Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Well I saw my GI to discuss my best next tx option. He asked me to come back in 2 weeks because he is going to a seminar next wk in order to learn more about the new meds. He hasn't prescribed Solvadi to any patients yet & he told me that he wants to consult with other hepatologists about the best course of tx for a geno 1a non-responder like me who has failed tx 2 times already. He is aware of the Gilead combo that is supposed to be approved later this yr & he thinks I can wait for that but he also knows I am anxious to get rid of this virus once and for all. He offered 24 wks of solvadi with ifn & riba. I told him I do not want IFN again particularly since I am obviously resistant to it & asked instead about Solvadi & Olysio with or without riba. I showed him the results of the Cosmos study...thankfully I printed up some info. that I took with me & he is going to look into that. It's frustrating. It's been a hurdle every step of the way. Back in '99 I had to convince my doc to run the blood test in order to be diagnosed because he didn't think I had any of the risk factors to justify the test even though I had rec'd a blood transfusion in '83 & also have a tattoo, then I had to find a GI to prescribe appropriate tx & finially I had to jump through hoops & appeal the denial from my ins. to get my tx costs covered . I have changed docs & gotten 2nd opinions during my HCV journey. This GI took over the practice of my former GI & I'd change docs again if it wasn't such an ordeal. I know I'll be treating this yr. but wish I could quit running into brick walls. Sorry, now I'm just ranting.
Yes, you will get treatment and maybe with out the riba too.
I hope you keep us posted. I'm in a similar situation.
dreamerdee, I agree with you that I shouldn't have to educate my docs. I've seen specialists at Tampa Genral where they do liver transplants as well as getting a 2nd opinion at Shands Hospital in Gainesville. Funny thing but the hep docs at both hospitals have referred me back to my local GI since my condition isn't advanced enough in their opinion & I am still getting the appropriate tx each step of the way from my local GI. It's hard to accept that reality especially since I also saw some of the best liver specialists who treated my late husband during his battle with HCV & they had him on the transplant list for both a liver & lung toward the end of his life. Believe me when I tell you that I am seeking the absolute best care that I can get. If I truly believed I could speed up the process by changing docs I would do it but this all takes time & transfer of medical records plus more tests etc. Unfortunately for me I want what I want right now. I know my GI will give me what I need & I may be frustrated but I also appreciate that he wants to ask for additional info, that I may not understand before he puts me on a tx plan. My GI was well aware of Solvadi & he knew that it was going to be approved in Dec. My GI protects his own practice as well & tries to follow FDA guidelines but I'm asking for off-label & wanting to know if it will work in my particular situation. If I have the Q polymorph thing & if my geno subtypes are not as responsive to the new inhibitors then maybe I have to wait for Solvadi/Ledispavir so I won't have to do IFN/riba again. It's all part of the decision making process & I am struggling with it all. My GI also wants a little time to pursue off-label payment from my ins. co. If, heaven forbid off-label tx didn't work would my ins. pick up the cost when the "Gilead nuclear bomb" is approved later this yr since it also contains Solvadi? Good question. I am disappointed that I didn't get any meds today but I'll know more in a couple of weeks. I'd like to feel confident in my docs but I've learned I also have to be my own best advocate.
I take it you want to go ahead and try the Solvadi & Olysio combo, right? As you know so well, there are no absolutes with this disease and sometimes a hard decision has to be made.
Whatever you choose, good luck to you.
Bob
And, as Trissa01 said, it's definitely okay to rant here. There aren't many people outside of support groups such as this that can understand your frustration but we do understand because most of us have been there and done that.
Because of the fast-changing treatment protocols for Hep C, I tend to understand why docs aren't 100% on top of the new protocols and I also tend to understand why they want to research a bit before putting their patients into something they don't feel they know enough about. But, yes, it definitely sounds like you have been through the wringer while trying to get a plan going to rid yourself of Hep C.
Hang in there and, before you know it, you will be able to put all of this behind you.
Best of luck!!
AND...you stick to your guns!! You have the research and you know people are getting this.... CatMagic's doctor has prescribed it successfully for more than THIRTY people!
I feel confident that he will return form the seminar and prescribe it for you!! HANG IN THERE!
one of the problems I see is that most GI docs do far more colonoscopies and deal with more issues like ulcers and IBS and even colitis, but not much with the liver and HCV.
It's hard to find the GIs who "specialize" in or are even knowledgeable about this area - hepatology - depending on where you live.
see if there are any INFECTIOUS DISEASE specialists anywhere in your ears. That's who I use. I find mine much better than the hepatologist i previously used, who was very good. My ID guy specializes in just HBV, HCV and HIV. probably hard to find one like that.
for what it's worth I'm a 1a who had hcv for 42 years. I was in the clinical trial for inf+riba, and the vl went to zero, only to rebound when i stopped drugs. a few years later i tried pegylated inf + riba and the vl never got to zero
over 2 years ago i did triple with inf riba and victrelis, and went to zero vl within a few weeks and stayed there for the entire 40 weeks.
i dont understand the pharma chemistry, but the third time with interferon worked for me. But its wicked stuff
After I relapsed I had a resistant variant test run. I thought I would find the virus strain resistant to the Protease Inhibitor. Much to my surprise - I had ZERO resistant variants. I did have 14 various strains. My take away was Incivek did it's job - It was the interferon that failed me.
My opinion, if someone failed SOC then interferon is not their friend. Not to mention the horrible side effects with three drugs. And then there is JoeMz20 who cleared on triple. Still, IMO I would fight for the off label combo or wait for the combo drugs to be approved.
You're doing great - success it in sight.
Sure, being me, I'm going to still worry a bit about the Q80K thing - and I won't ever know if I have it - but... this tx is well worth a try - WELL worth it.