Price seems to be the primary motive for each country. I think because the Netherlands arranged a satisfactory discount, at least in their opinion, it has enabled patient comfort on treatment. Riba also pushes costs higher with continual patient monitoring, and it is rather more uncomfortable even though its very affective.
Either way, these drugs are very doable and a chance to free ourselves of these chains. I do believe the new combos on trail are even more effective than the combinations we have right now with the shorter duration times.
I do remember reading trail information that 6 months of Dac/Sof did give a small percentage higher rate of cure, but it wasn't necessary due to the 80% cure rate at 12 weeks, which is compareable to Inter/Riba past treatment for G3's. The first trails gave an indication of 100% cure, but subsequent studies showed the odd relapse which occurs in all genotypes.
I also remember reading that the addition of riba for 12 weeks with Sof/Dac was as affective as 24 weeks Sof/dac reducing the toxicity period of Riba, and overall treatment times. 24 weeks is a very long time to pop pills in anyone's books. But, if I was F4, I'd want to do a longer course as waiting is not really an option at that stage. For someone like me, if I fail, there are new combos on the horizon and I can afford to wait. I guess perspective is the key...
Either way, I hope that things speed up in each country as no one wants this joy rider in them, and lets be honest, if all that was available was Sof/Riba here, we'd all still think it was a blessing missing out on Interferon.
But agreed, health is important and if you can't afford to wait, no one should kid themselves about treating and should consider what is best for them. :)
Canuck said
Jun 14, 2016
Hi Pablito, Loopylisa and Ruby,
I agree, that is what the "recommendations" state, and are, (and of course recommendations may always be ever changing as treatment drugs and views change, and, governing powers that be, catch up to the thinking), but I am thinking of 2 people, as "example", who quite recently, on this forum, wished for and made sure they got 24 weeks of sof/dac treatment. They were both with higher F scores, and were glad they made sure they got and did 24 weeks of sof/dac.
Another longtime GT 3a, like myself, treatment naive, high F score 18.8 kPa (F4), arduously, had to go and obtain his own sof/dac out of country - he made sure he got himself 24 weeks, he felt more "reassured" that he planned for a longer course, (whether it made any dif., who will ever know, for sure), but in retrospect, (he does not post here anymore) as we converse, he told me he was very glad he slogged out a longer course, as he felt it was his "insurance". He was Und at 5 weeks, completed his 24 weeks of sof/dac, he is SVR 12 now, and has already experienced some fibroscan regression in his F score. He remains very glad with his decision that he did 24 weeks of sof/dac versus a shorter run.
Another longtime GT 2 I know, treatment naive, advanced cirrhosis, acities, etc., also had to arduously obtain out of country drugs sof/dac/riba by themselves. Was not able to tolerate the riba more than the first 12 weeks tho. The last additional continuing 12 weeks of sof/dac had to be bartered for (in country) by asking the doc if he knew (for a fact) that 12 vs 24 weeks was going to work. They made sure the additional 12 weeks of sof/dac (no riba) was approved, for a total treatment length of 24 weeks. Und at 9 weeks, Und at EOT.
It is such a investment into our health, no one wants to risk being undertreated. That, of course, would be my concern, and perspective, as I have just finished a "trial" course of treatment of newer daa's that was only 8 weeks long.
In BC, Canada (as far as I know), for the last year nothing has changed, as far as making sof/dac "readily available" to me as a GT3a, as a first choice treatment (even tho sof/dac is a Canada-wide "approved" regime, every Provinces "pharmacare" can decide what drugs they wish you to try first. As a GT3, I was offered (through pharmacare) first and only, 24 weeks of sof/riba. (In the "fine-print") - I would have had to have failed a course of sof/riba first (or prove that I could not take riba, on medical grounds) before being offered sof/dac. Do I do the sof/riba first?, do I just wait for sof/dac to be made available by pharmacare to everyone as a first choice? (how long would I have to wait for pharmacare to make sof/dac readily available to me as a first choice?, do I have to fail an attempt at sof/rib first before that may happen?), or do I just go and get my own sof/dac? - no, I opted to go with the experimental trial drug opportunity instead. Had it not been for the trial drugs, I too would have probably elected to obtain 24 weeks of sof/dac out of country as well.
Just my slant on lengths of treatment and drugs choices. I figure it never hurts to suss these things thoroughly with your doc so all the possible options are known.
http://www.hepctip.ca/wp-content/uploads/2016/06/June.png C.
Pablito said
Jun 14, 2016
Hi Lisa
The EASL guidelines are from last year, which although is that not long ago things are moving so fast in the DAA world a year is a long time. I've read through them all now and my observation is that whist they are very evidence-driven they do tend to err on the shorter side of treatments.
