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4896357 tn?1360674504

I'm Ready To Treat Again If Possible, Need Help!

I've been off this site awhile. I had to try to stay focused on positive things. Now a lot of things have changed and I'm no longer up to date. I have chronic hep c type 1a. I think I need to treat soon as I am having symptoms of fatigue and brain fade. I txed with peg-interferon/ribivirin/victrelis from approximately 2-1-13 to 8-1-13. I stopped tx when my 24 week VL test came back elevated. I never achieved und but did respond with very low numbers. Unfortunately tx failed. Now I am trying to get assistance getting sovaldi through the "support path program". I should be able to get the interferon & ribivirin through the "act program" as I did before. It was my understanding that my best tx approach would be sovaldi/peginterferon/ribivirin for 12 weeks. I can tolerate these drugs for that length of time. Now I see patients here taking sovaldi/olysio. Assuming that I am able to obtain these meds, in your opinions, which way should I go for the best chance of cure? I am seeing my Dr. this Friday. I am trying to educate myself now on the new txs so that I can discuss this with my gastroenterologist while knowing what I am talking about. Also, any help in how to obtain sovaldi without insurance would be appreciated. Thank you. I love you all.
22 Responses
Avatar universal
      the one pill has both sovaldi and ledipasvir.
7469840 tn?1409849436
A good place to start is the Sovaldi website. They do have some support available I believe. If you in the U.S. and can get Obamacare, that would be good too. The VA is also starting treatment too if you are a vet. I know there are other on this forum who can give you tips too.
http://www.sovaldi.com
1504401 tn?1387569461
My GI said geno1's newest and best is coming this fall. My second try here, with Solv/Riba , successful thus far, and it has a 95% cure rate. But I am a geno 2.   Personally, after the 48 wks of Int/ riba were unsuccessful (i, as others, understand your pain, brother), I am glad I gave myself permission to wait it out the extra yr or so, and to wait for a tx with a high cure rate this time round, rather than put my body through a questionable tx. I see doc again next week and will compare notes, if you wish.  I asked doc because my Bestie failed her geno1tx with int/riba, and now she decided to wait a few more months for the Best tx. Sure others will weigh in with better info. Take care,  Janee
4896357 tn?1360674504
Sandi, Gilead's web site led me to the support path program. I've printed the forms to fill out by my doc and myself to apply for free sovaldi. I am not a vet. There were no acceptable programs for me under the ACA so I remain without insurance.
Janee, So there is yet another drug expected this fall? I didn't know that.
All, in your opinions which current tx would be best for me? Is sovaldi/olysio tx only the two drugs without interferon or ribivirin? I was not even aware of olysio until today. What are the current best drug combos for a 1a prior txer? (disregarding side effects) Thanks again.
7469840 tn?1409849436
I am genotype 4, so my treatment is different than yours. I know that not all the states are making getting insurance easy. Good luck.
683231 tn?1467326617
Hi Carl

The American Association for the Study of Liver Disease (AASLD) has released "Recommendations for Testing, Managing, and Treating Hepatitis C" PDF it is updated as new information is released and changed. They have the recommended treatments for the many different situations we hep c patients have. You should find many answers here:
http://www.hcvguidelines.org/sites/default/files/full_report.pdf

One important consideration with what treatment you should receive is the current condition of your liver. Have you had a recent biopsy? Do you have cirrhosis? If you have cirrhosis are you compensated? This will have an impact on what is the best treatment for you.

There is a new drug hopefully to be approved by the FDA this fall. It is a fixed dose combo pill of Sovaldi with Ledipasvir. I pill a day for 12 weeks (possibly 8 weeks treatment duration yet to be determined). The ION clinical trials have been having great results with GT 1 patients even with compensated cirrhosis.

I have had Hep C probably since 1977 diagnosed in 1989. Treated 3 times, null responder, GT 1a, diagnosed cirrhosis 2008. I just finished week 4 Sovaldi Olysio and am waiting for my viral load results from today's blood tests. Just 8 weeks to go.

So read up on the information in the report and see your hepatologist and find out what your Dr thinks would be the best treatment for you.

