Aa
Harvoni Treatment for Cirrhotics Complications
Just returned from seeing my medical team about my new treatment with Harvoni. It's rather complicated so I am eager to hear what others have to say about the issues as I understand them.
Those cirrhotics who relapsed on S/O or were null responders are not part of the current approved group of people who can get treatment without going "off label". That is because, even though Gilead offers this to treatment naive and cirrhotic patients who failed under older treatments, those people who did not achieve SVR on S/O are in a new. much smaller class of people and there is currently no data to gauge the efficacy of the Harvoni treatment on them
My team is recommending that I do 24 weeks of Harvoni with Riba - with some additional caveats:
If I failed treatment at the end of next summer, I would be precluded from starting any new treatment for at least 6 months so this decision is really a one year commitment
Though Sovaldi seems to not create resistance issues, Harvoni may, so if treatment fails, I would never be offered Harvoni again (or Olysio for that matter)
There are new drugs on the horizon - especially the new AbbVie regimen that might be even better than Harvoni. Don't know the exact date that it will be available but I am sure someone here does
http://www.techtimes.com/articles/8523/20140615/fda-approves-abbvies-hepatitis-c-regimen-for-priority-review.htm
There Will be data in February for those in clinical trials who belong to this sub-group - those who relapsed on S/O and tried Harvoni - with/without Riba
Gilead has a backlog of orders for Harvoni and they can't make it fast enough to get it to patients. This could be a deciding factor, it seems. Kaiser will not begin treatment until one has a full 6 months of pills with your name on it ready and waiting for you to begin treatment
I have never taken Riba but remember reading posts from those who had a Terrible time with it and ended up in the ER with anemia or had Riba Rage and those who thought it was no big deal
Maybe I should just be patient and wait a few months?
I wanted to start Today but that is not possible. Does the fact that the Riba may give me a poorer quality of life during treatment supersede my wish to start right away?
It's easy for those who are not living with this illness to say, so, what's a couple of months? But if one's life is to shortened by the effects of living with Hep C, then 2 months is a big deal
Whew, can't wait to hear your responses. In any case, bottom line for those keeping score. I have been approved for treatment with Harvoni (one pill once a day) and Riba (5 capsules per day), my labs have all been ordered the first week of December, Gilead is trying to get enough Harvoni to fill my script for 6 months and there will be a final recommendation by the "team" in the next 2 weeks
Those cirrhotics who relapsed on S/O or were null responders are not part of the current approved group of people who can get treatment without going "off label". That is because, even though Gilead offers this to treatment naive and cirrhotic patients who failed under older treatments, those people who did not achieve SVR on S/O are in a new. much smaller class of people and there is currently no data to gauge the efficacy of the Harvoni treatment on them
My team is recommending that I do 24 weeks of Harvoni with Riba - with some additional caveats:
If I failed treatment at the end of next summer, I would be precluded from starting any new treatment for at least 6 months so this decision is really a one year commitment
Though Sovaldi seems to not create resistance issues, Harvoni may, so if treatment fails, I would never be offered Harvoni again (or Olysio for that matter)
There are new drugs on the horizon - especially the new AbbVie regimen that might be even better than Harvoni. Don't know the exact date that it will be available but I am sure someone here does
http://www.techtimes.com/articles/8523/20140615/fda-approves-abbvies-hepatitis-c-regimen-for-priority-review.htm
There Will be data in February for those in clinical trials who belong to this sub-group - those who relapsed on S/O and tried Harvoni - with/without Riba
Gilead has a backlog of orders for Harvoni and they can't make it fast enough to get it to patients. This could be a deciding factor, it seems. Kaiser will not begin treatment until one has a full 6 months of pills with your name on it ready and waiting for you to begin treatment
I have never taken Riba but remember reading posts from those who had a Terrible time with it and ended up in the ER with anemia or had Riba Rage and those who thought it was no big deal
Maybe I should just be patient and wait a few months?
I wanted to start Today but that is not possible. Does the fact that the Riba may give me a poorer quality of life during treatment supersede my wish to start right away?