Pablo
robertsamx said
Jun 14, 2016
I remember seeing something on this combo last year, and the svr results we're within 5% of each other. W/riba and w/o riba <+> 5%. This combo w/o roba should do the job. RC
Loopy Lisa said
Jun 14, 2016
Pablito wrote:
Hi Ruby
I've posted the EASL (European) guidelines for people with HCV and cirrhosis. 12 weeks of sof/dac (without ribavirin) x 12 weeks or sof/rib x 16 weeks are the two recommendations for G2 so it seems your doctor is in keeping with the guidelines.
The EASl guidelines came out a year ago and the field is moving so quickly so I'd personally feel more comfortable with 24 weeks of sof/dac but if your insurer only offers 12 then it does seem to be in keeping with the evidence base.
Pablo
That is interesting, I thought they added Riba alongside Sof/dac. for those with cirrhosis for 12 weeks, with possible extension to 16 if the viral count doesn't dip. I think over here they just passed the Riba all together, I am certainly not the first prescribed this combo and the hospital pharmacy gets every Friday a new batch in...I would personally push for Sof/dac if it is available, hell, what do we all pay insurance for!!! :D
Pablito said
Jun 14, 2016
Hi Ruby
I've posted the EASL (European) guidelines for people with HCV and cirrhosis. 12 weeks of sof/dac (without ribavirin) x 12 weeks or sof/rib x 16 weeks are the two recommendations for G2 so it seems your doctor is in keeping with the guidelines.
The EASl guidelines came out a year ago and the field is moving so quickly so I'd personally feel more comfortable with 24 weeks of sof/dac but if your insurer only offers 12 then it does seem to be in keeping with the evidence base.
Interesting, are those your ONLY choices (based only on your insurance provider coverage) to get either sof/riba, or, sof/dac?
As GT 2, a prior peg/riba relapser (2010), and now a fibroscan showing 22kPa - were these the ONLY drug combo's you and your doc were able to consider? Is it all boiling down to what drugs your insurance provider is willing to cover??
If so, 24 weeks sof/dac would be my choice, just based on your 2010 history, your current 22 kPa, and recent history of having low platelets this year, and, my prejudice against riba - I hate to see anyone dealing with the side effects from riba if and when they occur.
I would have another chat with your doc (if you could), and see if he agrees with the premise that (1) firstly, you should have 24 weeks of treatment, period, just based on your degree of cirrhosis, and, (2) find out, IF you and your doc DO have a preference for 24 weeks of ONLY sof/dac (over sof/riba), then whether you and your docs preference could influence/override your "providers" approval of sof/riba only, and, (3) whether there is any "other" drug choice for you, such as the sof/velpa or sof/velpa/vox that Tig mentioned to you.
Your provider may well come back and "first" offer you sof/riba, but, if you and your doc think it best you be on sof/dac for 24 weeks, or suggest some other combo, then that "might" affect what drugs you DO get in the end.
Leave no stone unturned. Your treatment choice is important (if you or your doc get any say in the matter). We all want to you have the best possible drugs (given the circumstances), and, regardless, even if you do end up having to do riba this time around - with sof on your side, and a long course - you will kill it.
You'll get it this time! C.
JimmyK said
Jun 13, 2016
Ruby Red wrote:
Hi everyone :)
A new member here and I am looking forward to receiving info and hopefully being able to give some information to help others.
Looking at going into treatment this month....the stale is waiting hear which treatment I will be approved for. The meds are between Solvardi/Daclatasvir OR Solvardi/Ribavirin, apparently this depends on my insurance provider
Greetings I am glad you are here.
Can you please clarify?
Solvardi/Ribavirin I am aware of and have read the trials. But are you sure the other is Solvardi/Daclatasvir ?
Do you by chance mean Daclatasvir plus Sofosbuvir?
I am not aware that they mix Solvardi/Daclatasvirin a treatment regiment.
Please excuse my questioning. Thanks!
JimmyK
robertsamx said
Jun 13, 2016
Lady's and Dragons--- LETS GET READY TO RUMMMMMBLE!!
In this corner we have Ruth- armed with the latest in DAA treatment drugs
And in the opposite corner we have a tired worn out old despicable dragon that doesn't stand a chance against your new arsonal of weapons of mass destruction.
YOU GOT THIS ONE IN THE BAG
RC
Linuxter said
Jun 13, 2016
Welcome Ruth, we're glad you're here!
The DAA's will put that Dragon down for good ... and Tx will be very much easier this round, guaranteed!
Do settle in here, we're just a big family and now you're part of it, welcome.
