Aa
Sovaldi & Ribovarin
My first post: Hello good people. This is more like a commentary than it is a question. Any comments anyone can give are much appreciated.
I have had Hepatitis C for over 35 yrs. I probably contracted it from either a blood transfusion or a tattoo, both of which I had in 1978.
I have genotype 3a, stage 4. I had a recent hospital stay & blood transfusion due to extreme anemia. My doctor says my spleen is inflamed to 3 times normal size as it is trying to do the job my liver cannot do.
My Gastroentrologist has prescribed a 6 month regimen of Sovaldi (400 mg once daily) & Ribovarin (600 mg. twice daily).
The amount of Ribovarin prescribed seems excessive to me (3 ea 200 mg tablets in the morning & 3 ea in the evening). Does anyone else think so? 1,200 mg a day of Ribovarin alone! I don't know how Sovaldi affects me but am no stranger to Ribovarin.
I took Interferon & Ribovarin over ten years ago. My levels became undetectable after 6 months. It's hard to remember how I felt, just that it was not pleasant. I'm sure I did not take 1,200 mg of Ribovarin daily.
The Hepatitis has come back and with a vengeance. I'm tired & have muscular and joint pain all the time. I haven't started the Sovaldi & Ribovarin cocktail yet. I'm afraid to take that much Ribovarin for such an extended period of time.
Any comments from anyone are truly welcome and, again, much appreciated.
Many thanks, kat
I have had Hepatitis C for over 35 yrs. I probably contracted it from either a blood transfusion or a tattoo, both of which I had in 1978.
I have genotype 3a, stage 4. I had a recent hospital stay & blood transfusion due to extreme anemia. My doctor says my spleen is inflamed to 3 times normal size as it is trying to do the job my liver cannot do.
My Gastroentrologist has prescribed a 6 month regimen of Sovaldi (400 mg once daily) & Ribovarin (600 mg. twice daily).
The amount of Ribovarin prescribed seems excessive to me (3 ea 200 mg tablets in the morning & 3 ea in the evening). Does anyone else think so? 1,200 mg a day of Ribovarin alone! I don't know how Sovaldi affects me but am no stranger to Ribovarin.
I took Interferon & Ribovarin over ten years ago. My levels became undetectable after 6 months. It's hard to remember how I felt, just that it was not pleasant. I'm sure I did not take 1,200 mg of Ribovarin daily.
The Hepatitis has come back and with a vengeance. I'm tired & have muscular and joint pain all the time. I haven't started the Sovaldi & Ribovarin cocktail yet. I'm afraid to take that much Ribovarin for such an extended period of time.
Any comments from anyone are truly welcome and, again, much appreciated.
Many thanks, kat
Normally I would post here ...but Kat does have cirrhosis and ethically I think it would be wrong to encourage someone with cirrhosis to treat with an obsolete, ineffective treatment that is not approved by the AASLD/IDSA Hepatitis C Guidelines that has little chance of cure when there are better treatments that are now available.
According to her post, Kat has Genoptype 3 HCV with Cirrhosis and is Treatment Experienced having treated with “Interferon & Ribovarin over ten years ago”.
Her gastro doctor is recommending that she treat for 24 weeks with Sofobuvir and Ribavirin.
Sofosbuvir and Ribavirin is NOT a recommended treatment for someone like Kat according to the AASLD/IDSA HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C treatment guidelines.
To quote from a Clinical Care Options paper titled “Evolving HCV Management in Harder-to-Treat Populations” regarding treatment of genotype 3 patients “… “SVR rates with sofosbuvir and ribavirin in genotype 3 are reduced when compared with other genotypes, particularly for treatment-experienced cirrhotic patients for whom the 24-week sofosbuvir plus ribavirin regimen has led to an SVR12 rate of 62% in clinical trials.”
Is it any wonder why this treatment is not recommended for someone like Kat?
Do we really want to recommend an ineffective, out-dated, 6 month treatment to someone with cirrhosis who has already been hospitalized with a SVR rate of only 62% when more effective treatments are now available for people like her?
In my opinion she and her doctor should follow the AASLD/IDSA treatment guidelines to give her the best chance of achieving SVR using the latest available recommended treatments.
Both of which have higher SVR rates than Sofosbuvir and Ribavirin alone!
The two AASLD/IDSA recommended treatments for someone like Kat are….
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Recommended regimens for patients with HCV genotype 3 infection with cirrhosis, in whom prior treatment with PEG-IFN and RBV has failed.
Daily daclatasvir (60 mg) and sofosbuvir (400 mg) for 24 weeks with weight based RBV is recommended for patients with cirrhosis and HCV genotype 3 infection, in whom prior treatment with PEG-IFN and RBV has failed and who are IFN ineligible.
