Aahhh....the old wearing two hats challenge. Not easy to accomplish when one possesses only a single head.
I simply couldn't resist mentioning an additional consideration. That is if the good doctor indeed wears two hats, does he prefer the status and remuneration that is associated with the "TOP HAT" or the "BALL CAP"? I hope it's not a challenge at all!
Tig
Isiscat2011 said
Aug 21, 2014
mallani wrote:
Good, see Lawitz without his Gilead hat on.
Aahhh....the old wearing two hats challenge. Not easy to accomplish when one possesses only a single head.
Matt Chris said
Aug 21, 2014
Hey HR
I'm very upset to read of your 24 week outcome on S&L, I am 100% with you on your feeling about the cause or the reason why you have yet to achieve SVR.
I am sure of one thing, that Gilead is just as interested and likely have already have a hypothesis of why you have relapsed. I would press, insist and implore them in writing and phone. I think your strategy to talk to Dr. Lawitz is a good one, you may have to press him a little but after meeting him and consulting with him on my own situation he seems very caring and highly motivated to get solid answers. I have forgotten how far along in fibrosis / Cirrhotic you are. Has Gilead ever talked about Sofosbuvirs Plasma saturation levels / or how much of drug is making it in your blood.
Also I would ask Eric his opinion of using Ribavirin with your next treatment because that's what he recommended for me with 24 weeks of S&L.
The more I study about HCV treatments the more I see that it requires three phases of completion
Phase # 1 Clear HC virus /reach undetectable status from all blood circulating in body. Which will give you you early UND reading.
Phase # 2 Reach all parts of the LIVER / hepatocytes / Liver tissues and other organs that can store replication properties and inhibit all viral replication until it is no more.
Phase # 3 After all treatment drugs have been finished having your own body / immune system deal correctly with any residual weaken virus.
With those of that have had HCV for 30-40 or more years and have developed cirrhosis it takes a longer treatment to reach the areas of the liver that have been scarred with the current drugs that are being used.
Of course there is several variables in these phases that can alter the progression like developing RAVs or other drugs reactions during treatment.
The news of relapse is never easy to take, but RH you can take heart in the truth that scientists and the medical field is just starting to understand how these small molecules work in the body during treatment. So your future has not been written yet, there is a lot more to go.
matt
-- Edited by Matt Chris on Thursday 21st of August 2014 07:10:18 PM
mallani said
Aug 21, 2014
Hi HR,
Good, see Lawitz without his Gilead hat on. Ask specifically if RAV's were found, and why you have relapsed twice on a drug that supposedly doesn't cause resistant variants. Also ask him for his views on IL28B. If you're TT, it may help explain. Cheers.
Huey said
Aug 20, 2014
HR wrote:
Tig56 wrote:
Huey,
I can't find any documentation anywhere that indicates a placebo was used in any arm of the ION 3 trial.
Tig
It was an open label with no placebos. 3 arms
1. 12 week Sof/ldv
2. 8 week Sof/ldv
3. 8 week Sof/ldv/RIBA
ok I didn't know that!
HR said
Aug 20, 2014
Thanks guys for the responses.
Tig, they started me off on some "blood work" trial after I relapsed the first time but was taken out of the trial when I started dosing again. I've asked for the results or reasons why I relapsed and they wouldn't give them to me or said Gilead doesn't share that or it takes a long time to get those tests back. Whatever the case I didn't find anything out. I'm supposed to go back next week and give another blood sample and I'm sure they'll want to sign me up for another "blood work" trial. I will post more when we get to the bottom of it which we will.
Malcolm, I haven't gotten the IL28B test done but will get one. I am going to be on a mission to find out what caused this. I will probably set up an appointment with Dr Lawitz on his practice side and go from there. I think the trial side gives a lot less info.
Tig said
Aug 20, 2014
That was my understanding too. But I had to look after Huey mentioned it was a possibility. I'm sorry to hear you relapsed again HR. Such a disappointment I'm sure. Is Gilead going to perform any followup RAV testing to try and determine what happened?
Tig
HR said
Aug 20, 2014
Tig56 wrote:
Huey,
I can't find any documentation anywhere that indicates a placebo was used in any arm of the ION 3 trial.