Feel free to ask for help in using the site, we do have some tutorials that should help.
Once you get settled in, we can point you in the right direction for those.
Please do keep us posted on how things are going, the more you keep us in the loop, the more we can help you through it all.
Take Care and Be Well,
Dave
RAGDOLL said
Jun 13, 2016
Hi Ruth and welcome to the forum. The options today are so much better. Hopefully you can avoid the RIBA. The new DAA's have such great results. Best wishes on round 2. CC
Ruby Red said
Jun 12, 2016
Thanks everyone for your feedback. A lot of great info and wonderful encouragment.
No news as of yet on which treatment will be approved but I do believe in perfect timing so I'm not concerned. To be honest, I love the summer, it's my favourite season so if this waiting game extends a little longer that's ok with me :)
I had the Fibroscan last week, it was similar to an ultra sound and took about 5 minutes believe me it was a cake walk compared to the liver biopsy I had in 2009 UGH! I received my results right away too! Fibroscan results 22.0 proving the dragon is fully at work.
The last time I started treatment I can say I did it out of fear and truly had no idea of what the virus was all about nor did I understand the side effects of the peg/riba, I with my rose coloured glasses I believed the "flu like symptoms" as reported. :) Looking back, was I duped lol
This time I am being pro-active. I have started on Essiac along with my other supplements getting as strong and healthy as I can be pre-treatment hoping it will help with my blood and other issues that may come along. Docs don't like to hear about the herbal supplements but that's my route of choice. (the supplements I am taking are not in contradiction to either therapies that are being considered) This time I am knowledgeable and acquiring new information and getting into the "positive" mind set which I feel is a huge key to this. I sound all tough, like I have it all together lol
I believe this virus can be beaten and I am going to do my very best to make sure that happens! If I never hear the words "viral load" again, it will be too soon :)
Hang in everyone...your in my prayers :)
Pablito said
Jun 9, 2016
Hi Ruth
Welcome. Tig and Syd have given good advice. If you could get sof/dac for 24 weeks that would be the ideal, and if you could tolerate ribavirin for the full 24 or even 12 weeks that will push your SVR chance closer to 100%.
But sof/dac without ribavirin is still very good. The rib would just add a couple of percentage points to the chance of SVR but is mighty unpleasant stuff, as you'll know.
Your insurer you may just want you to have 12 weeks sof/dac for financial reasons and that gives you a goodly chance still, but 24 would be better if you have cirrhosis.
If they say you can only have sof/rib then insist on 24 weeks.
Pablo
wendyo said
Jun 9, 2016
Welcome Ruth,
Glad you have options today! Far cry than we did years ago. I had the same experience on the peg + interferon. Keep us posted on which one they decide upon and know you have a hist of suport here.
wendy
Sydhanrahan said
Jun 9, 2016
Hi Ruby Red,
there seem to be so many combinations of these drugs and my own knowledge is strictly anecdotal.
i am so sorry that your first round of treatment was unsuccessful. Interferon had harsher side effects than RIBA though didn't it? Maybe this round will be easier whatever direction you take, without interferon.
I too am G2 and have just finished 24 weeks of Sof/dac with RIBA for the first 12. I didn't take RIBA for the second 12 weeks as it messed with my head and body, of course I sort if regret it now. I was virus free at the end of treatment but am still in the holding bay to see if I am really cured.
Whatever happens, I hope it happens soon for you as my cirrhosis turned into decompensated quite fast and the symptoms aren't good. Try to get 24 weeks if you can - I think they try to fob you off with 12 because of the cost but cirrhotics don't respond as well as people with less damaged livers. My last 12 weeks of Sof/dac were basically side effect free.
Take care.
Syd
ps, as you know RIBA does make you tired but your anemia should be monitored and the dosage adjusted accordingly.
Loopy Lisa said
Jun 9, 2016
Hi Ruby Red,
Welcome to the forum :D
I am curious as to why the Doctor if he can provide Daclasvir would even consider Riba? Could you not push for the latter if it is available?
I had Riba last time, and it worked too hard and fast on my body and so they consider me Riba intolerant. I also read they don't recommend Riba anymore for GT2 nor 3 as it is less affective compared to the new DDA's and causes a lot more problems with extra testing, side affect control etc.
It seems very unfair to make you go through Riba again. It is worth a try at least to question his choice, as obviously he can access the other meds.
Thinking of you!