It's easy for those who are not living with this illness to say, so, what's a couple of months? But if one's life is to shortened by the effects of living with Hep C, then 2 months is a big deal
Whew, can't wait to hear your responses. In any case, bottom line for those keeping score. I have been approved for treatment with Harvoni (one pill once a day) and Riba (5 capsules per day), my labs have all been ordered the first week of December, Gilead is trying to get enough Harvoni to fill my script for 6 months and there will be a final recommendation by the "team" in the next 2 weeks
Hi Almarte
This is an old thread. I think if you post a new question at the top, you won't have to wade through all of this to see an answer to the excellent question you have posed
Short answer, yes. Practically everyone who had a liver transplant back in the day but not so long ago, also had Hep C and treated to try to prevent infection of their new liver
Go to the top of the page and hit button marked Post A Question
This was a trip down memory lane for me, for sure, since so much has happened in just the last 6 months
The good news is that treatment just keeps getting better for people with all
stages of liver disease and there is rarely a good reason to not treat since getting rid of the virus once and for all will prevent further damage to the liver
Good luck to you.
This is an old thread. I think if you post a new question at the top, you won't have to wade through all of this to see an answer to the excellent question you have posed
Short answer, yes. Practically everyone who had a liver transplant back in the day but not so long ago, also had Hep C and treated to try to prevent infection of their new liver
Go to the top of the page and hit button marked Post A Question
This was a trip down memory lane for me, for sure, since so much has happened in just the last 6 months
The good news is that treatment just keeps getting better for people with all
stages of liver disease and there is rarely a good reason to not treat since getting rid of the virus once and for all will prevent further damage to the liver
Good luck to you.
Hello to all out there. I have a huge question to throw out to anyone who might have experience in this department. My husband almost died when his liver shut down, hepatic artery closed and tremendous internal bleeding. He was rushed from hospital in Spokane, Wa. to the University of Wash. med center in Seattle where they did an immediate TIPS proceedure. Then on waiting list for a transplant which he received in 2000. All good for one year and then the Hep C returned with a vengence. He has been in third stage liver disease with the new liver since 2003 as well as a battle that year with lymphoma. Lymphoma in remission ever since and not a worry and he appears to be relatively stable at third stage with his liver as though the Hep C is not actively doing serious further damage, although it is, of course, just a matter of time. Does anyone know of a patient WITH a liver transplant using any of the new drugs such as Harvoni and, if so, what the results have been as well as any bad effects., Would appreciate any new info or experience of someone with Hep C AFTER a liver transplant and any treatments they might be using against the Hep C. So much more available now than in 1998 when he first got sick as pretty much only interferon (sp) then and definitely NOT something to use on a critically ill person. Thank you for these forums - sometimes more confusing than not but alot of good information and experiences and our blessings to anyone who is fortunate enough to discover this illness before they are close to death. My husband was never sick, annual physicals showed no notable concern on liver counts, etc. then - bam. Contracted from blood transfusion 25 years earlier and if there had been any signs perhaps something could have been done but since so little was available and so little known about Hep C at the time, maybe not. Again, thank you for any information and/or experiences anyone may have. Andi
Wishing you a successful tratment and hope this is the cure for you! I will be following you and Lynn and everyone else on the journey!
hi Linda, I just wanted you to know I check in every few days to see how my other family on the forum are doing. Im so happy you're getting closer to beating this dragon, an just know that you an everyone here are always in my prayers an will be until each an every one of you are cured. Take care. Mary
"Riba stops mutation."
-------------------------------------------
Ribavirin does not stop mutation. Ribavirin is a mutagen. Ribavirin causes Mutagenesis.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2681971/
Mutagenesis is a process by which the genetic information of an organism is changed in a stable manner, resulting in a mutation.
-------------------------------------------
Ribavirin does not stop mutation. Ribavirin is a mutagen. Ribavirin causes Mutagenesis.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2681971/
Mutagenesis is a process by which the genetic information of an organism is changed in a stable manner, resulting in a mutation.
Nan, good luck to you and your husband. Hoping that treatment is easy for you both and SVR is a short 6 months away!
~ Linda
~ Linda
Up above I had given a link to a new study presented in Boston, I thought I would just cut and paste the pertinent part. This is brand new information that just came out Nov 11th.
