I was on 2 back to back trials for a total of 70 weeks of the non-peg variety of interferon.
Wow, I had no idea! You and Malcolm must have set some records. What a brave soul you are. I really hope you are able to get some easier and better tx soon, Jaded. This is just wrong.
Thx...I hope so too not for just me but all of us. I did a 4 month trial of Interferon only and as a non responder was eligible for a 1 year trail of Interferon and Ribaviran immediately after without delay. It wasn't really bravery...I wanted to clear the virus and would have done anything including another 70 weeks if it would have meant success...but nothing until now gave me hope and I just put it all out of my mind...no follow-ups...nothing after that. What is so frustrating is knowing that here is a simple cure out there that works but greed and profit is what is keeping it out of reach...but we all know this. Hopefully things will change soon before it's too late.
Isiscat2011 said
Jul 16, 2014
Jaded wrote:
I was on 2 back to back trials for a total of 70 weeks of the non-peg variety of interferon.
Wow, I had no idea! You and Malcolm must have set some records. What a brave soul you are. I really hope you are able to get some easier and better tx soon, Jaded. This is just wrong.
Jaded said
Jul 14, 2014
I should also mention that when I started the interferon tx 18 years ago things were different than today and the side effects I believe are somewhat less severe. I was on 2 back to back trials for a total of 70 weeks of the non-peg variety of interferon. Pegulated interferon did not exist then. I had to take it 3 times a week and the levels were higher than what is used today in a more regulated sustained dose over 48 weeks. So hopefully for those who use it today wouldn't have nearly the duration and severity of arthritis that I did. I used to burn out new percussion massagers literally every couple of months. So when I said it took me 15 years to resolve my arthritis that would not likely be the case for most people today (hopefully).
Jaded said
Jul 14, 2014
Tig56 wrote:
Hi Jaded,
I read in your recent post that you have been experiencing an ongoing problem with Interferon induced arthritis. I finished treatment last December and am now dealing with some increasing symptoms and problems related to the same thing. You mentioned finally getting some control over it. If I may, what have you found that has provided you any relief? I would appreciate your input on this greatly!
Tig
I tried everything and could not get relief until about 15 years later (so I'd say the last 3 years have been good...I am now 59 years old) when it resolved on its own for the most part. The best thing I found is deep massage which I would do by rolling on a hard medicine ball. But that only works for temporary relief. I also seemed to find that eliminating animal protein from my diet helped...but that might have been just coincidental as it was passing it's course. I now eat animal protein without problems. I had no idea nor could have imagined it was caused by the interferon so many years after having stopped taking it but actually read about this on this site. I feel for you and can only tell you to be strong it will eventually pass. Also...I have been a gym rat for the last 18 years...exercise and good diet is a major help.
-- Edited by Jaded on Monday 14th of July 2014 11:36:10 PM
Jaded said
Jul 14, 2014
mallani wrote:
Hi Jaded,
Your doctor is entitled to his opinion. Note that I was referring to the Victrelis triple, not the Olysio triple. I think Victrelis is probably a better antiprotease, and does not suffer from the Q80K problem of many 1a's.
I was given a rough SVR rate of 50- 70% when I started, which rose to 70-80% after my RVR. My IL28B status of CT, TT was regarded as good, but perhaps not quite as good as CC,TT.
In Australia, Victrelis is now completely funded by our PBS, so there is no patient cost and Insurance is not an issue. Some other countries now fund Victrelis and Incivek, and I only mention it as a possibility for those who are desperate to start treatment, but can't afford Sovaldi etc.
In BC Canada both teleprevir and boceprevir (victrelis) are fully funded with peg interferon and ribavirin...but I would have double the chance of success with Solvadi so that's what I'm waiting for unless it starts to look like I cannot wait any longer. Fortunately my endoscopy last month was free of varisis and concerns.
