cagey but didn't rule it out.

 

 

 



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Thanks all.     Will keep posting on this site.  It's been the first place I haven't felt like some sort of lesser being for contracting hep c.  Back to when I was first diagnosed there was certainly a real stigma associated with the virus.  you very quickly get learn that there are lots of others that have, and are experiencing the same problems that are not easy to talk about.   For many years I have been resigned to the fact that my life would be significantly shorter than it would other wise have been, but for some wayward choices in my youth.  This wasn't helped by the limited understanding of the virus going back not that many years.  

medicine and understanding has come a long way.  The team that took me through the trial here in New Zealand were really nice people.   I just hope these new drugs are released through national Health schemes soon so more can benefit.   I will never forget the feeling of thinking it was all down hill after learning I had the virus, not to mention fear of infecting someone accidentally.   

LIVE HEALTHY,  LIVE LONG   And stay off the alcohol.  Wish I'd thought of that earlier and I wouldn't have F3 liver fibrosis. 



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What excellent news, George, congrats!!  You must be thrilled!  biggrin  When do you get your next follow up?

Thanks for sharing your journey with us, I`m glad we could be here for you!

(PS - I`ve joined this new thread into your original one, here in the Clinical Trial Participants area.)

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Great news George, you're going to beat this thing. Keep us informed..Good Luck!!



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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congratulations - no virus , that should be final

best wishes



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Hi All,   Just thought I should report in to say I have received my results from the sapphire drug trial.  The last test (2nd week after the trail ended) shows not detectable virus.   As you can imagine this is fantastic. For years they have been telling me that with my geno type chances of getting rid of the virus where relatively low. So to here it's not detectable from a viral load of 13 million I'm pretty happy.  Bottom line there is a good chance for all of us with the new drug programmes.   I do have to thank my wife enormously for sticking by me through this rather unusual time.  Stick with the treatments everyone,.   And thanks for every ones support. I've found this site to be very helpful and has given me the Boost I have needed in the down times. 



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Congrats George 

Keep up all your good habits that you developed on the trial.

Enjoy that almost weightless feeling you will get after being off the Meds for the first four weeks.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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Well done, George, and great news that you were on the real meds!  You`re so right, `never give up` is a good motto to have for anyone trying to clear the virus!  Keep us posted on your results...thanks for the update!  smile



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi George,

Congratz on getting to the end. Good luck for the results to come. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Thanks Bob,

this trial has been the first really positive treatment I have had.

the previous options had relatively low success rates.  I suppose the moral to

this one is never give up. The treatment options are now very. Successful.

 

Regards

Deadeye



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Good Luck George, hope your wait is not long.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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Hi everyone,

just finished the 12week trial today.   Found out I was on the real meds not the placebo.

now the waiting game to see if the results are good.  Should be good as I understand that 

they are getting 97.5 percent pass with the Abott meds. 

For anyone starting this treatment, it would have to have the least side effects that I am aware of.  Other than being a little grumpy in the middle of the treatment and somewhat lethargic it's been a very easy ride. 

Highly recommend these meds. 

If you get the chance go for it. 

 

Regards

Deadeye



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Hi Valerie, great news, and it sounds like you got through it without too much difficulty at all.   Any treatment with ribavirin usually comes with a few side effects but having no shots this time must have made a huge difference!  Well done, and good luck with your blood results...keep us posted!  smile    ~ Jill

ps - Yes, buying Abbott shares sounds like a very tempting idea actually! wink



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi All,

I finished my 12 weeks today.  I got the real drugs, and now I am in the follow up.  I was sure I had the real drugs, and the nurse said today, I was Arm A.  I still work full time, and been working about 45 hrs a week.  I found the headaches the worsed, starting about the 3rd day, and always a little one but nothing too bad.  I did find the Ribavirin, dried my eyes out of course I was crabby for a couple of weeks at the start, but you kind of settle in.  There was one side effect that I had, but another lady that finished on Monday of this week, and also got the real drugs didnt mention. I had the fatigue too, but I think I have been tired for so long it didnt bother me. I found a terrible metallic taste in my mouth but I think it only started after 4 or 6 weeks.  I chewed Juicy Fruit like crazy.  MMMMMMMM.  Actually I saw the Dr and nurse today, and both said yes many drugs do that.  So when i mentioned it the nurse already was sure I had got the real drugs.  So, 2 of us are done, and she has 4 patients left.  She said she will email all the results from today's blood work, but doesn't know when the other weeks will be unblinded.  I would have to say, having no interferon this time was a bonus, and last time I had weekly blood work and the neupogen, so I was sick of needles. It was ok to get booted from that study, this was 100% better.  So, hang in there everyone, and just keep getting thru the days.  Now I will see how the follow up goes.  take care everyone. Buy Abbott shares!!!!!!!!!!!!!!!!  before the phase 3 results are released .lol

newby45555

 

 



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Deadeye wrote:
In hind sight it could be that while going to work has been tough it takes my mind off the physical and mental issues of the drugs. 