Tig said
Jun 8, 2016
No, I haven't heard of switching from Riba to Dak mid treatment, but they're trying new things all the time. I have heard of people taking Sov/Dak/Riba and stopping Riba during treatment. It's always possible, depending on your weight and doctor, to reduce the Riba if side effects become an issue. It's always best to keep your dose as high as you can tolerate, but again, that's dependent on your lab results, and your doctor. GT 2 is responsive to your protocol, and I have little doubt that you'll do well. Ribavirin is a very effective medication, but has some side effects that we'd all prefer to avoid if possible. You can do that by keeping adequately hydrated, that's so vital. I'm sure you're aware that it can affect your mood, bring on some anemia, which may present itself as shortness of breath and fatigue, all part of the process. Stay out of the sun and whenever you're outside, cover up, use sunscreen, a hat and good glasses. That stuff will make you photosensitive, trust me, I know! Sunburn city, my head got fried cause I failed to wear a hat. Florida sun in the summer is nothing to play with, live and learn, ha!
K8 said
Jun 8, 2016
Thanks, Tig
This explains what I thought about Dac vs Riba. for now, I am hoping to take the $6, 000 that I have "saved" by taking Riba and go on a pilgrimage Santiago del Compostela. But I agree the DAC would have been better than Riba. Dr told me if the Riba was too hard, he could switch me to DAC
Have you heard of switching in mid treatment?
K8 said
Jun 8, 2016
Welcome, Ruby Red,
This forum helps a lot. I am in the middle of Solvadi & Riba treatment. I too the Riba & interferon in 2007 and remember well being so tired. I was very anxious about starting the RIBA, when I discussed with Doc and asked him if there is a big difference in the actual results since the DAC would have cost me $2,000 a month. He said to go on RIBA and it wasn't worth the $6,000.
The Riba is challenging & somedays (like today) I stayed on the couch, I am pacing myself not to do the usual long days that I have and drinking lots of water (96 oz). Low energy and foggy brain (my friends tell me to rest but what I am experiencing is more like inertia. But I felt I had to at least try as $ 6,000 is a lot of $
Some days I feel like my old self and after resting today, I think tomorrow I will rebound. The good news is that the virus is undetectable at this point. Staying focused on the goal. Good luck and I am grateful to have folks to share this journey.
Tig said
Jun 8, 2016
Hi Ruth,
Welcome to the forum! The wait begins huh? That's often the hardest part of this, waiting and waiting for someone to make a decision. The good news is you're a GT 2, that's one of the easier geno's to treat because it responds to these new DAA's well, but left untreated can be just as troublesome as the rest. I'm sorry you've progressed to cirrhosis though, but even then your SVR rate is very good.
Since you have past treatment history with Peg Int/Riba, and cirrhosis, if you retreat with Sovaldi and Ribavirin, you could be prescribed either 12 or 24 weeks, I would want 24 if I could get it approved. The difference in SVR rates ranges from 88-92% and the Sovaldi/Dak combo for you according to trial SVR estimate is in the low to mid 90 percentile for 12 weeks of treatment. The Daclatasvir would be worth considering, it delivers fewer side effects and with Sovaldi, would be once daily dosing. Ribavirin requires twice daily dosing, combined with once daily Sovaldi. If you had trouble with anemia last time around, the Daclatasvir may be something to speak to your doctor about. There are also trials underway in Canada right now that may still be available with Sovaldi, Velpatasvir w/wo GS9857. We have a fellow Canadian that is finishing up that trial and has done very well. You might ask about that. Your doctor may be able to shed some light on that. Location is important as well.
I expect there will be others along shortly to welcome you to the family. We all look after one another and there is usually someone around all the time. If you have any questions, please don't hesitate to ask. I'm glad you're here! It's a great time to treat and you'll be free of this once and for all. We'll be here to help, count on it!
robertsamx said
Jun 8, 2016
Hi Ruth, Welcome to the forum. Glad you found us, we can help. I"m with you on the - let's not do RIBA again- If I were you I would push for the Dac-sof. The side effects of this combo are nothing compared to RIBA. Let's hope your fibroscan comes in under 8. We'll keep an eye on you- Keep us posted. RC
Shadowfax said
Jun 8, 2016
Welcome to the forum Ruby Red,
we are glad you found us and I assure you there will be many people along shortly to answer any and all questions you have. There are many different protocols that people have been on and they can best answer from their experience. There are also sections for the different treatments ..
Once again, welcome and you're right. This is a virus that will be beaten.
Take good care
SF
Ruby Red said
Jun 8, 2016
Hi everyone :)
A new member here and I am looking forward to receiving info and hopefully being able to give some information to help others.
Looking at going into treatment this month....the stale is waiting hear which treatment I will be approved for. The meds are between Solvardi/Daclatasvir OR Solvardi/Ribavirin, apparently this depends on my insurance provider
I have been on treatment before in 2010 (pegatron), after 24 weeks the virus decided to replicate.