Tig
It was an open label with no placebos. 3 arms
1. 12 week Sof/ldv
2. 8 week Sof/ldv
3. 8 week Sof/ldv/RIBA
Tig said
Aug 20, 2014
Huey,
I can't find any documentation that indicates a placebo was used in any arm of the ION trial.
Tig
mallani said
Aug 20, 2014
Hi HR,
Really sorry to hear you missed out again. What a bummer. For some reason, Sovaldi doesn't work for you- you get the Undet. then relapse when Sovaldi is withdrawn. I'd be looking elsewhere. AbbVie or Merck will have your magic poison, so take some time off and see what develops. I wouldn't use another Sovaldi combo. Have you had your IL28B done? It may be useful for the future.
Perhaps Sovaldi RAV's are not transient in some patients. Cheers.
HR said
Aug 20, 2014
Huey wrote:
Can I point out that This is a Trial, What if HR got a placebo, You never know with those trials, I think though that at the end they will retreat because they are expecting to.
Are you serious?
Huey said
Aug 20, 2014
Can I point out that This is a Trial, What if HR got a placebo, You never know with those trials, I think though that at the end they will retreat because they are expecting to.
Gracie said
Aug 20, 2014
I too am sorry to hear about your relapse. It sucks! The dreaded call, and the feeling like you've been kicked in the stomach by a horse.... It's been 4 months since I've got that call, and I'm feeling better Now about the situation. There are so many new treatments popping up, that it's just a matter of time before one of them works for us NONR... I've been exercising a LOT and that helps a lot. Makes me feel stronger... While I wait.... Patiently....
HR said
Aug 20, 2014
Im 1a and the next treatment will be a different regimen. I don't know what yet as it may be a year before I retreat.
Isiscat2011 said
Aug 20, 2014
I hope this isn't indelicate but I'm trying to understand why this would happen. You were tx with S/L for 12 weeks the first time and then for 24 weeks the second time. You were tx naive, non-cirrhotic, and I don't know if you are a 1a or a 1b.
It has to be attributable to RAVs. Is Sovaldi created RAVs the most likely explanation? I am wondering if they would have given you 24 weeks the first time if that would have made the difference. I'm thinking that we may need a 3rd DAA or a different (non-Sovaldi) combo all together for retreatments.
There needs to be some pre and post tx RAVs testing if we are to learn anything from these relapses. I'd bet the farm (if I owned a farm) that Gilead knows more about these RAVs than they are saying.
I'm interested to read Malcolm's opinion on this. Very disconcerting.
Isiscat2011 said
Aug 20, 2014
HR wrote:
I got the call nobody wants again today. Relapsed EOT 4. It sucks but the treatment was easy so I will just try again when the time is right. In the next few years I'm sure they will have all the answers to treat who with what. Take Care
Oh man! This just sucks all over the place! I am so sorry, HR. So much for the 100% clinical trial result.
Hang in there. Don't give up hope.
Misfis said
Aug 20, 2014
God! I'm so sorry to hear that, RH. I'd be so pissed if I was you. I congratulate you on your tenacity to just keep trying. Yes, I think they will have a lot more answers in the next year or two . Hang in there!
HR said
Aug 20, 2014
I got the call nobody wants again today. Relapsed EOT 4. It sucks but the treatment was easy so I will just try again when the time is right. In the next few years I'm sure they will have all the answers to treat who with what. Take Care
HR said
Jul 19, 2014
Misfis wrote:
I feel great, but I never really felt bad with the Hep c, even before treatment. I never would have found out I had it if my primary care doctor hadn't noticed that my liver enzymes were a little elevated. But I've stayed undetected, and I agreed to continue letting them monitor me for their own research purposes. Kind of a voluntary thing they ask you if you want to be a volunteer for. Gives me an excuse to go to San Francisco every 6 months and eat at one of my favorite restaurants down there.
Yeah, same here. Found Lund out because of alt/ast elevation. That's excellent news you are doing great. I keep up with Karen through PM's and she is doing great as well. Great talking to you.
Misfis said
Jul 19, 2014
I feel great, but I never really felt bad with the Hep c, even before treatment. I never would have found out I had it if my primary care doctor hadn't noticed that my liver enzymes were a little elevated. But I've stayed undetected, and I agreed to continue letting them monitor me for their own research purposes. Kind of a voluntary thing they ask you if you want to be a volunteer for. Gives me an excuse to go to San Francisco every 6 months and eat at one of my favorite restaurants down there.
