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.
I did not clear after 12 weeks of Solvaldi, peg and riba. My Dr. pulled the riba after 22 days saying it effected my platelets to harshly. I questioned his advice, read the insert that comes with the drug which states " It MUST be used with ribavirin or Peg-intron and ribavirin" It did not say, maybe you should or its a good idea, its says MUST be used. I insisted on a viral load check at 35 days. I was clear for the first time since 1999...I was clear...so I followed my Drs, advice. Still I questioned him constantly. He kept me on the Peg-intron and solvaldi. I looked high and low and could not find any clinical trials or any information supporting this path, The peg-intron really hurt me this time. It has never been fun but this time was really kicking my butt. Well...one month after the 84 day treatment I got a viral load test. Its back. I truely believe if I had followed the drug manufacturer's instructions and did the regiment as it was approved by the FDA that I would be cured. I am in cirrhosis and my virus has now been educated to protease inhibitors. I think I'm screwed.
The insurance carriers are caught up in a price war. I changed Doctors and asked for Harvoni PLEASE. He submitted the request. I was denied.
I am afraid I will get liver cancer and die before I get cured. My oldest brother died from liver cancer as a result of HepC. He was in bad shape and needed a new liver. He tested positive or pot and was told he did not qualify for a transplant. He developed liver cancer and died. They showed him.
I am strait, sober, and work out regularly. I pay my Blue cross Blue shield premiums every month. I have fought this disease since 1999. I have done a total of 39 months of interferon based treatment during this battle. The cure is here and I cannot have it. They are going to accept my money and watch me die.
The insurance carriers are caught up in a price war. I changed Doctors and asked for Harvoni PLEASE. He submitted the request. I was denied.
I am afraid I will get liver cancer and die before I get cured. My oldest brother died from liver cancer as a result of HepC. He was in bad shape and needed a new liver. He tested positive or pot and was told he did not qualify for a transplant. He developed liver cancer and died. They showed him.
I am strait, sober, and work out regularly. I pay my Blue cross Blue shield premiums every month. I have fought this disease since 1999. I have done a total of 39 months of interferon based treatment during this battle. The cure is here and I cannot have it. They are going to accept my money and watch me die.
I don't know why he took you completely off the Riba....Mine took me down to 600mg and I was scared of that. So far, so good for me.
I do feel you should fight for your right to treatment and also contact Gilead as people have gotten good responses in help for tx.
We all were guinea pigs at the mercy of our doctors and insurance, and they all did different things with us (but this is our lives)..
I will pray for you and hope you can find a way to get on Harvoni or any new drugs they have out there.....Don't forget the clinical trials too...
Don't give up - keep trying. Post when you need to talk or ask questions.
The good news is that if you fail with Solvadi/ifn/riba you do not have to wait to do a retreatment like you had to do with former meds. Remember, in the past we had to wait up to 2 years after a failed tx for the virus to revert back to wild type. Apparently, this is not the case with Solvadi based txs. Please find a new doctor & pursue tx. You were undetected & your insurer would have bigger expense treating long-term liver disease & liver transplant. Gilead's Support Path is a great resource so get in touch with them as well.
I'm sorry for your loss. I lost my husband to the ravages of HCV & I know it is an ugly thing to witness.
I just keep pestering everyone. Write letters, tell them your story. Sue the damn doctor. Go to the human rights committee if you have one. I spend all my time doing all so I figure eventually it will pay off.
I am sorry this doctor screwed you up but I think you still have a chance. Keep on fighting my friend. Hugs.
Markkk first, I am sorry that you did not clear. I know that feeling of treating and not clearing.
I am sorry you lost your brother to hcv & its dirty damage.
Do not give up, get another doctor, keep applying for treatment. The fact your brother had liver cancer should keep you high on the list. Please do not despair, keep pushing. We're all hoping to hear of progress on your case.
Feel free to vent your frustration as much & as often as necessary, you need to!
"Anthem selects Gilead as primary supplier of hepatitis C drugs"
Anthem is my insurance so I called them. They said they need to hear from my Doc. so I copied the full article and posted on their website used to communicate with patients. Within 30 minutes I got a phone call from a nurse who had talked to my Doc who said he told her to re-submit the request for 24 weeks of Harvoni. So I am very pumped that things may be in motion. And I am also pumped that rirbavirin is not required in this treatment.
Thanks to all of you for your support and comments.
My condolences to you regarding your brother's passing.
So when the doctor had you discontinue taking the Riba, was it because your platelet level was seriously low? How low are we talking about? also, was your red or white blood count extremely low too?
If you did have other problems with your blood besides seriously low platelet count , did he treat the problem with any rescue drug specifically used for either low RBC or WBC by any chance? If so, what was the name of the drug? was it Procrit or Neupogen? If not then please disregard.
Now, another important question is how long ago did you finish the Sovaldi? Even though one doesn't have to wait 2 years as in the past in order to go on Harvoni, there is a waiting period nonetheless that is required the last time i checked. Then again, everything changes with something new like Harvoni so you need to find out whether or not there's a restriction or not.