Study GS-US-337-0121 (Late Breaker Oral #LB-6) evaluated 155 genotype 1 patients with compensated cirrhosis who had failed prior treatment with pegylated interferon (PegIFN)/RBV and subsequently PegIFN/RBV plus a protease inhibitor. In this study, patients were randomized (1:1) to receive Harvoni plus RBV for 12 weeks or Harvoni alone for 24 weeks. Ninety-six percent (n=74/77) of those receiving Harvoni plus RBV for 12 weeks and 97 percent (n=75/77) of those receiving Harvoni for 24 weeks achieved SVR12.
In a second study (Oral #235), 51 genotype 1 patients who previously failed SOF/PegIFN/RBV, SOF/RBV or a SOF placebo/PegIFN/RBV treatment regimen received Harvoni plus RBV for 12 weeks. Twenty-nine percent of study patients (n=15/51) had cirrhosis. Ninety-eight percent (n=50/51) achieved SVR12 following 12 weeks of treatment with Harvoni plus RBV.
In all of these studies, Harvoni was well tolerated and its safety profile was generally consistent with that observed in clinical trials of Harvoni. Adverse events included fatigue, headache, nausea and anemia, which was more common among patients taking RBV. Grade 3/4 laboratory abnormalities were infrequent and included decreases in hemoglobin, which is consistent with RBV-associated anemia.
The safety and efficacy of Harvoni have not been established for the investigational uses described above.
- See more at: http://www.gilead.com/news/press-releases/2014/11/gilead-announces-harvoni-study-results-in-chronic-hepatitis-c-patients-with-advanced-liver-disease-and-those-who-failed-prior-treatment#sthash.zrQbsRVK.dpuf
Study GS-US-337-0121 (Late Breaker Oral #LB-6) evaluated 155 genotype 1 patients with compensated cirrhosis who had failed prior treatment with pegylated interferon (PegIFN)/RBV and subsequently PegIFN/RBV plus a protease inhibitor. In this study, patients were randomized (1:1) to receive Harvoni plus RBV for 12 weeks or Harvoni alone for 24 weeks. Ninety-six percent (n=74/77) of those receiving Harvoni plus RBV for 12 weeks and 97 percent (n=75/77) of those receiving Harvoni for 24 weeks achieved SVR12.
In a second study (Oral #235), 51 genotype 1 patients who previously failed SOF/PegIFN/RBV, SOF/RBV or a SOF placebo/PegIFN/RBV treatment regimen received Harvoni plus RBV for 12 weeks. Twenty-nine percent of study patients (n=15/51) had cirrhosis. Ninety-eight percent (n=50/51) achieved SVR12 following 12 weeks of treatment with Harvoni plus RBV.
In all of these studies, Harvoni was well tolerated and its safety profile was generally consistent with that observed in clinical trials of Harvoni. Adverse events included fatigue, headache, nausea and anemia, which was more common among patients taking RBV. Grade 3/4 laboratory abnormalities were infrequent and included decreases in hemoglobin, which is consistent with RBV-associated anemia.
The safety and efficacy of Harvoni have not been established for the investigational uses described above.
- See more at: http://www.gilead.com/news/press-releases/2014/11/gilead-announces-harvoni-study-results-in-chronic-hepatitis-c-patients-with-advanced-liver-disease-and-those-who-failed-prior-treatment#sthash.zrQbsRVK.dpuf
Hi I think that it is called Riba Rage because it sounds better than Riba Irritability.
I was iritable the first time I did a 48 week tx of Interferon, Riba and a polymerase inhibitor.
The second time I did the Incivek, Riba and Peg, it was weight based so I only had to take 800 mg a month of the Riba and 135 of the Interferon but the Incivek was a real game changer for me. I didn't relapse like the first time and I am grateful to be cured.
I think you should do what ever your doctor is recommending. It is almost funny, when I treated I thought everyone said it was the interferon that gave such a bad reaction, maybe it was a bit of both.
I don't really know.
I wish you and everyone else doing the tx the very best
Dee
I was iritable the first time I did a 48 week tx of Interferon, Riba and a polymerase inhibitor.
The second time I did the Incivek, Riba and Peg, it was weight based so I only had to take 800 mg a month of the Riba and 135 of the Interferon but the Incivek was a real game changer for me. I didn't relapse like the first time and I am grateful to be cured.