I'm a GT2, I was diagnosed in 2007 and to be quite honest I had no idea what Hep C even was...so started the journey. After treatement in 2010 I decided to not take any further steps, I was tired. I have recently found out through other tests that cirrhosis has developed (I am having a fibre scan this week to see what step the cirrhosis has developed into.
This past year it has been found that I have very low platelets, white blood cell count and a high RDW count. Due to this, I am concerned about he ribavirin as it made me anemic last time around.
I am wondering if anyone is experiencing this and of course I so welcome any feedback.
I want to say I do wish everyone the best of health and truly believe this will be one virus that will be beaten!
PS. I will definitely will need some help using this site ...I will thank you in advance
Hi All,
Price seems to be the primary motive for each country. I think because the Netherlands arranged a satisfactory discount, at least in their opinion, it has enabled patient comfort on treatment. Riba also pushes costs higher with continual patient monitoring, and it is rather more uncomfortable even though its very affective.
Either way, these drugs are very doable and a chance to free ourselves of these chains. I do believe the new combos on trail are even more effective than the combinations we have right now with the shorter duration times.
I do remember reading trail information that 6 months of Dac/Sof did give a small percentage higher rate of cure, but it wasn't necessary due to the 80% cure rate at 12 weeks, which is compareable to Inter/Riba past treatment for G3's. The first trails gave an indication of 100% cure, but subsequent studies showed the odd relapse which occurs in all genotypes.
I also remember reading that the addition of riba for 12 weeks with Sof/Dac was as affective as 24 weeks Sof/dac reducing the toxicity period of Riba, and overall treatment times. 24 weeks is a very long time to pop pills in anyone's books. But, if I was F4, I'd want to do a longer course as waiting is not really an option at that stage. For someone like me, if I fail, there are new combos on the horizon and I can afford to wait. I guess perspective is the key...
Either way, I hope that things speed up in each country as no one wants this joy rider in them, and lets be honest, if all that was available was Sof/Riba here, we'd all still think it was a blessing missing out on Interferon.
But agreed, health is important and if you can't afford to wait, no one should kid themselves about treating and should consider what is best for them. :)
Hi Pablito, Loopylisa and Ruby,
I agree, that is what the "recommendations" state, and are, (and of course recommendations may always be ever changing as treatment drugs and views change, and, governing powers that be, catch up to the thinking), but I am thinking of 2 people, as "example", who quite recently, on this forum, wished for and made sure they got 24 weeks of sof/dac treatment. They were both with higher F scores, and were glad they made sure they got and did 24 weeks of sof/dac.
Another longtime GT 3a, like myself, treatment naive, high F score 18.8 kPa (F4), arduously, had to go and obtain his own sof/dac out of country - he made sure he got himself 24 weeks, he felt more "reassured" that he planned for a longer course, (whether it made any dif., who will ever know, for sure), but in retrospect, (he does not post here anymore) as we converse, he told me he was very glad he slogged out a longer course, as he felt it was his "insurance". He was Und at 5 weeks, completed his 24 weeks of sof/dac, he is SVR 12 now, and has already experienced some fibroscan regression in his F score. He remains very glad with his decision that he did 24 weeks of sof/dac versus a shorter run.
Another longtime GT 2 I know, treatment naive, advanced cirrhosis, acities, etc., also had to arduously obtain out of country drugs sof/dac/riba by themselves. Was not able to tolerate the riba more than the first 12 weeks tho. The last additional continuing 12 weeks of sof/dac had to be bartered for (in country) by asking the doc if he knew (for a fact) that 12 vs 24 weeks was going to work. They made sure the additional 12 weeks of sof/dac (no riba) was approved, for a total treatment length of 24 weeks. Und at 9 weeks, Und at EOT.
It is such a investment into our health, no one wants to risk being undertreated. That, of course, would be my concern, and perspective, as I have just finished a "trial" course of treatment of newer daa's that was only 8 weeks long.
In BC, Canada (as far as I know), for the last year nothing has changed, as far as making sof/dac "readily available" to me as a GT3a, as a first choice treatment (even tho sof/dac is a Canada-wide "approved" regime, every Provinces "pharmacare" can decide what drugs they wish you to try first. As a GT3, I was offered (through pharmacare) first and only, 24 weeks of sof/riba. (In the "fine-print") - I would have had to have failed a course of sof/riba first (or prove that I could not take riba, on medical grounds) before being offered sof/dac. Do I do the sof/riba first?, do I just wait for sof/dac to be made available by pharmacare to everyone as a first choice? (how long would I have to wait for pharmacare to make sof/dac readily available to me as a first choice?, do I have to fail an attempt at sof/rib first before that may happen?), or do I just go and get my own sof/dac? - no, I opted to go with the experimental trial drug opportunity instead. Had it not been for the trial drugs, I too would have probably elected to obtain 24 weeks of sof/dac out of country as well.