HR said
Jul 19, 2014
Misfis wrote:
Hey HR! Good to hear from you. I was wondering when the treatment would be over. Good luck on these next months. Keep all of us posted on how it goes. It's good to know that the treatment had no crummy side effects for you.
Hey Misfis
How have you been doing? Feeling good all back to normal? I'm interested in knowing how you are doing now that's it's been about a year since you were on meds. Take care and it was great to hear from you.
Isis, Thanks for the hope, 100% sounds good to me:)
Misfis said
Jul 19, 2014
Hey HR! Good to hear from you. I was wondering when the treatment would be over. Good luck on these next months. Keep all of us posted on how it goes. It's good to know that the treatment had no crummy side effects for you.
Isiscat2011 said
Jul 19, 2014
Hi HR:
Congrats on finishing your tx.
There is always that lingering doubt that creeps up on us but when that doubt comes remember that in the clinical trials 24 weeks of S/L resulted in 100% SVR. I just love those odds for you.
Enjoy the rest of your summer. Come Fall you will be SVR.
HR said
Jul 19, 2014
Hey guys
I just completed my 24 weeks of Sofosbuvir/Ledipasvir. I was UND since week 4 just like I was on the previous 12 week trial. I guess we will see if the 24 week was long enough. The meds were really simple to deal with and I did all the same things I could do before treatment.
Now the hell begins.. I hope my body can fight the virus off to the 12 week mark.
Good luck to all of you.
sofi moore said
Apr 22, 2014
Thank you, Jill and thank you, Isiscat. I went to therapy but it was through school and she was super young and super sweet but not very good. My doctor at the clinic has referred me to someone else and I need to make that call. I wrote a short piece about the treatment and in it also told the story of my friend who died from it. She and I were the same age but she drank heavily and it exacerbated it and shut down her liver. So I definitely know there is a silver lining but on days when the pain in my joints is great, I do tend to get down. A friend of mine recently said to me "you're too young to be old" and she is right. But thank you both for your kind words. It's nice to just be heard.
Sofi
Isiscat2011 said
Apr 19, 2014
I meant PTSD. See, the fracking treatment made me dyslexic too! Oy Vey.
Isiscat2011 said
Apr 19, 2014
Hi Sofi:
I have read your story from the inception of your clinical trial until now and it really got to me. You have been through hell, both physically and mentally, and I'm sure you never thought this could happen on an all oral regime.
I question the ethics of placing an asymptomatic young woman, who has no evidence of liver damage, on drugs that are experimental--combined with a drug that has proven safety risks. Your anger is justified.
I went through a similar experience and it takes some time to get through it. I believe an experience such as this can cause PSTD; it is serious stuff. Add to that there are few people who can even remotely relate to what you are going through. I had numerous post-treatment problems but I didn't realize how much I had been impacted emotionally until I talked with a therapist. Within 5 minutes I was crying almost uncontrollably (and I'm not a big cryer most of the time). A box of kleenex later and I felt like a weight had been lifted.
In the end all we can do is make the best of whatever cards we are dealt. For me that meant moving forward by taking care of my health and focusing on the beautiful things in life that I had not always fully appreciated. I noticed that you are a writer. That ability can help you work through this and how much do you want to bet this experience improves your writing skills? There is always a silver lining, Sofi. Look for yours and you will find it.
Cinnamon Girl said
Apr 12, 2014
Hi Sofi, I`m really sorry things aren`t going well for you post treatment, and by the sounds of you must be in a lot of pain. We all think of Sofosbuvir as a wonder drug but we don`t yet know the full extent of the potential long term after effects. You went into this trial with optimism and hope and this certainly wasn`t what you were expecting, especially from an all oral combo.
Thank goodness anyway that you did clear the virus and achieved your SVR, and I do hope these problems can be resolved or improved with time and the right medication. You had a rough journey through your tx and it`s time you had a break!