I think you should do what ever your doctor is recommending. It is almost funny, when I treated I thought everyone said it was the interferon that gave such a bad reaction, maybe it was a bit of both.
I don't really know.
I wish you and everyone else doing the tx the very best
Dee
You have the right attitude. Thankfully, so does my husband. I don't wish this on my worst enemy. Keep up the good fight. Praying that you reach SVR12.
Best wishes,
Nan
Best wishes,
Nan
I don't know about everyone else, but I would do anything to get rid of this monster. I am now in the waiting game after s/o. My head is clear and I feel much better than I have in years. Hopefully, that is a good sign. Either way, I said I would not, but I will do it again. I have cirrhosis and all the ugliness that goes with it, HE, splenomegaly, neuropathy, varices and am at a transplant center now. Whatever I have to do I will.
I am excited for you!
I know this treatment will finally rid you of this monstrous virus. Here is a quote from Norbert Bischofberger, PhD, Executive Vice President of Research and Development and Chief Scientific Officer, Gilead Sciences (after recent Liver Meeting, 2014)
"Chronic hepatitis C patients with advanced liver disease are among the most difficult to cure and traditionally have had limited or no treatment options. The data presented this week demonstrate that Harvoni provides high cure rates for patients with advanced liver disease, as well as for those who failed prior treatment with other antivirals, including sofosbuvir-based regimens."
Read more about the data presented here:
hepatitiscresearchandnewsupdates.blogspot.com/2014/11/gilead-announces-harvoni-study-results.html
My husband is seeing his doctor on Friday. If you recall he is a post liver transplant patient with severe recurrent Hep C and now has symptoms of decompensated cirrhosis again. He suffered through 6 months of Sovaldi and Ribavirin with ongoing bouts of HE throughout treatment. Based on what I learned in the webinar presented from the Liver Meeting on November 9, 2014, the trial data showed of those post transplant patients who were treated with Harvoni + Ribavirin for 12 weeks (with CPT B) 85% achieved SVR12 results and of those who treated 24 weeks 83% achieved SVR12. So basically there was no difference between treating 12 or 24 weeks.
Needless to say, we are not thrilled at the prospect that he will need to treat with Ribavirin again. We'll see what his doctor has to say. Given his prior treatment failure, I expect him to have to treat for 24 weeks again.
I wish you the very best results with this new treatment. I think your doctors are right to treat you for 24 weeks given your treatment history.
Nan
I know this treatment will finally rid you of this monstrous virus. Here is a quote from Norbert Bischofberger, PhD, Executive Vice President of Research and Development and Chief Scientific Officer, Gilead Sciences (after recent Liver Meeting, 2014)
"Chronic hepatitis C patients with advanced liver disease are among the most difficult to cure and traditionally have had limited or no treatment options. The data presented this week demonstrate that Harvoni provides high cure rates for patients with advanced liver disease, as well as for those who failed prior treatment with other antivirals, including sofosbuvir-based regimens."
Read more about the data presented here:
hepatitiscresearchandnewsupdates.blogspot.com/2014/11/gilead-announces-harvoni-study-results.html
My husband is seeing his doctor on Friday. If you recall he is a post liver transplant patient with severe recurrent Hep C and now has symptoms of decompensated cirrhosis again. He suffered through 6 months of Sovaldi and Ribavirin with ongoing bouts of HE throughout treatment. Based on what I learned in the webinar presented from the Liver Meeting on November 9, 2014, the trial data showed of those post transplant patients who were treated with Harvoni + Ribavirin for 12 weeks (with CPT B) 85% achieved SVR12 results and of those who treated 24 weeks 83% achieved SVR12. So basically there was no difference between treating 12 or 24 weeks.
Needless to say, we are not thrilled at the prospect that he will need to treat with Ribavirin again. We'll see what his doctor has to say. Given his prior treatment failure, I expect him to have to treat for 24 weeks again.
I wish you the very best results with this new treatment. I think your doctors are right to treat you for 24 weeks given your treatment history.
Nan
Just thinking out loud here. My guess would be the reason adding Riba is not on the prescribing information sheet is because when it was submitted to the FDA for approval these latest facts were not complete. Therefor they can only include what was given to the FDA. This is just one reason why as patients it is important to go to well informed Hepatologists if possible. They keep up on all these things as with other doctors they just go by the label.
hepcandme, yes you are being treated by one of the best and most informed doctors out there. Best to you.
hepcandme, yes you are being treated by one of the best and most informed doctors out there. Best to you.