You mentioned that you're cirrhotic but you didn't post what stage or grade you are. I ask this because if you're not stage 4 or ESLD which is End Stage Liver Disease then you have much more time than you think so if you could post what stage you are then I can go into further details.
It reads as though you're having a hard time not knowing what the future holds and that's perfectly normal as I can tell you from first hand experience. I ave recently made SVR after fighting ths disease since 1986 when I was mugged in a subway station in Queens NYC. I also was on of the first patients to be screened for HCV back in 1991 and on the interferon mono-therapy back then because the medical establishment wasn't yet using Riba with Ifn and ever since that first tx, I was on a total of eight other tx's of either mono-therapy or the combo tx for a combined total of 9 times since back then.
And along the way, my liver went ESLD and eventually decompensated but by then I was already listed and received the gift of life over 17 years ago so i know what you're feeling as it relates to the hopelessness you were feeling when you found out that you couldn't continue and the tx failed you and not the other way around mind you. And even after experiencing and surviving the transplant, the virus returned and became active again because a very small amount of it was hiding and came out starting to attack my body again. So I was immediately put on another round of tx also only to be disappointed time after time again even though a couple of times I was SVR for over two years twice only to relapse again and again or taken off because of such adverse sides that put me in life threatening conditions.
During this time I also developed a rare form of cancer caused by the very drug I was taking to weaken my immune system called Tacrolimus otherwise known as Prograf. Post transplant lymphoproliferative disorder (PTLD) is the name of the malignancy. The majority of PTLD events appear related to Epstein Barr Virus (EBV) infection. So even though it's currently in remission, it could come back again if I'm not vigilant. Nonetheless, this wasn't the worst of the potential conditions many post transplant survivors can develop when on Prograf for their immunosuppressant.
The most difficult condition was the onset of diabetes which was supposed to happen very early after my transplant which is usually 1-3 years afterwards. I got it after my 10th year post transplant which was very unusual but, I got it under control and thanks to really hunkering down on my diet if all goes well, I will be insulin free once March rolls around of this year because I'm down to 8 units from @ one time being 80 units twice daily so a day @ a time it gets better.
I was then put on what was called long term low dose therapy which was not normal and was really experimental which was applied to mostly post liver transplant survivors and I truly think that even though the tx destroyed my body to the point where other diseases started to develop as an indirect result of being on interferon for so long. And yet for some mysterious reason my liver wasn't being damaged by the virus and the virus wasn't replicating as it should especially with post transplant survivor.
Due to the fact that our immune systems are intentionally weakened, and fooling our immune systems into thinking, or rather reacting passively to the grafted organ instead of attacking it if the immune system was normally reacting towards it as it should because it would then consider the transplanted organ as a foreign and attacking entity.
This all equated to my transplanted liver not as damaged as it should be from the virus because something was thwarting the virus from going all out against the grafted organ and I was very fortunate that this was happening because when they did one of the last biopsies on me, my liver was fibrotic @ stage 2 instead of being already cirrhotic.
I also tried to get into clinical trials to no avail because of one exclusion or another and I too was becoming disillusioned and depressed but I never quit even though I lost my support group here temporarily because of some stupid crap that went down and it probably was the best thing that could have happened to me because shortly afterwards I got into a trila for cirrhotics and post transplant patients and Gilead was testing what is now called Harvoni then and after my 4th week I was not only SVR but also totally undetectable with both types of tests.
But I had to complete the 24 weeks and I was walking on air and then anxiety started to slowly creep back into my psyche because I still had another 24 weeks before they could officially state that I became SVR and in their opinion cured. I'm still SVR and I'm so grateful but I wouldn't have got to this current condition health
wise had I decided to totally give up and give on!
I'm still suffering from the long term affects of being on interferon for so many years and I still have a long way to go before I reach a point in my life where i can even think about getting back to doing what I used to do for a living and realistically it would probably be the worst mistake if I even attempted to do so so my plans will be taking on a very different track although it will be interesting to me nonetheless and refreshingly new as well.
I'm happy that you decided not to give up or give in and are back on your way down the road again in your journey to eventually be cured of the virus and if you decide to continue to abstain form anything that could delay your liver's eventual healing itself -yor future does seem bright indeed!
At the end of the month I will be going through a surgical procedure in order to drain my left lung from built up fluid that's been trapped in there for over a year or so and then to hopefully re-inflate my partially collapsed left lung so that I could shortly be weaned off the oxygen that I'm currently on and require in order to avoid a hospitalization once again.
This is something I really look forward to successfully being able to breathe on my own once again because ever since I had to be on O2, I have been a prisoner in my own apartment except when I go to seem y PCP, Hepatologist/transplant docs, and my lung doctor or when I go to the lung rehab center. And the only time I don't need to be on O2 at all is when I'm in the hyperbaric chamber literally being infused with oxygen inside a certain atmospheric pressure and once my time is done inside, I must immediately go back on assisted O2 which kind of drives me frustrated but only for a very short period of time.
Wow! I didn't realize that I typed so much! Sorry and excuse me for any typo's! Anywho, hang in there Markkk! Your ship will arrive soon enough pal. Bless you.