Rating: Class IIa, Level C
Daily sofosbuvir (400 mg) and weight-based RBV plus weekly PEG-IFN for 12 weeks is recommended for patients with HCV genotype 3 infection, in whom prior treatment with PEG-IFN and RBV has failed and who are IFN eligible.
Rating: Class I, Level A
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I would imagine that the first treatment, Daclatasvir, Sofosbuvir + RIbavirin would be best for her situation as treatment with interferon could create serious issues for someone with her history. But that is a decision that an knowledgeable doctor who is aware of the latest AASLD/IDSA hepatitis C guidelines and who knows her condition should determine along with Kat understanding some of the risks any treatment could have in someone with her medical history.
Kat’s gastro is proposing to treat her with an old, obsolete treatment that has little chance of success. I think we should encourage her to seek out a better informed doctor who is aware of the latest treatment guidelines for treating hepatitis C so she can stop her cirrhosis before she suffers with other complications of the disease and her liver disease becomes irreversible.
Cheers
Hector
According to her post, Kat has Genoptype 3 HCV with Cirrhosis and is Treatment Experienced having treated with “Interferon & Ribovarin over ten years ago”.
Her gastro doctor is recommending that she treat for 24 weeks with Sofobuvir and Ribavirin.
Sofosbuvir and Ribavirin is NOT a recommended treatment for someone like Kat according to the AASLD/IDSA HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C treatment guidelines.
To quote from a Clinical Care Options paper titled “Evolving HCV Management in Harder-to-Treat Populations” regarding treatment of genotype 3 patients “… “SVR rates with sofosbuvir and ribavirin in genotype 3 are reduced when compared with other genotypes, particularly for treatment-experienced cirrhotic patients for whom the 24-week sofosbuvir plus ribavirin regimen has led to an SVR12 rate of 62% in clinical trials.”
Is it any wonder why this treatment is not recommended for someone like Kat?
Do we really want to recommend an ineffective, out-dated, 6 month treatment to someone with cirrhosis who has already been hospitalized with a SVR rate of only 62% when more effective treatments are now available for people like her?
In my opinion she and her doctor should follow the AASLD/IDSA treatment guidelines to give her the best chance of achieving SVR using the latest available recommended treatments.
Both of which have higher SVR rates than Sofosbuvir and Ribavirin alone!
The two AASLD/IDSA recommended treatments for someone like Kat are….
---------------------------------------------------------------------------
Recommended regimens for patients with HCV genotype 3 infection with cirrhosis, in whom prior treatment with PEG-IFN and RBV has failed.
Daily daclatasvir (60 mg) and sofosbuvir (400 mg) for 24 weeks with weight based RBV is recommended for patients with cirrhosis and HCV genotype 3 infection, in whom prior treatment with PEG-IFN and RBV has failed and who are IFN ineligible.
Rating: Class IIa, Level C
Daily sofosbuvir (400 mg) and weight-based RBV plus weekly PEG-IFN for 12 weeks is recommended for patients with HCV genotype 3 infection, in whom prior treatment with PEG-IFN and RBV has failed and who are IFN eligible.
Rating: Class I, Level A
-----------------------------------------------------------------------
I would imagine that the first treatment, Daclatasvir, Sofosbuvir + RIbavirin would be best for her situation as treatment with interferon could create serious issues for someone with her history. But that is a decision that an knowledgeable doctor who is aware of the latest AASLD/IDSA hepatitis C guidelines and who knows her condition should determine along with Kat understanding some of the risks any treatment could have in someone with her medical history.
Kat’s gastro is proposing to treat her with an old, obsolete treatment that has little chance of success. I think we should encourage her to seek out a better informed doctor who is aware of the latest treatment guidelines for treating hepatitis C so she can stop her cirrhosis before she suffers with other complications of the disease and her liver disease becomes irreversible.
Cheers
Hector
Hi Kat. I totally agree with everything my fellow comrades have said 100%.
I was geno 2 and my treatment was Ribaviren 1,200 a day and Sovaldi 400.
My treatment was for 3 months, not 6 months as geno 3s need added time.
My weight was and is 110 lbs. I was treated at Mayo Clinic. And Cirrhotic.
Again, my weight dosage should have been less but my virus kicked out in 7 days and never returned. Being stage 4 (Cirrhosis) it appeared to me that they were making darn sure my Hep C would be eradicated. I wouldn't hesitate to take the 1200 Riba if it meant the end result would be a cure. Although I was treated with an amazing Hepatologist and knew they were watching my back.
With the conditions you have described, as Pooh has said, you need to Hepa to see you thru whether you take the higher dose or not. These meds are not child's play and can cause serious side effects. In your shoes I would not walk the line without a liver specialist.