-- Edited by Jaded on Monday 14th of July 2014 11:34:47 PM
hrsetrdr said
Jul 14, 2014
Tig56 wrote:
Hi Jaded,
I read in your recent post that you have been experiencing an ongoing problem with Interferon induced arthritis. I finished treatment last December and am now dealing with some increasing symptoms and problems related to the same thing. You mentioned finally getting some control over it. If I may, what have you found that has provided you any relief? I would appreciate your input on this greatly!
Tig
Subscribed. I too would be interested.
Tig said
Jul 14, 2014
Hi Jaded,
I read in your recent post that you have been experiencing an ongoing problem with Interferon induced arthritis. I finished treatment last December and am now dealing with some increasing symptoms and problems related to the same thing. You mentioned finally getting some control over it. If I may, what have you found that has provided you any relief? I would appreciate your input on this greatly!
Tig
mallani said
Jul 14, 2014
Hi Jaded,
Your doctor is entitled to his opinion. Note that I was referring to the Victrelis triple, not the Olysio triple. I think Victrelis is probably a better antiprotease, and does not suffer from the Q80K problem of many 1a's.
I was given a rough SVR rate of 50- 70% when I started, which rose to 70-80% after my RVR. My IL28B status of CT, TT was regarded as good, but perhaps not quite as good as CC,TT.
In Australia, Victrelis is now completely funded by our PBS, so there is no patient cost and Insurance is not an issue. Some other countries now fund Victrelis and Incivek, and I only mention it as a possibility for those who are desperate to start treatment, but can't afford Sovaldi etc.
I am sorry to hear that, Jaded. But, I wouldn't be surprised to see Gilead, AbbVie, BMS, or another big pharma cutting a deal with Canada to deliver some all orals sooner rather than later.
It's not that they are not or won't be available...everything is and will be available. It's whether they are covered or not. Olysio/Simeprvir is covered in full...Sovaldi is available to anyone who can pay for it but not covered by govt or many private insurers. Simeprivir/Peg Interferon/Ribaviran treatment is covered but contrary to mallani's Dr's opinion my Dr. tells me it has about a 40% success rate with genotype 1 cirrhotics and 60% in those without cirrhosis so I'm not really interested having already tried Interferon/Ribaviran without success in a 4 +12 month trial 18 years ago. I have only recently gotten the arthritis it causes me under control. I only discovered a couple of months ago that it was the interferon that caused it and possibly my poor eye sight ( although I haven't gotten any younger in the last 18 years). Of course all the orals and drugs are and will be available in Canada...but these drugs don't work if you can't afford to buy them or don't have coverage for them. Where are you Jonas Salk? You are so needed now.
-- Edited by Jaded on Monday 14th of July 2014 10:22:30 AM
-- Edited by Jaded on Monday 14th of July 2014 10:23:55 AM
-- Edited by Jaded on Monday 14th of July 2014 10:24:45 AM
Isiscat2011 said
Jul 13, 2014
I am sorry to hear that, Jaded. But, I wouldn't be surprised to see Gilead, AbbVie, BMS, or another big pharma cutting a deal with Canada to deliver some all orals sooner rather than later.
Jaded said
Jul 13, 2014
Isiscat2011 wrote:
Well, Americans are notoriously egocentric, so the annoying woman was naturally only thinking about the US.
Jaded: Canadians may have access to the all orals too. We have at least one Canadian member, Barnacle, who is on the all oral combo of Sovaldi and Olysio. Here is a thread where he talks about how he got it: http://hepcfriends.activeboard.com/t57005942/happy-in-canada/
Also, if you search "Canada" here you will find more information about access in Canada.
Thx for the link. He is one of the tiniest of percentiles of the the lucky chosen few to have coverage for it. He is insured with the best of companies for that...Sun Life. Very few people here in Canada are that lucky...I'm not one of them. I will have to wait until all the bureaucratic hoops have been completed and then maybe if it becomes recommended on the Federal level that the provinces will cover it. That remains to be seen. To quote my Dr..." There is no 'special dispensation' available for Sovaldi at this time. There will be no avenues for provincial reimbursement until the national-level discussions (common drug review, and pan-canada pricing agreement talks) have been completed."