And luck to you too Lynn
I certainly wouldn't relish another show down with your insurance company
Let us know how your treatment goes - I don't think I will start for at least a few more weeks
~ Linda
I certainly wouldn't relish another show down with your insurance company
Let us know how your treatment goes - I don't think I will start for at least a few more weeks
~ Linda
Hi
Ribavirin is not on the prescribing information sheet so that does make it off label just as Sovaldi and Olusio's information sheets did not call out the other med. if you look at Olysio's sheet now it has been changed to include using with Sovaldi the FDA approved that use on 11/5 so Sol/Oly is no longer considered off label.
But if that is what your doctor feels is best and your insurance is ok I would go for it.
I just went 10 rounds with Express Scripts and am not up for another fight and anyway my doctor has not suggested Harvoni with Ribavirin.
But yes I have the bottle of Harvoni in my cabinet and am starting this Thursday for 24 weeks or 168 days should be done in early May.
Good luck on treatment
Lynn
Ribavirin is not on the prescribing information sheet so that does make it off label just as Sovaldi and Olusio's information sheets did not call out the other med. if you look at Olysio's sheet now it has been changed to include using with Sovaldi the FDA approved that use on 11/5 so Sol/Oly is no longer considered off label.
But if that is what your doctor feels is best and your insurance is ok I would go for it.
I just went 10 rounds with Express Scripts and am not up for another fight and anyway my doctor has not suggested Harvoni with Ribavirin.
But yes I have the bottle of Harvoni in my cabinet and am starting this Thursday for 24 weeks or 168 days should be done in early May.
Good luck on treatment
Lynn
Thanks Kim
Yes, I want to start treatment right away and if the Riba gives me an extra edge, then, great!
I am concerned about depression and rage (doesn't anyone ever call it irritability? Rage is such a strong word!)
I had a serious bout with depression but that was 25 years ago and I had a great shrink and took all the usual anti-depressants and then, suddenly, I was fine and I have never experienced depression again
The thing that always worries me is that I won't be able to work because I really enjoy what I do and laying around in bed for days on end feeling miserable sounds just awful.
Still, I am grateful that we're not even discussing Interferon because I would not take that. I just wouldn't. Killed a friend of mine 2 years ago
So, I'm just going to suck it up and take the Riba. It's encouraging that some people didn't seem to have such a hard time with it and I'm sorry that you did
I would say, for the most part, my treatment with S/O was completely bearable.
Funny how, when they review the side effects for Harvoni, it's fatigue, headaches, insomnia, dry mouth. I said, oh, you mean the usual?
Still haven't had my little "talk" about the Riba though
Yes, I want to start treatment right away and if the Riba gives me an extra edge, then, great!
I am concerned about depression and rage (doesn't anyone ever call it irritability? Rage is such a strong word!)
I had a serious bout with depression but that was 25 years ago and I had a great shrink and took all the usual anti-depressants and then, suddenly, I was fine and I have never experienced depression again
The thing that always worries me is that I won't be able to work because I really enjoy what I do and laying around in bed for days on end feeling miserable sounds just awful.
Still, I am grateful that we're not even discussing Interferon because I would not take that. I just wouldn't. Killed a friend of mine 2 years ago
So, I'm just going to suck it up and take the Riba. It's encouraging that some people didn't seem to have such a hard time with it and I'm sorry that you did
I would say, for the most part, my treatment with S/O was completely bearable.
Funny how, when they review the side effects for Harvoni, it's fatigue, headaches, insomnia, dry mouth. I said, oh, you mean the usual?
Still haven't had my little "talk" about the Riba though
Bottom line Linda is do you feel comfortable with the added Riba? Will tell you what I would do, but I am somewhat of a risk taker and at times it wasn't always the best strategy.
I would take this Harvoni/Riba combo in a flash. The waiting for me personally would be unbearable. As I'm supposedly early cirrhotic, becoming decompensated would be a big concern. Kinda both in the same boat.