There are many of us on this forum that did the treatment for 6 months and were cured. Geno 3 is a tuff act to follow and you need the added time to secure a cure. Only a Hepatologist can guide you as anemia is a great concern. They can lower the dose if you run into trouble with low counts if need be, but you need expert guidance.
With your health issues it sounds as tho you need to get the ball rolling and begin treating your virus. As we age the damage from the virus speeds up and creates more havoc then when we were younger. We have all walked in your shoes and are here to give you support and knowledge. I implore you to trust the process and get back into the game of life, Hep C free.
......Kim
I was geno 2 and my treatment was Ribaviren 1,200 a day and Sovaldi 400.
My treatment was for 3 months, not 6 months as geno 3s need added time.
My weight was and is 110 lbs. I was treated at Mayo Clinic. And Cirrhotic.
Again, my weight dosage should have been less but my virus kicked out in 7 days and never returned. Being stage 4 (Cirrhosis) it appeared to me that they were making darn sure my Hep C would be eradicated. I wouldn't hesitate to take the 1200 Riba if it meant the end result would be a cure. Although I was treated with an amazing Hepatologist and knew they were watching my back.
With the conditions you have described, as Pooh has said, you need to Hepa to see you thru whether you take the higher dose or not. These meds are not child's play and can cause serious side effects. In your shoes I would not walk the line without a liver specialist.
There are many of us on this forum that did the treatment for 6 months and were cured. Geno 3 is a tuff act to follow and you need the added time to secure a cure. Only a Hepatologist can guide you as anemia is a great concern. They can lower the dose if you run into trouble with low counts if need be, but you need expert guidance.
With your health issues it sounds as tho you need to get the ball rolling and begin treating your virus. As we age the damage from the virus speeds up and creates more havoc then when we were younger. We have all walked in your shoes and are here to give you support and knowledge. I implore you to trust the process and get back into the game of life, Hep C free.
......Kim
Hi and Welcome to the Forum. you will get good information as well as caring support here.
I, too, WAS Hep 3 and treated with Sovaldi, 400 mg and Ribavirin, 1200 mg per day, as I was/ am over 165 lbs. the RIBA, as informed, gave me anemia, but, being retired, was able to just lay around all day, and, having to other side effects, I did not need other intervention, so I talked my Dr into not reducing my dosage. I was not cirrhosis, but was F3 - not far off - which is why my Dr wanted me to go ahead with treatment at that time, to, hopefully, keep me from progressing to F4. I also treated for 24 weeks.
The idea was to get rid of the virus for at least as long as I was on the Sol/RIBA, to keep the liver from becoming cirrhosis, until the new med for Gt3s came out.
The Daklinza has been on the market in Europe since Aug 2014, and in Japan for almost that long. It was approved in June (I think) in the U S., and, if I am not mistaken, is also now on the market here, to be taken 1 Daklinas 40 mg with 1 Sovaldi 400 mg daily - no RIBA.
What country do you live in? if here, you might want to ask your Dr about the Dac/Sol combo BUT s/he might have chosen to do the Sol/RIBA first, since you have treated before and then relapsed. That way, if you relapse again, OR if it turns out you can't take it due to the anemia problem, there is still an approved treatment to fall back on. The only real side effect I had was the extreme fatigue from the anemia, but, within 3 or so weeks after tx, I began to feel better, get some energy and at 12 weeks EOT, my HMG was back in the normal range.
Just for your info, the Sol/RIBA did the job for me! I am now 24 weeks plus (about a total of 9 months) post treatment!
Finally, I totally agree with Pooh that you need to be treated by a good Hepatologist, or Infectious Disease Specialist or Gastroenterologist who is very very familiar with Hep C, and is affiliated with a good teaching hospital or transplant center!
Good luck, good treating, and
Blessings for a stress free, side effect free, successful treatment. On to SVR!
Pat
I, too, WAS Hep 3 and treated with Sovaldi, 400 mg and Ribavirin, 1200 mg per day, as I was/ am over 165 lbs. the RIBA, as informed, gave me anemia, but, being retired, was able to just lay around all day, and, having to other side effects, I did not need other intervention, so I talked my Dr into not reducing my dosage. I was not cirrhosis, but was F3 - not far off - which is why my Dr wanted me to go ahead with treatment at that time, to, hopefully, keep me from progressing to F4. I also treated for 24 weeks.
The idea was to get rid of the virus for at least as long as I was on the Sol/RIBA, to keep the liver from becoming cirrhosis, until the new med for Gt3s came out.
The Daklinza has been on the market in Europe since Aug 2014, and in Japan for almost that long. It was approved in June (I think) in the U S., and, if I am not mistaken, is also now on the market here, to be taken 1 Daklinas 40 mg with 1 Sovaldi 400 mg daily - no RIBA.