Just my slant on lengths of treatment and drugs choices. I figure it never hurts to suss these things thoroughly with your doc so all the possible options are known.
http://www.hepctip.ca/wp-content/uploads/2016/06/June.png
C.
Hi Lisa
The EASL guidelines are from last year, which although is that not long ago things are moving so fast in the DAA world a year is a long time. I've read through them all now and my observation is that whist they are very evidence-driven they do tend to err on the shorter side of treatments.
Pablo
I remember seeing something on this combo last year, and the svr results we're within 5% of each other. W/riba and w/o riba <+> 5%. This combo w/o roba should do the job. RC
That is interesting, I thought they added Riba alongside Sof/dac. for those with cirrhosis for 12 weeks, with possible extension to 16 if the viral count doesn't dip. I think over here they just passed the Riba all together, I am certainly not the first prescribed this combo and the hospital pharmacy gets every Friday a new batch in...I would personally push for Sof/dac if it is available, hell, what do we all pay insurance for!!! :D
Hi Ruby
I've posted the EASL (European) guidelines for people with HCV and cirrhosis. 12 weeks of sof/dac (without ribavirin) x 12 weeks or sof/rib x 16 weeks are the two recommendations for G2 so it seems your doctor is in keeping with the guidelines.
The EASl guidelines came out a year ago and the field is moving so quickly so I'd personally feel more comfortable with 24 weeks of sof/dac but if your insurer only offers 12 then it does seem to be in keeping with the evidence base.
Pablo
Hi Ruby,
Glad to meet you - a big welcome from me.
Interesting, are those your ONLY choices (based only on your insurance provider coverage) to get either sof/riba, or, sof/dac?
As GT 2, a prior peg/riba relapser (2010), and now a fibroscan showing 22kPa - were these the ONLY drug combo's you and your doc were able to consider? Is it all boiling down to what drugs your insurance provider is willing to cover??
If so, 24 weeks sof/dac would be my choice, just based on your 2010 history, your current 22 kPa, and recent history of having low platelets this year, and, my prejudice against riba - I hate to see anyone dealing with the side effects from riba if and when they occur.
I would have another chat with your doc (if you could), and see if he agrees with the premise that (1) firstly, you should have 24 weeks of treatment, period, just based on your degree of cirrhosis, and, (2) find out, IF you and your doc DO have a preference for 24 weeks of ONLY sof/dac (over sof/riba), then whether you and your docs preference could influence/override your "providers" approval of sof/riba only, and, (3) whether there is any "other" drug choice for you, such as the sof/velpa or sof/velpa/vox that Tig mentioned to you.
Your provider may well come back and "first" offer you sof/riba, but, if you and your doc think it best you be on sof/dac for 24 weeks, or suggest some other combo, then that "might" affect what drugs you DO get in the end.
Leave no stone unturned. Your treatment choice is important (if you or your doc get any say in the matter). We all want to you have the best possible drugs (given the circumstances), and, regardless, even if you do end up having to do riba this time around - with sof on your side, and a long course - you will kill it.
You'll get it this time!
C.
Greetings I am glad you are here.
Can you please clarify?
Solvardi/Ribavirin I am aware of and have read the trials. But are you sure the other is Solvardi/Daclatasvir ?
Do you by chance mean Daclatasvir plus Sofosbuvir?
I am not aware that they mix Solvardi/Daclatasvirin a treatment regiment.
Please excuse my questioning. Thanks!
JimmyK
Lady's and Dragons--- LETS GET READY TO RUMMMMMBLE!!
In this corner we have Ruth- armed with the latest in DAA treatment drugs
And in the opposite corner we have a tired worn out old despicable dragon that doesn't stand a chance against your new arsonal of weapons of mass destruction.
YOU GOT THIS ONE IN THE BAG
RC
Welcome Ruth, we're glad you're here!
The DAA's will put that Dragon down for good ... and Tx will be very much easier this round, guaranteed!
Do settle in here, we're just a big family and now you're part of it, welcome.
Feel free to ask for help in using the site, we do have some tutorials that should help.
Once you get settled in, we can point you in the right direction for those.
Please do keep us posted on how things are going, the more you keep us in the loop, the more we can help you through it all.
