Aa
New meds coming , why did my doc insist on treatment now?
With all the tc on the horizon hope my doc is right treating me with triple therapy ?
All this information is extremely helpful. I feel more confident about questioning my doctors approach to treatment !
*As someone brought up their doctor was concerned that if someone fails a previously attempted sovaldi based treatment they might not be allowed be treated in the future with sovaldi.
I guess one main concern which hasn't been brought up and having gone through the triple therapy myself two years ago was how it effected my ability to keep working while on treatment. One question to ask is are you working right now and did you let your employer know you are going to be treated? Any history of depression? Do you have the needed support in place before you start the treatment? If you have psychiatric side effects who's going to manage that end of the treatment? Have you talked to your doctor about any of this?
A very real concern when taking on a modified old school treatment involving interferon and believe me it's real hard to figure all that out when you're in the middle of the treatment. Kind of like trying to fix a plane when it's at 35,000 feet instead of when it's stationary and on the ground.
Everyone has different levels of sides so you have to be physically and mentally prepared for what might come up. What if you get irritable one day at work and blow someone off will you end up losing your job because of it? During my 12 week treatment with S/O no one had a clue I was being treated, a huge world of difference and and not even close to what I went through while on the triple.
There is also the risk of long term autoimmune disorders that are a greater risk of getting with the modified old school treatment. I put off trying the old treatment because I knew I would never be able to be off for a full year from work and to my surprise four months into my triple treatment my doctor now tells me I now have to be on it for 48 weeks. My employer flipped. Stopping treatment at six months caused me to not be eligible for any clinical trials because I was told I was a quitter. As someone brought up hopefully is someone fails a sovaldi based treatment they might not be allowed to try another sovaldi based treatment.
If insurance isn't a problem or employment and your condition isn't advanced waiting an extra 6 months IMHO for a safer just as effective treatment seems reasonable.
A lot to consider but in the end it's your decision. In many cases the doctors treating patients don't seem to understand or want to get involved with the sides so that's something to diffidently bring up to your doctor.
Which you all the best in whatever you decide to do.
A very real concern when taking on a modified old school treatment involving interferon and believe me it's real hard to figure all that out when you're in the middle of the treatment. Kind of like trying to fix a plane when it's at 35,000 feet instead of when it's stationary and on the ground.
Everyone has different levels of sides so you have to be physically and mentally prepared for what might come up. What if you get irritable one day at work and blow someone off will you end up losing your job because of it? During my 12 week treatment with S/O no one had a clue I was being treated, a huge world of difference and and not even close to what I went through while on the triple.
There is also the risk of long term autoimmune disorders that are a greater risk of getting with the modified old school treatment. I put off trying the old treatment because I knew I would never be able to be off for a full year from work and to my surprise four months into my triple treatment my doctor now tells me I now have to be on it for 48 weeks. My employer flipped. Stopping treatment at six months caused me to not be eligible for any clinical trials because I was told I was a quitter. As someone brought up hopefully is someone fails a sovaldi based treatment they might not be allowed to try another sovaldi based treatment.
If insurance isn't a problem or employment and your condition isn't advanced waiting an extra 6 months IMHO for a safer just as effective treatment seems reasonable.
A lot to consider but in the end it's your decision. In many cases the doctors treating patients don't seem to understand or want to get involved with the sides so that's something to diffidently bring up to your doctor.
Which you all the best in whatever you decide to do.
My only wish for you is that you can talk intelligently with your doctor and realize the different options. Unfortunately a lot of docs take the easy way out and unless they devote a lot of time researching, the field of HCV treatment is moving so fast they sometimes need to be nudged into exploring all the options.
This is from the Mayo clinic...here in the good ole USA.
"In patients with genotype 1 or 4 and cirrhosis who have intolerance or contraindications to PEGINF, our treatment approach is SOF and SMV for 12 weeks. In patients with HCV-induced extrahepatic manifestations such as symptomatic cryoglobulinemia, glomerulonephritis, or B-cell lymphoma, regardless of fibrosis stage, we also use SOF and SMV. We do not believe that testing for the Q80K sequence variation is necessary when treating patients who have genotype 1a with SOF and SMV. The SVR when this sequence variation is present is still 90%, and there is no suggestion from the data that adding RBV or extending the duration of therapy to 24 weeks enhances SVR. We do not recommend 24 weeks of SOF and RBV in these patients; the cost of this regimen is prohibitive, and the SVR rate is estimated to be only in the 70% to 75% range, approximately 20% lower than that observed with SOF and SMV. We also do not recommend deferring treatment in this population, and payers should recognize their need for treatment. These patients have cirrhosis, are at risk for development of severe and life-threatening complications of cirrhosis, and should not have to wait for an alternative all-oral regimen."
Good luck with your decision!