What country do you live in? if here, you might want to ask your Dr about the Dac/Sol combo BUT s/he might have chosen to do the Sol/RIBA first, since you have treated before and then relapsed. That way, if you relapse again, OR if it turns out you can't take it due to the anemia problem, there is still an approved treatment to fall back on. The only real side effect I had was the extreme fatigue from the anemia, but, within 3 or so weeks after tx, I began to feel better, get some energy and at 12 weeks EOT, my HMG was back in the normal range.
Just for your info, the Sol/RIBA did the job for me! I am now 24 weeks plus (about a total of 9 months) post treatment!
Finally, I totally agree with Pooh that you need to be treated by a good Hepatologist, or Infectious Disease Specialist or Gastroenterologist who is very very familiar with Hep C, and is affiliated with a good teaching hospital or transplant center!
Good luck, good treating, and
Blessings for a stress free, side effect free, successful treatment. On to SVR!
Pat
Thank you as well pooh55811. I could not type just your screen name without the numbers following it. It made me laugh so hard.
:-)
You are a great resource and I thank you for taking the time to provide such valuable information. As you suggested I will reach out to HectorSF.
All the best to you!
:-)
You are a great resource and I thank you for taking the time to provide such valuable information. As you suggested I will reach out to HectorSF.
All the best to you!
Thanks very much for that info. I did not realize Ribo is weight based. You gave me very valuable information.
All the best to you.
All the best to you.
PS: If you post on the Cirrhosis forum you ma want to put something in the heading that says you are Cirrhotic.
Something like: Cirrhosis, Genotype 3, Sovaldi and Riba Treatment.
Best of luck with your treatment.
Something like: Cirrhosis, Genotype 3, Sovaldi and Riba Treatment.
Best of luck with your treatment.
As Idyllic said, Ribavirin is weight based, so the dose depends on how much you weigh.
I took 1200 mg of Ribavirin every day for 48 weeks. It was weight based and I was over 75 kg so I took the 1200 mg a day. It was not a picnic, but I did attain SVR. I also was on Interferon and Incivek. I think Incivek and Interferon caused me many more side effects than the Ribavirin did.
As you know, Genotype 3 is now the most difficult to cure. It is imperative to follow the regimen that the studies have found to be the most successful for Genotype 3, and that is weight based Ribavirin along with Sovaldi.
Since you are Cirrhotic, hopefully your doctor will be monitoring your blood counts and other lab work very closely. That way if your counts start to fall he/she can intervene with the appropriate intervention (Procrit, Neupogen, etc.)
Also, I hope your doctor is a Hepatologist. You relate that you have been recently hospitalized for severe anemia. As you know, Ribavirin can cause hemolytic anemia so you really need close monitoring by a Hepatologist, preferably a Hepatologist at a large university affiliated medical center/transplant center.
Many other Cirrhotics on this forum have successfully treated. Most of them had very competent Hepatologists to get them through treatment successfully.
You may want to post on the Cirrhosis of the liver forum. HectorSF (on the Cirrhosis of the liver forum) is very knowledgeable about Cirrhosis and treating Hepatitis C successfully. He was Genotype 1 but he is very knowledgeable about Cirrhosis, all Genotypes, treatment, complications, transplants, etc. He is a good resource if you have questions.
Here is a link to Cirrhosis of the Liver forum:
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
I took 1200 mg of Ribavirin every day for 48 weeks. It was weight based and I was over 75 kg so I took the 1200 mg a day. It was not a picnic, but I did attain SVR. I also was on Interferon and Incivek. I think Incivek and Interferon caused me many more side effects than the Ribavirin did.
As you know, Genotype 3 is now the most difficult to cure. It is imperative to follow the regimen that the studies have found to be the most successful for Genotype 3, and that is weight based Ribavirin along with Sovaldi.
Since you are Cirrhotic, hopefully your doctor will be monitoring your blood counts and other lab work very closely. That way if your counts start to fall he/she can intervene with the appropriate intervention (Procrit, Neupogen, etc.)
Also, I hope your doctor is a Hepatologist. You relate that you have been recently hospitalized for severe anemia. As you know, Ribavirin can cause hemolytic anemia so you really need close monitoring by a Hepatologist, preferably a Hepatologist at a large university affiliated medical center/transplant center.
Many other Cirrhotics on this forum have successfully treated. Most of them had very competent Hepatologists to get them through treatment successfully.
You may want to post on the Cirrhosis of the liver forum. HectorSF (on the Cirrhosis of the liver forum) is very knowledgeable about Cirrhosis and treating Hepatitis C successfully. He was Genotype 1 but he is very knowledgeable about Cirrhosis, all Genotypes, treatment, complications, transplants, etc. He is a good resource if you have questions.
Here is a link to Cirrhosis of the Liver forum:
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
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