Good Luck,
Lynn
4896357 tn?1360674504
Thank you. I will study that info. I have not had, and cannot afford a biopsy. My business has crashed and I've racked up so much debt that I am barely keeping my head above water right now. My previous tx added another 10 g to my debt just for the bloodwork and initial testing and CT scan. My only symptoms are fatigue and brain fade but I do have more energy as the weather improves and I am now 60 so it may not even be related but in any case I need to get rid of this virus that I have also had for several decades without knowing it. It's sad to say but a lot of people here have the real life experience and know more about hep c and the txs than my gastroenterologist. My doctor works with me on costs and I cannot afford to shop for a new doctor will not do that. Therefore I need to educate myself on which tx route to seek now. I'm trying to eat at least somewhat healthy and not drinking, although I did have a few drinks last New Years Eve. Not a drop since.
Avatar universal
You can talk to your doctor about sovaldi/olysio combo, but it is an "off label" prescription.  Both sovaldi and olysio have been approved by the FDA, but in order to have both of them together, your doctor would need to prescribe them together, and generally speaking I believe your doctor would need to write a letter stating that you are "ineligible for interferon" (i.e. you have retinopathy due to interferon or you had severe adverse reactions to interferon or you an interferon non responder).  However, if you don't have insurance, and you won't be submitting your request through insurance, your doctor may not need to prove that you are interferon ineligible.  The cost for both drugs is quite high, especially without insurance.
Since you failed triple tx last year, chances are another treatment with interferon may not be successful.
I think your best course of action would be to 1) try to get sovaldi/olysio, or 2) wait for sovaldi/ledispavir as flyinlynn said in the late fall/end of the year.
However, the cost of sovaldi/ledispavir is likely to be very high as well.  I would definitely research the assistance programs with both drug companies.
Advocate1955
4896357 tn?1360674504
Thanks again. Good stuff. This site has a ton of good info: http://www.hcvguidelines.org/sites/default/files/full_report.pdf  Thanks Lynn. That should be pasted to the top of this forum!
4896357 tn?1360674504
I studied up and caught up! The best tx for me is sovaldi & olysio with or without Ribavirin for 12 weeks. Are the new drugs coming in the fall more effective? How does this Q80K polymorphism fit in? I bet the test for that is expensive too. I see the doc at 6:30 tomorrow AM (EST).
Avatar universal
The sovaldi/olysio combo is supposed to be pretty effective for previous non-responders, G1, I think perhaps about 93% effective?  The sovaldi/ledipasvir is supposed to be even more effective, I think perhaps 99% effective?  These are just approximations on my part, from my recollection. You can look up the most recent trial results for both.  The sovaldi/olysio combo had great results that were just presented at EASL in London last week I believe.  Sovaldi/ledipasvir had great results too, and were part of the data submitted to the FDA in February.
Advocate1955
Avatar universal
Here is a link to my journals where I posted the latest results on the sovaldi/olysio trials:
http://www.medhelp.org/user_journals/show/1058321/EASL-2014--Final-Phase-II-data-from-Interferon-free-COSMOS-Study?personal_page_id=2242526

Advocate1955
Avatar universal
Here is a link to my journals where I posted the latest results on the sovaldi/ledipasvir trials with previous non-responders.  The rate of SVR was 94-99%:
http://www.medhelp.org/user_journals/show/1057716/Ledipasvir-Sofosbuvir--94-99-SVR-rate-for-HCV-G1-previous-non-responders?personal_page_id=2242526

Advocate1955
4896357 tn?1360674504
Thanks for the help. I saw the dr this morning. He said it will be hard enough to get the sovaldi for free and near impossible to get both sovaldi and olysio. We filled out some paperwork and if I can get the meds we will be going with sovaldi/peg-interferon/ribavirin for 12 weeks. That's where I'm at and it will be at least a month before tx starts if I get the drugs. I will be more active on this forum again since I've gotten over the devastating failure of triple therapy.
317787 tn?1473362051
Hey there! Great to see you here..  I am glad your doctor was able to help you out.  This is great information!

I can understand the devastation of tx failure, I was there in 2009.

My best to you
Dee
4896357 tn?1360674504
Thank you, Dee. You are a sweetheart!
Avatar universal
        since funding is your biggest barrier, waiting for sovaldi & ledipasvir may be your best bet.  it is one pill a day, for 12 weeks.  you will only have to deal with gilead for help.  with this tx, your costs for labs, and followups will be minimal.  

          i remember your last treatment was problematic, with dose reductions and need for rescue drugs.  you wont have to deal with that again.  best of luck carl.  
4896357 tn?1360674504
Yes, I had side effects but 12 weeks will be easy. What happened was that I needed neupogen and by the time I got approved it was too late and I skipped a shot. I did discuss the ledipasvir with my doctor and he wants to try sovaldi. At least there may be yet another back-up plan! I was feeling pretty hopeless for awhile.
4896357 tn?1360674504
Wow! One pill a day. :)
Avatar universal
Carl,
Actually, the problem that likely caused you to fail on triple tx with incivek was probably not because the neup came late and probably not because you had to miss a dose of interferon.  Having low WBC and missing one shot of interferon could have played a small role, but the real issue is the combination of your genetics and your Hep C virus.  Genetically, you are probably one of a small percentage of HCV G1a's who, like my husband, do not respond well to interferon, therefore, interferon cannot sustain your viral response to the other two drugs (the PI and the RBV).  In terms of your particular strain of HCV, your virus is probably particularly resistant to treatment.  So, in my unprofessional opinion, your best bet is to try to wait for a non-interferon based treatment.  If you are unable to get sovaldi/olysio due either to cost or because you are not yet Cirrhotic, then if I were you I would wait until sovaldi/ledipasvir becomes available hopefully sometime shortly after October, 2014.  Being treatment experienced, prior non responder, G1a, and doing Interferon, sofosbuvir, and Ribavirin, just doesn't seem like a high enough likelihood of success, in my honest opinion.
Advocate1955
Avatar universal
hi Carl iam 55 yrs old I was diagnosed in 1997 I stated with ribavirin and 3 shots a week of interferon for 48 wks FAILED!!! a year later they came out with pegalated interferon 1 shot a week and interferon for 48 wks FAILED!!! now 15 yrs later had bllod work done and my liver enzymes were high my family dr sent me to an infectious disease dr. he told me about the new treatments, I told him I didn't want to be on interferon but he insisted that by adding the sovaldi it had a 95% success rate so here iam I started april 12 doing well so far the treatment with out interferon the insurance co denied what ever you do don't give up!!!!!!
4896357 tn?1360674504
I think I was called a "partial responder". I did knock the virus down to almost und but it came back. I need to try whatever I can get right now. If I fail again then I will treat a third time!
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