This is from the Mayo clinic...here in the good ole USA.
"In patients with genotype 1 or 4 and cirrhosis who have intolerance or contraindications to PEGINF, our treatment approach is SOF and SMV for 12 weeks. In patients with HCV-induced extrahepatic manifestations such as symptomatic cryoglobulinemia, glomerulonephritis, or B-cell lymphoma, regardless of fibrosis stage, we also use SOF and SMV. We do not believe that testing for the Q80K sequence variation is necessary when treating patients who have genotype 1a with SOF and SMV. The SVR when this sequence variation is present is still 90%, and there is no suggestion from the data that adding RBV or extending the duration of therapy to 24 weeks enhances SVR. We do not recommend 24 weeks of SOF and RBV in these patients; the cost of this regimen is prohibitive, and the SVR rate is estimated to be only in the 70% to 75% range, approximately 20% lower than that observed with SOF and SMV. We also do not recommend deferring treatment in this population, and payers should recognize their need for treatment. These patients have cirrhosis, are at risk for development of severe and life-threatening complications of cirrhosis, and should not have to wait for an alternative all-oral regimen."
Good luck with your decision!
Thank you all ! I feel I will be entering this tx with my eyes wide open . It does seem my only choice and time is running out.
Hi Buba
As nan535 said the recommended treatment per the American Association for the study of liver diseases for GT 4 the first choice is Sovaldi with interferon and Ribavirin
from the treatment guidelines:
In the Phase 3 NEUTRINO trial, 28 treatment-naive patients with HCV genotype 4 infection were treated with sofosbuvir (400 mg daily) plus PEG (2a) (180 µg weekly) and weight-based RBV (1000 mg 1200 mg once daily) for 12 weeks. Of the 28 patients with genotype 4, 27 (96%) achieved SVR12.
there are a couple of other options but this is the first choice. If you are interferon intolerant the second choice is Sovaldi and ribavirin
again from the treatment guidelines:
In a small study of Egyptian patients in the United States treated with sofosbuvir plus weight-based RBV (1000 mg to 1200 mg), SVR12 was achieved in 11/14 (79%) and 14/14 (100%) in treatment-naive patients treated for 12 weeks and 24 weeks, respectively. In treatment-experienced patients treated for 12 weeks and 24 weeks, SVR12 was achieved in 10/17 (59%) and 13/15 (87%), respectively
So those are your primary options based on the AASLD for Genotype 4.
This is my interpretation of the guidelines and I am not a medical professional. But to me your doctors recommendations sound like the correct choice for you.
The listing above Pamelajean is from the EASL European Association for the study of the Liver so it may not be how we go in the US.
Good luck on treatment whatever choice you make
Lynn
As nan535 said the recommended treatment per the American Association for the study of liver diseases for GT 4 the first choice is Sovaldi with interferon and Ribavirin
from the treatment guidelines:
In the Phase 3 NEUTRINO trial, 28 treatment-naive patients with HCV genotype 4 infection were treated with sofosbuvir (400 mg daily) plus PEG (2a) (180 µg weekly) and weight-based RBV (1000 mg 1200 mg once daily) for 12 weeks. Of the 28 patients with genotype 4, 27 (96%) achieved SVR12.
there are a couple of other options but this is the first choice. If you are interferon intolerant the second choice is Sovaldi and ribavirin
again from the treatment guidelines:
In a small study of Egyptian patients in the United States treated with sofosbuvir plus weight-based RBV (1000 mg to 1200 mg), SVR12 was achieved in 11/14 (79%) and 14/14 (100%) in treatment-naive patients treated for 12 weeks and 24 weeks, respectively. In treatment-experienced patients treated for 12 weeks and 24 weeks, SVR12 was achieved in 10/17 (59%) and 13/15 (87%), respectively
So those are your primary options based on the AASLD for Genotype 4.
This is my interpretation of the guidelines and I am not a medical professional. But to me your doctors recommendations sound like the correct choice for you.
The listing above Pamelajean is from the EASL European Association for the study of the Liver so it may not be how we go in the US.
Good luck on treatment whatever choice you make
Lynn
Yup, what Pamelajean1 said, personally having gone down the interferon road before myself, if you can avoid that experience and wait for the other might be a good idea. If you and your doctor think it's best I believe the daclatasvir will be approved in November. It's also up to your insurance company to approve it and they won't address that until it's FDA approved.
I really thought this was the treatment for me , considering the cure rate ,but the more I read the more confused I get
According to recommendations of EASL...
" Patients infected with HCV genotype 4 can be treated with an interferon-free combination of daily sofosbuvir (400 mg) and daily simeprevir (150 mg) 12 weeks.....Comments: There is no data with this combination in patients infected with HCV genotype 4. Nevertheless, given the antiviral effectiveness of both sofosbuvir and simeprevir against this genotype, it is likely that the results of the COSMOS trial in patients infected with genotype 1 can be extrapolated [28]."