Take care, and do keep in touch. Jill
sofi moore said
Apr 11, 2014
I am being sent to a rheumatologist because I probably have rheumatoid arthritis. All my health issues are because of the medicine and not just the ribavirin. My doctor says hypothyroidism and RA are common sides of sofosbuvir. Would have been nice to know but everyone called it the miracle cure, including the study nurse. My quality of life has declined since treatment. I was not sick or in any pain before treatment. Now I am an old woman at thirty six.
Karen said
Mar 2, 2014
Michele-
So happy for you...Really amazing time when we no longer identify ourselves with Hep C...
Keep it rolling RH...
16 days left before my final draw...sure seems like "forever"...
socalbeatnik said
Mar 2, 2014
Congrats Lil Eddie.....
I just finished watching Dallas Buyers Club and couldnt help but think of many peoples struggle with the FDA with their HepC issues as well. So glad to have won the fight, myself.
HR said
Mar 2, 2014
Feeling great, started week five on Friday.
Have a great day
Misfis said
Mar 2, 2014
Thanks RH, you must be a ways into your treatment at this point. Hope you're feeling well!
Misfis said
Mar 2, 2014
Congrats lil Eddie !!!!
HR said
Mar 2, 2014
Excellent news Misfis!! Congrats
Misfis said
Mar 2, 2014
My primary care doc says, "now you can say you have a history of hep c, instead of that you have hep c ".
Tig said
Feb 28, 2014
Congrats Eddie! I never thought of it that way Matt, "When I used to have Hep C". What a pleasant thought!
Tig
Matt Chris said
Feb 27, 2014
Hey Eddie
Congrats on the 24 weeks SVR status.
Now say the my favorite statement "When I used to have Hepatitis C"
matt
-- Edited by Matt Chris on Friday 28th of February 2014 06:00:35 AM
Karen said
Feb 27, 2014
Great news Eddie....dance, dance, dance!!!
Cinnamon Girl said
Feb 27, 2014
Excellent news, congrats Eddie! Also to Sofi, Carla and everyone who`s done so well, great to see so many wonderful results from this trial
Hi RH, all the best of luck to you this time around!
Thanks all of your for sharing your journey with us!
HR said
Feb 27, 2014
Congrats Eddie.. Great job Buddy
Lil Eddie said
Feb 27, 2014
I got my SVR24 results back. The nurse told me to start the "Happy Dance" because I had officially cleared the Virus!!!
Thanks to all of you for helping me get through the twists and turns of dealing with the Dragon!
Good luck and may God watch over all!
Thank you!
Matt Chris said
Feb 1, 2014
Hey RH
Way to go, great to hear your back on treatment. This time will be the ticket to SVR. 24 weeks will take care of all the extra needs that your body requires.
Come July and August you will be free and clean of HCV
matt
Misfis said
Jan 31, 2014
good to hear, RH, we'll all hope for the best for you!
HR said
Jan 31, 2014
Hey Guys,
I started treatment again today. Sofosbuvir /Ledipasvir for 24 weeks. So far , so good.
Just a little update. I hope everyone is hanging in there.
Take Care
HR said
Jan 22, 2014
Yep congrats to all the SVR 24's. Great job guys.
Looks like I will be about a year behind you. At least that's what the plan is.
we have Misfis and the 12 week group coming up on their 24 week. There is no doubt y'all will make it.
Stay in touch as I love hearing from all of you.
Take care
Matt Chris said
Jan 22, 2014
Congrats to Sofi, Rick and Carla
It's quite amazing that 8 weeks was enough time to clear the HCV and then keep it gone forever.
Remembering that 48 weeks of Interferon & Riba were and still is SOC for a lot of the world.
We have come a long way, I can imagine that in ten years it will be down to 1 or 2 shots and your done. The whole health care and latest cancer devolpments have been looking at the part the viruses play in disease with HIV and HCV leading the way into the investigation.
Hoping the best for your long term progress.
matt
Tig said
Jan 21, 2014
Hello to the ION-3 trial Warriors,
This message comes with pleasure and sadness alike. I'm thrilled for the successes you've all witnessed and am sorry to hear about the varied problems some of you are experiencing. Seems that none of us, regardless of treatment regimen or protocol have completely escaped all of these short or long term side effects. If I may ask, would you do us a favor? If you're up to it, would you take time to list the ongoing issues you're dealing with in the "Post Treatment" thread? I'd like to try and better document the various post treatment issues everyone is dealing with. We tend to keep each other up to date while we slog through treatment, but once finished people move on with their lives and many don't make it back to discuss the successes and long term side effects from the journey. This would be very informative for those that have gone through it and those preparing to. I'd appreciate your help and information. Good luck to all of you and thanks!