Take Care and Be Well,
Dave
Hi Ruth and welcome to the forum. The options today are so much better. Hopefully you can avoid the RIBA. The new DAA's have such great results. Best wishes on round 2. CC
No news as of yet on which treatment will be approved but I do believe in perfect timing so I'm not concerned. To be honest, I love the summer, it's my favourite season so if this waiting game extends a little longer that's ok with me :)
I had the Fibroscan last week, it was similar to an ultra sound and took about 5 minutes believe me it was a cake walk compared to the liver biopsy I had in 2009 UGH! I received my results right away too! Fibroscan results 22.0 proving the dragon is fully at work.
The last time I started treatment I can say I did it out of fear and truly had no idea of what the virus was all about nor did I understand the side effects of the peg/riba, I with my rose coloured glasses I believed the "flu like symptoms" as reported. :) Looking back, was I duped lol
This time I am being pro-active. I have started on Essiac along with my other supplements getting as strong and healthy as I can be pre-treatment hoping it will help with my blood and other issues that may come along. Docs don't like to hear about the herbal supplements but that's my route of choice. (the supplements I am taking are not in contradiction to either therapies that are being considered) This time I am knowledgeable and acquiring new information and getting into the "positive" mind set which I feel is a huge key to this. I sound all tough, like I have it all together lol
I believe this virus can be beaten and I am going to do my very best to make sure that happens! If I never hear the words "viral load" again, it will be too soon :)
Hang in everyone...your in my prayers :)
Hi Ruth
Welcome. Tig and Syd have given good advice. If you could get sof/dac for 24 weeks that would be the ideal, and if you could tolerate ribavirin for the full 24 or even 12 weeks that will push your SVR chance closer to 100%.
But sof/dac without ribavirin is still very good. The rib would just add a couple of percentage points to the chance of SVR but is mighty unpleasant stuff, as you'll know.
Your insurer you may just want you to have 12 weeks sof/dac for financial reasons and that gives you a goodly chance still, but 24 would be better if you have cirrhosis.
If they say you can only have sof/rib then insist on 24 weeks.
Pablo
Welcome Ruth,
Glad you have options today! Far cry than we did years ago. I had the same experience on the peg + interferon. Keep us posted on which one they decide upon and know you have a hist of suport here.
wendy
Hi Ruby Red,
there seem to be so many combinations of these drugs and my own knowledge is strictly anecdotal.
i am so sorry that your first round of treatment was unsuccessful. Interferon had harsher side effects than RIBA though didn't it? Maybe this round will be easier whatever direction you take, without interferon.
I too am G2 and have just finished 24 weeks of Sof/dac with RIBA for the first 12. I didn't take RIBA for the second 12 weeks as it messed with my head and body, of course I sort if regret it now. I was virus free at the end of treatment but am still in the holding bay to see if I am really cured.
Whatever happens, I hope it happens soon for you as my cirrhosis turned into decompensated quite fast and the symptoms aren't good. Try to get 24 weeks if you can - I think they try to fob you off with 12 because of the cost but cirrhotics don't respond as well as people with less damaged livers. My last 12 weeks of Sof/dac were basically side effect free.
Take care.
Syd
ps, as you know RIBA does make you tired but your anemia should be monitored and the dosage adjusted accordingly.
Hi Ruby Red,
Welcome to the forum :D
I am curious as to why the Doctor if he can provide Daclasvir would even consider Riba? Could you not push for the latter if it is available?
I had Riba last time, and it worked too hard and fast on my body and so they consider me Riba intolerant. I also read they don't recommend Riba anymore for GT2 nor 3 as it is less affective compared to the new DDA's and causes a lot more problems with extra testing, side affect control etc.
It seems very unfair to make you go through Riba again. It is worth a try at least to question his choice, as obviously he can access the other meds.
Thinking of you!
No, I haven't heard of switching from Riba to Dak mid treatment, but they're trying new things all the time. I have heard of people taking Sov/Dak/Riba and stopping Riba during treatment. It's always possible, depending on your weight and doctor, to reduce the Riba if side effects become an issue. It's always best to keep your dose as high as you can tolerate, but again, that's dependent on your lab results, and your doctor. GT 2 is responsive to your protocol, and I have little doubt that you'll do well. Ribavirin is a very effective medication, but has some side effects that we'd all prefer to avoid if possible. You can do that by keeping adequately hydrated, that's so vital. I'm sure you're aware that it can affect your mood, bring on some anemia, which may present itself as shortness of breath and fatigue, all part of the process. Stay out of the sun and whenever you're outside, cover up, use sunscreen, a hat and good glasses. That stuff will make you photosensitive, trust me, I know! Sunburn city, my head got fried cause I failed to wear a hat. Florida sun in the summer is nothing to play with, live and learn, ha!