-- Edited by Jaded on Monday 14th of July 2014 04:24:54 AM
Isiscat2011 said
Jul 13, 2014
Tig56 wrote:
Darn US females! How dare you, lol!
When I saw the words "annoying US female" I thought he would be referring to Nancy Grace. Although, he could have been referring to me too. If the shoe fits. LOL
Tig said
Jul 13, 2014
Darn US females! How dare you, lol!
Tig
Isiscat2011 said
Jul 13, 2014
Well, Americans are notoriously egocentric, so the annoying woman was naturally only thinking about the US.
Jaded: Canadians may have access to the all orals too. We have at least one Canadian member, Barnacle, who is on the all oral combo of Sovaldi and Olysio. Here is a thread where he talks about how he got it: http://hepcfriends.activeboard.com/t57005942/happy-in-canada/
Also, if you search "Canada" here you will find more information about access in Canada.
mallani said
Jul 13, 2014
Hi Jaded,
I don't have the exact breakdown, but roughly 50/50 1a and 1b.
Jaded said
Jul 13, 2014
mallani wrote:
Hi all,
I just heard a video, where an annoying US female said '......we can finally say goodbye to Interferon forever' .
These are just some SVR figures, for those in countries who may have years to wait for the new DAA's.
Between Feb 2012 and Jul 2013, my doc and one of his partners treated 109 patients with the Victrelis triple. Almost half were F3 or more, and did 48 weeks, the others doing 28 weeks. Age range was 48 to 69 (me).
Pegasys (Peginterferon alpha-2a) was used as my doc prefers this, with Copegus ( Roche) as the Ribavirin.
All patients finished the course of treatment. My doc had done the previous Victrelis Trials in 2011-12, and used the 'Undetectable at week 12 ' rule. All were. A mild Ribavirin reduction was used in 2 patients, but the others stayed on the full dose of weight-based Riba for the treatment duration. One patient dropped their Hb to 50 (5 in the USA) and received two transfusions.
89 patients achieved SVR 24.(close to 82%). All patients with an RVR (Undet. at week 8) got their SVR.
Comment: These are fairly impressive figures. Little has been published about SVR rates for Victrelis or Incivek since the Trials. Although Merck provided the drugs for free, the cost of 28 weeks of this treatment today is ~$40,000. The cost varies widely from country to country. Treatment is no picnic, with most patients having significant anaemia. It may be worth trying this Rx and only continue if you have an RVR.
I don't have any Merck shares!
-- Edited by mallani on Monday 14th of July 2014 12:54:15 AM
What genotype were they? I'm 1a with early cirrhosis and my Dr only gives it a 40% chance of success for me so I'm waiting. BTW...I'm in Canada.
mallani said
Jul 13, 2014
Hi all,
I just heard a video, where an annoying US female said '......we can finally say goodbye to Interferon forever' .
These are just some SVR figures, for those in countries who may have years to wait for the new DAA's.
Between Feb 2012 and Jul 2013, my doc and one of his partners treated 109 patients with the Victrelis triple. Almost half were F3 or more, and did 48 weeks, the others doing 28 weeks. Age range was 48 to 69 (me).
Pegasys (Peginterferon alpha-2a) was used as my doc prefers this, with Copegus ( Roche) as the Ribavirin.
All patients finished the course of treatment. My doc had done the previous Victrelis Trials in 2011-12, and used the 'Undetectable at week 12 ' rule. All were. A mild Ribavirin reduction was used in 2 patients, but the others stayed on the full dose of weight-based Riba for the treatment duration. One patient dropped their Hb to 50 (5 in the USA) and received two transfusions.