Tig
socalbeatnik said
Jan 21, 2014
Well no longer did I finish writing my last post when I call a call from my trial nurse. My 24 week results had come back and I am virus free as well. Yay Yay Yay...
They did ask me to join another group which just wants to follow up on me for three years and I told them I would.
Carla regarding my ankle issue I have found that I cant seem to stand or walk for any lengthy period of time as well or they will really start aching, which was never a problem for me in the past. I still have my hair thinning out as well but I have read the the Ribavarin can take months for the side effects to subdue. I still get some itching scalp but very s;light to what it once was a few months back.
Good Luck All
Rick
Ckncali said
Jan 21, 2014
Hi Everyone,
RH, Best of luck on your upcoming screening/trial. I am so glad Gilead is going to take care of you and give you a longer treatment. And it is great that you don't have to take RIBA.
Sofi, SVR24!!! That is great news. Sorry to hear about the thyroid issues. You got hit hard with the autoimmune problems from these drugs. Getting permanent damage to your thyroid really sucks. If you have to go on thyroid medication there is a difference between synthroid and desiccated thyroid. Synthroid did not work for me and only desiccated thyroid worked. Doctors don't like to prescribe desiccated thyroid so keep that in mind. There are choices when it comes to thyroid medication. Everyone seems to think there are no side effects from the Sof/led combo but I think we must not be the only people who experienced side effects. I now have ankle and knee joint issues that I think are from the trial drugs. Has anyone else experienced ankle or knee problems since the trial?
SoCal and Misfis, best of luck on achieving SVR24.
I had my 24 week blood draw last week. I am not worried because so many symptoms I used to have are still gone so I expect good results. Even though I have some after treatment issues the good definitely outweighs the bad and I am very thankful i got to do this trial.
I simply couldn't resist mentioning an additional consideration. That is if the good doctor indeed wears two hats, does he prefer the status and remuneration that is associated with the "TOP HAT" or the "BALL CAP"? I hope it's not a challenge at all!
Tig
Aahhh....the old wearing two hats challenge. Not easy to accomplish when one possesses only a single head.
Hey HR
I'm very upset to read of your 24 week outcome on S&L, I am 100% with you on your feeling about the cause or the reason why you have yet to achieve SVR.
I am sure of one thing, that Gilead is just as interested and likely have already have a hypothesis of why you have relapsed. I would press, insist and implore them in writing and phone. I think your strategy to talk to Dr. Lawitz is a good one, you may have to press him a little but after meeting him and consulting with him on my own situation he seems very caring and highly motivated to get solid answers. I have forgotten how far along in fibrosis / Cirrhotic you are. Has Gilead ever talked about Sofosbuvirs Plasma saturation levels / or how much of drug is making it in your blood.
Also I would ask Eric his opinion of using Ribavirin with your next treatment because that's what he recommended for me with 24 weeks of S&L.
The more I study about HCV treatments the more I see that it requires three phases of completion
Phase # 1 Clear HC virus /reach undetectable status from all blood circulating in body. Which will give you you early UND reading.
Phase # 2 Reach all parts of the LIVER / hepatocytes / Liver tissues and other organs that can store replication properties and inhibit all viral replication until it is no more.
Phase # 3 After all treatment drugs have been finished having your own body / immune system deal correctly with any residual weaken virus.
With those of that have had HCV for 30-40 or more years and have developed cirrhosis it takes a longer treatment to reach the areas of the liver that have been scarred with the current drugs that are being used.
Of course there is several variables in these phases that can alter the progression like developing RAVs or other drugs reactions during treatment.
The news of relapse is never easy to take, but RH you can take heart in the truth that scientists and the medical field is just starting to understand how these small molecules work in the body during treatment. So your future has not been written yet, there is a lot more to go.
matt
-- Edited by Matt Chris on Thursday 21st of August 2014 07:10:18 PM
Hi HR,
Good, see Lawitz without his Gilead hat on. Ask specifically if RAV's were found, and why you have relapsed twice on a drug that supposedly doesn't cause resistant variants. Also ask him for his views on IL28B. If you're TT, it may help explain. Cheers.
ok I didn't know that!