Thanks, Tig
This explains what I thought about Dac vs Riba. for now, I am hoping to take the $6, 000 that I have "saved" by taking Riba and go on a pilgrimage Santiago del Compostela.
But I agree the DAC would have been better than Riba. Dr told me if the Riba was too hard, he could switch me to DAC
Have you heard of switching in mid treatment?
Welcome, Ruby Red,
This forum helps a lot. I am in the middle of Solvadi & Riba treatment. I too the Riba & interferon in 2007 and remember well being so tired.
I was very anxious about starting the RIBA, when I discussed with Doc and asked him if there is a big difference in the actual results since the DAC would have cost me $2,000 a month. He said to go on RIBA and it wasn't worth the $6,000.
The Riba is challenging & somedays (like today) I stayed on the couch, I am pacing myself not to do the usual long days that I have and drinking lots of water (96 oz). Low energy and foggy brain (my friends tell me to rest but what I am experiencing is more like inertia. But I felt I had to at least try as $ 6,000 is a lot of $
Some days I feel like my old self and after resting today, I think tomorrow I will rebound. The good news is that the virus is undetectable at this point. Staying focused on the goal.
Good luck and I am grateful to have folks to share this journey.
Hi Ruth,
Welcome to the forum! The wait begins huh? That's often the hardest part of this, waiting and waiting for someone to make a decision. The good news is you're a GT 2, that's one of the easier geno's to treat because it responds to these new DAA's well, but left untreated can be just as troublesome as the rest. I'm sorry you've progressed to cirrhosis though, but even then your SVR rate is very good.
Since you have past treatment history with Peg Int/Riba, and cirrhosis, if you retreat with Sovaldi and Ribavirin, you could be prescribed either 12 or 24 weeks, I would want 24 if I could get it approved. The difference in SVR rates ranges from 88-92% and the Sovaldi/Dak combo for you according to trial SVR estimate is in the low to mid 90 percentile for 12 weeks of treatment. The Daclatasvir would be worth considering, it delivers fewer side effects and with Sovaldi, would be once daily dosing. Ribavirin requires twice daily dosing, combined with once daily Sovaldi. If you had trouble with anemia last time around, the Daclatasvir may be something to speak to your doctor about. There are also trials underway in Canada right now that may still be available with Sovaldi, Velpatasvir w/wo GS9857. We have a fellow Canadian that is finishing up that trial and has done very well. You might ask about that. Your doctor may be able to shed some light on that. Location is important as well.
I expect there will be others along shortly to welcome you to the family. We all look after one another and there is usually someone around all the time. If you have any questions, please don't hesitate to ask. I'm glad you're here! It's a great time to treat and you'll be free of this once and for all. We'll be here to help, count on it!
Hi Ruth, Welcome to the forum. Glad you found us, we can help. I"m with you on the - let's not do RIBA again- If I were you I would push for the Dac-sof. The side effects of this combo are nothing compared to RIBA. Let's hope your fibroscan comes in under 8. We'll keep an eye on you- Keep us posted. RC
Welcome to the forum Ruby Red,
we are glad you found us and I assure you there will be many people along shortly to answer any and all questions you have. There are many different protocols that people have been on and they can best answer from their experience. There are also sections for the different treatments ..
eg
http://hepcfriends.activeboard.com/t61508964/the-sovaldi-riba-train-is-now-boarding/ that will lead you to them.
Once again, welcome and you're right. This is a virus that will be beaten.
Take good care
SF
Hi everyone :)
A new member here and I am looking forward to receiving info and hopefully being able to give some information to help others.
Looking at going into treatment this month....the stale is waiting hear which treatment I will be approved for. The meds are between Solvardi/Daclatasvir OR Solvardi/Ribavirin, apparently this depends on my insurance provider
I have been on treatment before in 2010 (pegatron), after 24 weeks the virus decided to replicate.
I'm a GT2, I was diagnosed in 2007 and to be quite honest I had no idea what Hep C even was...so started the journey. After treatement in 2010 I decided to not take any further steps, I was tired. I have recently found out through other tests that cirrhosis has developed (I am having a fibre scan this week to see what step the cirrhosis has developed into.
This past year it has been found that I have very low platelets, white blood cell count and a high RDW count. Due to this, I am concerned about he ribavirin as it made me anemic last time around.
I am wondering if anyone is experiencing this and of course I so welcome any feedback.
I want to say I do wish everyone the best of health and truly believe this will be one virus that will be beaten!
PS. I will definitely will need some help using this site ...I will thank you in advance