As a geno 2, my Tx was Riba/Sovaldi for 12 weeks. I do believe from what you've said that you would be taking 1,000 mgs of Riba. I'm 110 lbs and 5'3 and was given 1,200 mgs. The Riba is weight based, and that was alot for my small frame. When I questioned my Dr about the high dosage, they commented that the added 200 mgs would knock the virus right out. They were accurate as I was UND at 2 weeks and have remained so since Jan 15 of this year.
Not going to lie, as it was a little tuff. But would not hesitate for 1 second if I had to do it again. With Riba I was a hot mess emotionally, but other then that fatigue was my only complaint. Didn't get the rashes and nausea or the other issues the Olysio folks suffered. Wish I had asked for an antidepressant, and then I would have been fine. Never had taken them before and had no idea what depression and rage felt like.
So all that being said, I would go for it if it were me. I do believe as everyone else has pointed out, the interferon and Riba sounded brutal. I do think the Riba alone, with 1,000 mgs instead of 1,200 would be worth the the payoff.
As far as Hmg, the lowest mine went was 10.3. Very doable.
I'm super excited for you regardless of which way you go. In the end I just want you to be free of this devastating illness.
Take care
......Kim
I would take this Harvoni/Riba combo in a flash. The waiting for me personally would be unbearable. As I'm supposedly early cirrhotic, becoming decompensated would be a big concern. Kinda both in the same boat.
As a geno 2, my Tx was Riba/Sovaldi for 12 weeks. I do believe from what you've said that you would be taking 1,000 mgs of Riba. I'm 110 lbs and 5'3 and was given 1,200 mgs. The Riba is weight based, and that was alot for my small frame. When I questioned my Dr about the high dosage, they commented that the added 200 mgs would knock the virus right out. They were accurate as I was UND at 2 weeks and have remained so since Jan 15 of this year.
Not going to lie, as it was a little tuff. But would not hesitate for 1 second if I had to do it again. With Riba I was a hot mess emotionally, but other then that fatigue was my only complaint. Didn't get the rashes and nausea or the other issues the Olysio folks suffered. Wish I had asked for an antidepressant, and then I would have been fine. Never had taken them before and had no idea what depression and rage felt like.
So all that being said, I would go for it if it were me. I do believe as everyone else has pointed out, the interferon and Riba sounded brutal. I do think the Riba alone, with 1,000 mgs instead of 1,200 would be worth the the payoff.
As far as Hmg, the lowest mine went was 10.3. Very doable.
I'm super excited for you regardless of which way you go. In the end I just want you to be free of this devastating illness.
Take care
......Kim
You mean, adding the Riba makes it off label? Or failing S/O makes it off label?
You're still starting the Harvoni, right?
See, haven't even begun treatment and I'm all confused
~ Linda
You're still starting the Harvoni, right?
See, haven't even begun treatment and I'm all confused
~ Linda
I spoke with Express Scripts. For them it would be off label and would require another approval and appeal.
Sigh just not up to it again I will just hope I fall in the correct data point after 24 weeks of Harvoni. Per the ION 2 trial the group for previous non responders with cirrhosis (all 22 of them) made SVR for 100% so I hope tat stat holds
Lynn
Sigh just not up to it again I will just hope I fall in the correct data point after 24 weeks of Harvoni. Per the ION 2 trial the group for previous non responders with cirrhosis (all 22 of them) made SVR for 100% so I hope tat stat holds
Lynn
Riba stops mutation. For those who have been treated previously, adding riba to S/O or Harvoni would make sense.
Thanks Marty
I'm pretty certain that I am going to do the Harvoni and Riba. As Jules put it:
"I've been reading up on this and I guess I am in the Harvoni + Riba camp for 24 weeks. And I really love the 100% SVR #."
Can't really argue with those results - even though the sample pool in the study may have been small.
For those who are hard to treat, a few percentage points makes a Huge difference - if you're a gambler, odds of 84% or even 96% sound solid but for us, the sound of 100% SVR is like hearing the word "undetected" for the first time
I'm pretty certain that I am going to do the Harvoni and Riba. As Jules put it:
"I've been reading up on this and I guess I am in the Harvoni + Riba camp for 24 weeks. And I really love the 100% SVR #."
Can't really argue with those results - even though the sample pool in the study may have been small.