Thanks guys for the responses.
Tig, they started me off on some "blood work" trial after I relapsed the first time but was taken out of the trial when I started dosing again. I've asked for the results or reasons why I relapsed and they wouldn't give them to me or said Gilead doesn't share that or it takes a long time to get those tests back. Whatever the case I didn't find anything out. I'm supposed to go back next week and give another blood sample and I'm sure they'll want to sign me up for another "blood work" trial. I will post more when we get to the bottom of it which we will.
Malcolm, I haven't gotten the IL28B test done but will get one. I am going to be on a mission to find out what caused this. I will probably set up an appointment with Dr Lawitz on his practice side and go from there. I think the trial side gives a lot less info.
That was my understanding too. But I had to look after Huey mentioned it was a possibility. I'm sorry to hear you relapsed again HR. Such a disappointment I'm sure. Is Gilead going to perform any followup RAV testing to try and determine what happened?
Tig
It was an open label with no placebos. 3 arms
1. 12 week Sof/ldv
2. 8 week Sof/ldv
3. 8 week Sof/ldv/RIBA
Huey,
I can't find any documentation that indicates a placebo was used in any arm of the ION trial.
Tig
Hi HR,
Really sorry to hear you missed out again. What a bummer. For some reason, Sovaldi doesn't work for you- you get the Undet. then relapse when Sovaldi is withdrawn. I'd be looking elsewhere. AbbVie or Merck will have your magic poison, so take some time off and see what develops. I wouldn't use another Sovaldi combo. Have you had your IL28B done? It may be useful for the future.
Perhaps Sovaldi RAV's are not transient in some patients. Cheers.
Are you serious?
Can I point out that This is a Trial, What if HR got a placebo, You never know with those trials, I think though that at the end they will retreat because they are expecting to.
I too am sorry to hear about your relapse. It sucks! The dreaded call, and the feeling like you've been kicked in the stomach by a horse.... It's been 4 months since I've got that call, and I'm feeling better Now about the situation. There are so many new treatments popping up, that it's just a matter of time before one of them works for us NONR... I've been exercising a LOT and that helps a lot. Makes me feel stronger... While I wait.... Patiently....
Im 1a and the next treatment will be a different regimen. I don't know what yet as it may be a year before I retreat.
I hope this isn't indelicate but I'm trying to understand why this would happen. You were tx with S/L for 12 weeks the first time and then for 24 weeks the second time. You were tx naive, non-cirrhotic, and I don't know if you are a 1a or a 1b.
It has to be attributable to RAVs. Is Sovaldi created RAVs the most likely explanation? I am wondering if they would have given you 24 weeks the first time if that would have made the difference. I'm thinking that we may need a 3rd DAA or a different (non-Sovaldi) combo all together for retreatments.
There needs to be some pre and post tx RAVs testing if we are to learn anything from these relapses. I'd bet the farm (if I owned a farm) that Gilead knows more about these RAVs than they are saying.
I'm interested to read Malcolm's opinion on this. Very disconcerting.
Oh man! This just sucks all over the place! I am so sorry, HR. So much for the 100% clinical trial result.
Hang in there. Don't give up hope.
I got the call nobody wants again today. Relapsed EOT 4. It sucks but the treatment was easy so I will just try again when the time is right. In the next few years I'm sure they will have all the answers to treat who with what. Take Care
Yeah, same here. Found Lund out because of alt/ast elevation. That's excellent news you are doing great. I keep up with Karen through PM's and she is doing great as well. Great talking to you.
I feel great, but I never really felt bad with the Hep c, even before treatment. I never would have found out I had it if my primary care doctor hadn't noticed that my liver enzymes were a little elevated. But I've stayed undetected, and I agreed to continue letting them monitor me for their own research purposes. Kind of a voluntary thing they ask you if you want to be a volunteer for. Gives me an excuse to go to San Francisco every 6 months and eat at one of my favorite restaurants down there.
Hey Misfis
How have you been doing? Feeling good all back to normal? I'm interested in knowing how you are doing now that's it's been about a year since you were on meds. Take care and it was great to hear from you.