"Patients infected with HCV genotype 4 can be treated with an interferon-free combination of daily sofosbuvir (400 mg) and daily daclatasvir (60 mg)
12 weeks in treatment-naïve patients or 24 weeks in treatment-experienced patients (pending data with 12 weeks of therapy in treatment-experienced patients) (Recommendation B2)...Comments: There is no data with this combination in patients infected with HCV genotype 4. Nevertheless, given the antiviral effectiveness of both sofosbuvir and daclatasvir against this genotype, it is likely that the results in patients infected with genotype 1 can be extrapolated."
Personally, I'd have serious convo with my doc about any option that was interferon and ribavirin free. Good Luck!
" Patients infected with HCV genotype 4 can be treated with an interferon-free combination of daily sofosbuvir (400 mg) and daily simeprevir (150 mg) 12 weeks.....Comments: There is no data with this combination in patients infected with HCV genotype 4. Nevertheless, given the antiviral effectiveness of both sofosbuvir and simeprevir against this genotype, it is likely that the results of the COSMOS trial in patients infected with genotype 1 can be extrapolated [28]."
"Patients infected with HCV genotype 4 can be treated with an interferon-free combination of daily sofosbuvir (400 mg) and daily daclatasvir (60 mg)
12 weeks in treatment-naïve patients or 24 weeks in treatment-experienced patients (pending data with 12 weeks of therapy in treatment-experienced patients) (Recommendation B2)...Comments: There is no data with this combination in patients infected with HCV genotype 4. Nevertheless, given the antiviral effectiveness of both sofosbuvir and daclatasvir against this genotype, it is likely that the results in patients infected with genotype 1 can be extrapolated."
Personally, I'd have serious convo with my doc about any option that was interferon and ribavirin free. Good Luck!
Your being geno 4, definitely adds a wrinkle to the idea of waiting.
From what I understand, the combo pill to be approved in October is being approved for Geno 1 only.
The recommended treatment for Geno 4 according to the hcv guidelines( see pg 23) http://www.hcvguidelines.com is the triple treatment your doctor wants you to start. An alternate treatment for Geno 4 (for those who are ineligible for interferon) is Sovaldi + Ribavirin for 24 weeks. There is another alternate treatment listed - triple treatment with Simeprevir instead of Sovaldi. In this scenario, you would take Simeprevir for 12 weeks and interferon and ribavirin for 24-48 weeks.
The treatment your doctor is planning is only for 12 weeks. Unless you have little or no damage to your liver, its probably not a good idea to wait. Who knows how long it will be before another treatment will be approved for your genotype.
Again the best person to answer all these questions is your doctor. Knowing your options going in is always a good thing.
Nan
From what I understand, the combo pill to be approved in October is being approved for Geno 1 only.
The recommended treatment for Geno 4 according to the hcv guidelines( see pg 23) http://www.hcvguidelines.com is the triple treatment your doctor wants you to start. An alternate treatment for Geno 4 (for those who are ineligible for interferon) is Sovaldi + Ribavirin for 24 weeks. There is another alternate treatment listed - triple treatment with Simeprevir instead of Sovaldi. In this scenario, you would take Simeprevir for 12 weeks and interferon and ribavirin for 24-48 weeks.
The treatment your doctor is planning is only for 12 weeks. Unless you have little or no damage to your liver, its probably not a good idea to wait. Who knows how long it will be before another treatment will be approved for your genotype.
Again the best person to answer all these questions is your doctor. Knowing your options going in is always a good thing.
Nan
Yes I am a type four and have been interested in treatment since I was diagnosed in 2012 I expect he will tell me just that but at least i will be sure it is my only option .
I see them on the 28 th , I have a whole list of questions. Thanks to reading this forum .
My guess would be your genotype 4. Which at one time was the hardest to cure. Follow your doctors advice as the results with the current treatment he wants you on are very good concerning type 4.
If you have not started treatment, I would definitely ask him (or her). Do you have advanced liver disease (F3/4). If not, ask if you can wait until November for the new treatment. The cure rates are better and few side effects.
If you do have advanced fibrosis, he may want to stop the progression of the damage to the liver. If you have cirrhosis, you should definitely have a conversation about whether this interferon/ribavirin based treatment may push you into decompensation.
Either way, you should not be wondering why. Ask the questions - you are entitled to the answers before starting treatment.
I wish you the best.
Nan
If you do have advanced fibrosis, he may want to stop the progression of the damage to the liver. If you have cirrhosis, you should definitely have a conversation about whether this interferon/ribavirin based treatment may push you into decompensation.
Either way, you should not be wondering why. Ask the questions - you are entitled to the answers before starting treatment.
I wish you the best.
Nan
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