89 patients achieved SVR 24.(close to 82%). All patients with an RVR (Undet. at week 8) got their SVR.
Comment: These are fairly impressive figures. Little has been published about SVR rates for Victrelis or Incivek since the Trials. Although Merck provided the drugs for free, the cost of 28 weeks of this treatment today is ~$40,000. The cost varies widely from country to country. Treatment is no picnic, with most patients having significant anaemia. It may be worth trying this Rx and only continue if you have an RVR.
I don't have any Merck shares!
-- Edited by mallani on Monday 14th of July 2014 12:54:15 AM
Thx...I hope so too not for just me but all of us. I did a 4 month trial of Interferon only and as a non responder was eligible for a 1 year trail of Interferon and Ribaviran immediately after without delay. It wasn't really bravery...I wanted to clear the virus and would have done anything including another 70 weeks if it would have meant success...but nothing until now gave me hope and I just put it all out of my mind...no follow-ups...nothing after that. What is so frustrating is knowing that here is a simple cure out there that works but greed and profit is what is keeping it out of reach...but we all know this. Hopefully things will change soon before it's too late.
Wow, I had no idea! You and Malcolm must have set some records. What a brave soul you are. I really hope you are able to get some easier and better tx soon, Jaded. This is just wrong.
I tried everything and could not get relief until about 15 years later (so I'd say the last 3 years have been good...I am now 59 years old) when it resolved on its own for the most part. The best thing I found is deep massage which I would do by rolling on a hard medicine ball. But that only works for temporary relief. I also seemed to find that eliminating animal protein from my diet helped...but that might have been just coincidental as it was passing it's course. I now eat animal protein without problems. I had no idea nor could have imagined it was caused by the interferon so many years after having stopped taking it but actually read about this on this site. I feel for you and can only tell you to be strong it will eventually pass. Also...I have been a gym rat for the last 18 years...exercise and good diet is a major help.
-- Edited by Jaded on Monday 14th of July 2014 11:36:10 PM
In BC Canada both teleprevir and boceprevir (victrelis) are fully funded with peg interferon and ribavirin...but I would have double the chance of success with Solvadi so that's what I'm waiting for unless it starts to look like I cannot wait any longer. Fortunately my endoscopy last month was free of varisis and concerns.
-- Edited by Jaded on Monday 14th of July 2014 11:34:47 PM
Subscribed. I too would be interested.
Hi Jaded,
I read in your recent post that you have been experiencing an ongoing problem with Interferon induced arthritis. I finished treatment last December and am now dealing with some increasing symptoms and problems related to the same thing. You mentioned finally getting some control over it. If I may, what have you found that has provided you any relief? I would appreciate your input on this greatly!
Tig
Hi Jaded,
Your doctor is entitled to his opinion. Note that I was referring to the Victrelis triple, not the Olysio triple. I think Victrelis is probably a better antiprotease, and does not suffer from the Q80K problem of many 1a's.
I was given a rough SVR rate of 50- 70% when I started, which rose to 70-80% after my RVR. My IL28B status of CT, TT was regarded as good, but perhaps not quite as good as CC,TT.
In Australia, Victrelis is now completely funded by our PBS, so there is no patient cost and Insurance is not an issue. Some other countries now fund Victrelis and Incivek, and I only mention it as a possibility for those who are desperate to start treatment, but can't afford Sovaldi etc.
news just today read this!!!!
http://www.fool.com/investing/general/2014/07/13/obamacares-surprising-hiv-drug-demand.aspx
It's not that they are not or won't be available...everything is and will be available. It's whether they are covered or not. Olysio/Simeprvir is covered in full...Sovaldi is available to anyone who can pay for it but not covered by govt or many private insurers. Simeprivir/Peg Interferon/Ribaviran treatment is covered but contrary to mallani's Dr's opinion my Dr. tells me it has about a 40% success rate with genotype 1 cirrhotics and 60% in those without cirrhosis so I'm not really interested having already tried Interferon/Ribaviran without success in a 4 +12 month trial 18 years ago. I have only recently gotten the arthritis it causes me under control. I only discovered a couple of months ago that it was the interferon that caused it and possibly my poor eye sight ( although I haven't gotten any younger in the last 18 years). Of course all the orals and drugs are and will be available in Canada...but these drugs don't work if you can't afford to buy them or don't have coverage for them. Where are you Jonas Salk? You are so needed now.