Isis, Thanks for the hope, 100% sounds good to me:)
Hey HR! Good to hear from you. I was wondering when the treatment would be over. Good luck on these next months. Keep all of us posted on how it goes. It's good to know that the treatment had no crummy side effects for you.
Hi HR:
Congrats on finishing your tx.
There is always that lingering doubt that creeps up on us but when that doubt comes remember that in the clinical trials 24 weeks of S/L resulted in 100% SVR. I just love those odds for you.
Enjoy the rest of your summer. Come Fall you will be SVR.
Hey guys
I just completed my 24 weeks of Sofosbuvir/Ledipasvir. I was UND since week 4 just like I was on the previous 12 week trial. I guess we will see if the 24 week was long enough. The meds were really simple to deal with and I did all the same things I could do before treatment.
Now the hell begins.. I hope my body can fight the virus off to the 12 week mark.
Good luck to all of you.
Thank you, Jill and thank you, Isiscat. I went to therapy but it was through school and she was super young and super sweet but not very good. My doctor at the clinic has referred me to someone else and I need to make that call. I wrote a short piece about the treatment and in it also told the story of my friend who died from it. She and I were the same age but she drank heavily and it exacerbated it and shut down her liver. So I definitely know there is a silver lining but on days when the pain in my joints is great, I do tend to get down. A friend of mine recently said to me "you're too young to be old" and she is right. But thank you both for your kind words. It's nice to just be heard.
Sofi
I meant PTSD. See, the fracking treatment made me dyslexic too! Oy Vey.
Hi Sofi:
I have read your story from the inception of your clinical trial until now and it really got to me. You have been through hell, both physically and mentally, and I'm sure you never thought this could happen on an all oral regime.
I question the ethics of placing an asymptomatic young woman, who has no evidence of liver damage, on drugs that are experimental--combined with a drug that has proven safety risks. Your anger is justified.
I went through a similar experience and it takes some time to get through it. I believe an experience such as this can cause PSTD; it is serious stuff. Add to that there are few people who can even remotely relate to what you are going through. I had numerous post-treatment problems but I didn't realize how much I had been impacted emotionally until I talked with a therapist. Within 5 minutes I was crying almost uncontrollably (and I'm not a big cryer most of the time). A box of kleenex later and I felt like a weight had been lifted.
In the end all we can do is make the best of whatever cards we are dealt. For me that meant moving forward by taking care of my health and focusing on the beautiful things in life that I had not always fully appreciated. I noticed that you are a writer. That ability can help you work through this and how much do you want to bet this experience improves your writing skills?
There is always a silver lining, Sofi. Look for yours and you will find it.
Hi Sofi, I`m really sorry things aren`t going well for you post treatment, and by the sounds of you must be in a lot of pain. We all think of Sofosbuvir as a wonder drug but we don`t yet know the full extent of the potential long term after effects. You went into this trial with optimism and hope and this certainly wasn`t what you were expecting, especially from an all oral combo.
Thank goodness anyway that you did clear the virus and achieved your SVR, and I do hope these problems can be resolved or improved with time and the right medication. You had a rough journey through your tx and it`s time you had a break!
Take care, and do keep in touch. Jill
I am being sent to a rheumatologist because I probably have rheumatoid arthritis. All my health issues are because of the medicine and not just the ribavirin. My doctor says hypothyroidism and RA are common sides of sofosbuvir. Would have been nice to know but everyone called it the miracle cure, including the study nurse. My quality of life has declined since treatment. I was not sick or in any pain before treatment. Now I am an old woman at thirty six.
Michele-
So happy for you...Really amazing time when we no longer identify ourselves with Hep C...
Keep it rolling RH...
16 days left before my final draw...sure seems like "forever"...
Congrats Lil Eddie.....
I just finished watching Dallas Buyers Club and couldnt help but think of many peoples struggle with the FDA with their HepC issues as well. So glad to have won the fight, myself.
Feeling great, started week five on Friday.
Have a great day
Excellent news Misfis!! Congrats
Congrats Eddie! I never thought of it that way Matt, "When I used to have Hep C". What a pleasant thought!
Tig
Hey Eddie
Congrats on the 24 weeks SVR status.