 I agree George, i can feel very crappy but i force myself out of the house to go to work and i start feeling lots better.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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Hi Guys,

thanks for the support. It's really quite weird in that there are days when everything seems a major problem. Having said that the last two days have been no where as bad as the weekend.  In hind sight it could be that while going to work has been tough it takes my mind off the physical and mental issues of the drugs.   

this is a wonderful site and has made me not feel as I'm alone.   

I look forward to providing others with the same support. 

Only three weeks to go!     

hope the results are good and act as an incentive for others to Knock this virus for six.

 

thanks again 

 

George 



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Hey George

Hang in there, find a time for a rest / nap. l

Listen to your body but try to exercise in the morning it can set the mood for a good part of the day, also it will help circulate the Meds to all parts of your body.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



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Hi George, sorry to hear you`re having a hard time.  The side effect seem to vary from person to person on these Abbott trials, and I`m sure you`re not imagining how you`re feeling.  Take it easy and try and get as much rest and relaxation as you can.  Stay in touch and remember you can talk to us any time.  smile

You`re getting through it...all the best, Jill

ps - I`ve joined your 2 thread together.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hang in there George, you're fighting a good fight. Fatigue seems to a common part of all treatment. Try to stay rested and not push yourself to much. You gonna be free of this disease very soon, i have hope..Cheers



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~



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Hi 

i'm on my ninth week of the Abbott sapphire trial and have started to feel quite low.

fatigue is almost constant now. And have lost my apatite.  All of these sump toms seem to have only been really noticeable from six weeks into the trial.  They deem to be getting worse. A have others experienced similar results or is this all in my head. Feeling quite odd at the moment.

 

regards 

Deadeye



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Hi Again,

Thanks for the replies. It's good to be able to connect with others that understand the situation.
It's been an interesting week with a few heated moments.

I think the key is to avoid potential inflammatory situations. Will be seeing the drug trial people on Thursday to give more blood and an update on how things are going.

I know it can seem difficult at times. I have been getting a bit clouded in my thinking the further along I go in this trail. I even drove off from a gas station with out paying after filling up this week. I went straight back, but not a normal thing for me to be doing. From the feed back it would seem that I am on the meds.

And the results to date all point to the Abbott drugs being right up there with the best.

Have had the hep c for probably close to 25 yrs so looking forward to kicking it out.

I remember it causing me all sorts of issues in regards to who should be told etc.
there was always a social stigma with hep c.


Thaks for all the replies.

Will stay in touch and update with the results of my trial.


Regards

George

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Hi George, welcome from me too.  Well done for getting on this trial, you should do well.  We can all relate to the fatigue and short temper issues while on treatment, let`s hope you are on the real meds then!  Looking forward to following your progress.  Best of luck.



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

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Hello George and welcome to the forum 

Sounds like you are on the real Meds and dealing with RIBA Rage, it's a side effect of the Ribavirin 

I had the same issue. Try to keep yourself from situations and conversations that are inflammatory. You could also just stay in your man cave. (lol) 

I just finished up my 12 weeks on the same Meds in Abbotts / Abbvies Turqouise II study but open label version for Cirrhotics. 

(actually there several threads on the Turquoise II and Sapphire II in the Trials section of the forum)

This trial has showed great promise as most participants have gone undetected fairly early within 4 or 5 weeks after starting the Meds, hope thats yours as well.  

Matt

 

 



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



Guru

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Hi and welcome George,

Good to have a Kiwi on board. The Southern Hemisphere needs more representation. Treatment makes a lot of us cranky so you're not alone.  There are quite a few Abbott trialists on the Forum and some on Sapphire.

Good luck. Cheers.

 



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Hi guys,

my first post.  I have been on the Abbott Sapphire 11 trial now for 6 weeks.

 I am finding that I get angry very quickly over minor issues 

my wife is very concerned that if I am on the placebo what will I be like on the 

real drugs.   Other than the short fuse, and the odd day where I can be very fatigued 

there are no other noticeable side effects.   

Hope this is the real drug as if it isn't I need some serious attitude adjustment. 

 

 



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