-- Edited by Jaded on Monday 14th of July 2014 10:22:30 AM
-- Edited by Jaded on Monday 14th of July 2014 10:23:55 AM
-- Edited by Jaded on Monday 14th of July 2014 10:24:45 AM
I am sorry to hear that, Jaded. But, I wouldn't be surprised to see Gilead, AbbVie, BMS, or another big pharma cutting a deal with Canada to deliver some all orals sooner rather than later.
Thx for the link. He is one of the tiniest of percentiles of the the lucky chosen few to have coverage for it. He is insured with the best of companies for that...Sun Life. Very few people here in Canada are that lucky...I'm not one of them. I will have to wait until all the bureaucratic hoops have been completed and then maybe if it becomes recommended on the Federal level that the provinces will cover it. That remains to be seen. To quote my Dr..." There is no 'special dispensation' available for Sovaldi at this time. There will be no avenues for provincial reimbursement until the national-level discussions (common drug review, and pan-canada pricing agreement talks) have been completed."
-- Edited by Jaded on Monday 14th of July 2014 04:24:54 AM
When I saw the words "annoying US female" I thought he would be referring to Nancy Grace. Although, he could have been referring to me too. If the shoe fits. LOL
Darn US females! How dare you, lol!
Tig
Well, Americans are notoriously egocentric, so the annoying woman was naturally only thinking about the US.
Jaded: Canadians may have access to the all orals too. We have at least one Canadian member, Barnacle, who is on the all oral combo of Sovaldi and Olysio. Here is a thread where he talks about how he got it: http://hepcfriends.activeboard.com/t57005942/happy-in-canada/
Also, if you search "Canada" here you will find more information about access in Canada.
Hi Jaded,
I don't have the exact breakdown, but roughly 50/50 1a and 1b.
What genotype were they? I'm 1a with early cirrhosis and my Dr only gives it a 40% chance of success for me so I'm waiting. BTW...I'm in Canada.
Hi all,
I just heard a video, where an annoying US female said '......we can finally say goodbye to Interferon forever' .
These are just some SVR figures, for those in countries who may have years to wait for the new DAA's.
Between Feb 2012 and Jul 2013, my doc and one of his partners treated 109 patients with the Victrelis triple. Almost half were F3 or more, and did 48 weeks, the others doing 28 weeks. Age range was 48 to 69 (me).
Pegasys (Peginterferon alpha-2a) was used as my doc prefers this, with Copegus ( Roche) as the Ribavirin.
All patients finished the course of treatment. My doc had done the previous Victrelis Trials in 2011-12, and used the 'Undetectable at week 12 ' rule. All were. A mild Ribavirin reduction was used in 2 patients, but the others stayed on the full dose of weight-based Riba for the treatment duration. One patient dropped their Hb to 50 (5 in the USA) and received two transfusions.
89 patients achieved SVR 24.(close to 82%). All patients with an RVR (Undet. at week 8) got their SVR.
Comment: These are fairly impressive figures. Little has been published about SVR rates for Victrelis or Incivek since the Trials. Although Merck provided the drugs for free, the cost of 28 weeks of this treatment today is ~$40,000. The cost varies widely from country to country. Treatment is no picnic, with most patients having significant anaemia. It may be worth trying this Rx and only continue if you have an RVR.
I don't have any Merck shares!
-- Edited by mallani on Monday 14th of July 2014 12:54:15 AM