Now say the my favorite statement "When I used to have Hepatitis C"
matt
-- Edited by Matt Chris on Friday 28th of February 2014 06:00:35 AM
Great news Eddie....dance, dance, dance!!!
Excellent news, congrats Eddie! Also to Sofi, Carla and everyone who`s done so well, great to see so many wonderful results from this trial
Hi RH, all the best of luck to you this time around!
Thanks all of your for sharing your journey with us!
Congrats Eddie.. Great job Buddy
I got my SVR24 results back. The nurse told me to start the "Happy Dance" because I had officially cleared the Virus!!!
Thanks to all of you for helping me get through the twists and turns of dealing with the Dragon!
Good luck and may God watch over all!
Thank you!
Hey RH
Way to go, great to hear your back on treatment. This time will be the ticket to SVR. 24 weeks will take care of all the extra needs that your body requires.
Come July and August you will be free and clean of HCV
matt
good to hear, RH, we'll all hope for the best for you!
Hey Guys,
I started treatment again today. Sofosbuvir /Ledipasvir for 24 weeks. So far , so good.
Just a little update. I hope everyone is hanging in there.
Take Care
Yep congrats to all the SVR 24's. Great job guys.
Looks like I will be about a year behind you. At least that's what the plan is.
we have Misfis and the 12 week group coming up on their 24 week. There is no doubt y'all will make it.
Stay in touch as I love hearing from all of you.
Take care
Congrats to Sofi, Rick and Carla
It's quite amazing that 8 weeks was enough time to clear the HCV and then keep it gone forever.
Remembering that 48 weeks of Interferon & Riba were and still is SOC for a lot of the world.
We have come a long way, I can imagine that in ten years it will be down to 1 or 2 shots and your done. The whole health care and latest cancer devolpments have been looking at the part the viruses play in disease with HIV and HCV leading the way into the investigation.
Hoping the best for your long term progress.
matt
Hello to the ION-3 trial Warriors,
This message comes with pleasure and sadness alike. I'm thrilled for the successes you've all witnessed and am sorry to hear about the varied problems some of you are experiencing. Seems that none of us, regardless of treatment regimen or protocol have completely escaped all of these short or long term side effects. If I may ask, would you do us a favor? If you're up to it, would you take time to list the ongoing issues you're dealing with in the "Post Treatment" thread? I'd like to try and better document the various post treatment issues everyone is dealing with. We tend to keep each other up to date while we slog through treatment, but once finished people move on with their lives and many don't make it back to discuss the successes and long term side effects from the journey. This would be very informative for those that have gone through it and those preparing to. I'd appreciate your help and information. Good luck to all of you and thanks!
Tig
Well no longer did I finish writing my last post when I call a call from my trial nurse. My 24 week results had come back and I am virus free as well. Yay Yay Yay...
They did ask me to join another group which just wants to follow up on me for three years and I told them I would.
Carla regarding my ankle issue I have found that I cant seem to stand or walk for any lengthy period of time as well or they will really start aching, which was never a problem for me in the past. I still have my hair thinning out as well but I have read the the Ribavarin can take months for the side effects to subdue. I still get some itching scalp but very s;light to what it once was a few months back.
Good Luck All
Rick
Hi Everyone,
RH, Best of luck on your upcoming screening/trial. I am so glad Gilead is going to take care of you and give you a longer treatment. And it is great that you don't have to take RIBA.
Sofi, SVR24!!! That is great news. Sorry to hear about the thyroid issues. You got hit hard with the autoimmune problems from these drugs. Getting permanent damage to your thyroid really sucks. If you have to go on thyroid medication there is a difference between synthroid and desiccated thyroid. Synthroid did not work for me and only desiccated thyroid worked. Doctors don't like to prescribe desiccated thyroid so keep that in mind. There are choices when it comes to thyroid medication. Everyone seems to think there are no side effects from the Sof/led combo but I think we must not be the only people who experienced side effects. I now have ankle and knee joint issues that I think are from the trial drugs. Has anyone else experienced ankle or knee problems since the trial?
SoCal and Misfis, best of luck on achieving SVR24.
I had my 24 week blood draw last week. I am not worried because so many symptoms I used to have are still gone so I expect good results. Even though I have some after treatment issues the good definitely outweighs the bad and I am very thankful i got to do this trial.
Take care,
Carla