For those who are hard to treat, a few percentage points makes a Huge difference - if you're a gambler, odds of 84% or even 96% sound solid but for us, the sound of 100% SVR is like hearing the word "undetected" for the first time
I completed 24 weeks of Sovaldi/Olysio + Riba earlier this month and had virtually no sides from the Riba. My Hgb gradually dropped from a 16.2 baseline to a lowest of 13.2. For me personally (1a, cirrhosis) it was the addition of interferon to Ribavirin that exacerbated the anemia.
Previous 48 week treatment with Peg/Riba without rescue meds my Hgb dropped rapidly into the 11's and stayed there.
Previous 48 week treatment with Peg/Riba + Victrelis my Hgb stayed in the 9's throughout most of tx while taking 60k units of Procrit weekly.
When I began this latest tx in May I expected to become as anemic and miserable as in the past but was pleasantly surprised. If your team recommends Riba, go for it.
As others have said, cirrhotic's may benefit from 24 weeks of either Sovaldi containing combo. Will know how this pans out around February 4th.
Best wishes to you and Lynn,
Marty
Previous 48 week treatment with Peg/Riba without rescue meds my Hgb dropped rapidly into the 11's and stayed there.
Previous 48 week treatment with Peg/Riba + Victrelis my Hgb stayed in the 9's throughout most of tx while taking 60k units of Procrit weekly.
When I began this latest tx in May I expected to become as anemic and miserable as in the past but was pleasantly surprised. If your team recommends Riba, go for it.
As others have said, cirrhotic's may benefit from 24 weeks of either Sovaldi containing combo. Will know how this pans out around February 4th.
Best wishes to you and Lynn,
Marty
Like Susan400, I take my riba 3 morning, also with food, and 3 night (12 hrs later) PER MY DOCTOR'S instruction. It never occurred to me that anyone was taking them any differently. I did/do have the anemia as I have mentioned on other threads, but it came back up from 8.6 or 8 to 9, then to 9.6. Last report was 9.5. I had the fatigue from the meds and the anemia, not as bad now, but still there. I also, like Susan had the emotionality, mostly tears, in response to things I never cry about, poignant, or sad. So I made it a point to stay away from those, books, shows, movies, etc. My husband finds funny or happy things on facebook or youtube to make me laugh each day.
I also would not be afraid to do the Riba again. I am on the 24 week course, and don't finish til Dec 1st, so don't know how this will go - I am Gt 3, have all three of the negatives WM mentioned, but am eating so much better, exercising when I can, being very careful to take my pills, praying a lot, keeping a good attitude and hoping for SVR. If not, then I'll try again.
Back to the point: I think the Riba is a very useful tool, especially since prior tx. More, I think the 24 weeks is important. I know they are trying to shorten treatment, reduce the meds per day, but first, I wish they would concentrate on getting 100% for each and every genotype.
Windy as usual. Sorry. Good luck on whatever you and your doctors come up with. I pray this is thetimefor you! Pat
I also would not be afraid to do the Riba again. I am on the 24 week course, and don't finish til Dec 1st, so don't know how this will go - I am Gt 3, have all three of the negatives WM mentioned, but am eating so much better, exercising when I can, being very careful to take my pills, praying a lot, keeping a good attitude and hoping for SVR. If not, then I'll try again.
Back to the point: I think the Riba is a very useful tool, especially since prior tx. More, I think the 24 weeks is important. I know they are trying to shorten treatment, reduce the meds per day, but first, I wish they would concentrate on getting 100% for each and every genotype.
Windy as usual. Sorry. Good luck on whatever you and your doctors come up with. I pray this is thetimefor you! Pat
For me, the way I preferred to take the Riba was 3 pills in the AM with food and 12 hrs later 2 pills w/food. Riba, I've heard is absorbed better if you eat it with a little bit of a more 'fatty' type of food, as opposed to eating with like an apple. I did the Riba on 10 of my 11 treatments, so I've had alot of experience with it. It seems to make my sleep worse if I take more of the pills late in the day, so I liked to take the 3 in the morning dose. I didn't get anemic on every treatment. Strangely, the anemia only seemed to hit me bad in the early treatment regimens. I do have to say that my worse side effect on the Riba was my mood/mental state. If you keep that in perspective (that it's just the Riba making me crazy..), than it helps to deal with it more. Susan400
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