Hi everyone, Today I'm feeling a bit down and as if the rug has been pulled out from under my feet! A month ago my liver nurse put me forward to receive a course of Harvoni for Hepc. She was confident I would be given an 8 week course starting end of March. Last week the bad news was that only half her referrals had made it to treatment and I no longer qualified as the goal posts had moved. To now get treatment I needed a Fib4 score of 2, and mine was 1.98. And the drug of choice was no longer Harvoni but AbbVie's regime plus Ribavarin, unless my genotype turned out to be 1b. Then suddenly a week later it was all change again as my latest bloods had taken me over the magic number 2. However I am a bit hacked off, to put it mildly, that I've now got to take Ribavirin for 3 months , more than likely, once my genotype is reconfirmed as 1a.
I'm under the Newcastle Health Authority. Has anyone else experienced this recently. . Cheers beeeater.
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I was given Harvoni with no Ribba for 12wks and i have cirrhosis. .i am genotype 4..they do say in most cases now Ribba is not needed.
My friend done the Abbvie's and Ribaverin for 12wks and got a SVR she was genotype 1..this course has an almost 100% success rate for genotype 1..i know you hoped for Harvoni but I'm sure you will get through it and hopefully get your SVR at the end.
A similar thing happened to me...in as much as I was told I would be put on Harvoni...but when the time came, I was told I would be placed on Abbvie and ribivarin. Even after my liver specialist nurse argued my corner with the specialist and commissioners who decide what drugs/treatment I would be put on, that decision remained. My Fibroscan score was 11.5 which is borderline cirrhotic, I also have a skin condition.. So, I argued that as I was borderline cirrhotic not actually cirrhotic, did not have any decompensation events, a viral load under 6 million that Harvoni was a better choice for me..also I am over 65...and felt the Abbvie Pak and Ribivarin would be tougher on me with same outcome as taking Harvoni. And I have , Psoriasis /lichen schlerosis... one of the tablets in the Abbvie Pak was likely to cause side effects related to my condition.
(2% patients have to stop treatment due to side effects with Abbvie+ribivarin regime. Whereas, I felt the Harvoni was a safer choice for me...also, I have an issue taking some large pills as I have a strong gagging reflex. No one has ever dropped out of Harvoni treatment regime due to side effects from the drug that I know of.
My liver specialist nurse called me back and had me speak on phone with one of the actual liver specialist determining my treatment. After I told them as a patient I would prefer to be put in Harvoni for the reasons above,,,they said they would let me know their decision. Later the next day, I was called back and told I would be placed on Harvoni no ribivarin. I am genotype 1b
Having said all this, if you do take the Abbvie and your side effects are managed (including ribivarin )you will have a very good chance of clearing your HCV. I wasn't sure if you are to be treated with Harvoni (& ribivarin) or Abbvie Viekra Pak (& ribivarin) .? I can understand your frustration at being messed around.
Did they explain why they felt you needed to be placed on the ribivarin? It improves your odds to clear the HCV but, depending which figures you look at and your genotype...those increased odds vary by up to 1.5%...maybe slightly higher...to be honest, if you have a genetic variant that is resistant to treatments, whether you take ribavirin or not will not change that. But it reduces your red blood cell count...less food for the virus to feed on and replicate...in simplistic terms. It causes fatigue and your haemoglobin levels will have to be monitored closely. Everyone is different how they respond.
When I went in for my first appointment pre-treatment, they had me down to take ribavirin with my Harvoni on my prescription form for evolution. I said I did not want to take it and thought we had agreed to that. The drug was crossed off the list and I am on Harvoni only.
I have not had any side effects at all, and feel very well after 8 weeks. Whether I clear the HCV is another matter, but I remain optimistic that I will be one of the 95-98.5% (depending on which figures you look at) that clear the virus.
If I do not clear HCV, it is, in my opinion, more likely that I have a genetic variant that is resistant to treatment rather than that I did not take ribavirin. And I have a strong feeling that I would have had side effects that may have stopped me from continuing treatment had taken the Abbvie Viekra Pak + Ribavirin.
As a patient, it is important to be well informed to help those making medical decisions regarding our treatment. I think they often just look at your genotype and Fibroscan score then make a routine decision...you may have all kinds of issues and concerns that will affect your treatment outcome that they are not aware of.
I hope this long winded message helps in some way. At least we are slowly being treated and it isn't interferon with ribavirin for 48-52 weeks with very poor cure rate for genotype 1a/b. Good luck!
Hi there, thanks so much for your supportive replies. That is very ,very useful to have so much information from you Art4949. I can see that I am going to have to fight hard if I am going to have any chance of getting Harvoni. At the moment it is 12 weeks of the AbbVie regime plus ribavirin if I am geneotype 1a, that I have been offered. Genotype 1b does not have to have ribavirin added to Abb Vie and is meant to be a 100% cure rate. Although I am supposedly !a I am being retested, as it was a very long time ago this was tested for and my liver nurse said that quite a few have turned out to be b, when they were thought to be a and vice versa.
Unfortunately I do not have an auto-immune disease or other mitigating factors, apart from age. I am 62, However as long as I have had hepc I have had a big problem tolerating any medication for any length of time and get severe side effects. As I have got older and had health issues I have been prescribed various things and always ended up doing without rather than taking them, apart from a couple of
antibiotics.
Knowing this I am very keen not to start a hepc treatment I can't finish, which would be a silly thing to do , with drug resistance, then a problem. I do feel backed into a corner over this. It would have been so simple just to have done Harvoni. My son is in India at the moment and it is very temping to make that big journey and try and get it prescribed there, but also rather a daunting prospect.
Hi, I would take treatment while you can. I've been on interferon twice, once with and once without ribaviron. I have dermatitis and the itching was incredibly bad, but I wasn't cured. Last summer I was offered interferon plus ribaviron and a third drug, due to start in October, then November. That turned into being offered viekirax and exviera with ribaviron with a start date in February. That start date turned to March, then I was told as I wasn't sick enough for treatment. My fibroscan was 7. I've had hep c for 30 years and have chronic pain in my right side and poor sleep. The register managed to get treatment for me three weeks ago. She also said she wouldn't be able to get treatment for me now as restrictions have become even tighter. Only 11 people in our area Bristol, Bath and Severn are being treated a month, despite NHS promises of treating 10,000 people this year. I'm now taking viekirax and exviera without ribaviron as I'm the easier type of genotype 1 to treat. In two weeks my viral load has gone from thousands to 56. I'd strongly recommend you accept whatever treatment you can before it's taken away. If you need the ribaviron a few months of itching, however bad it is - and when I was on it it was bad - the end result is a strong possibility of a cure and without losing your hair (I did twice) and all the other side effects of interferon. For the first time in a decade I actually feel like I have some energy.
Hi Marion, thanks for your very informative reply. I have accepted treatment with Viekira Pak plus ribavarin now, due to start next month. It was crazy during the last month. My liver nurse rang me a few days after I posted on here saying harvoni was back on. However this only lasted a couple of weeks then it was changed back to Viekira Pak again. My fibroscan was 6.9 and she did a calculation called Fib4 to see if I was ill enough for treatment. This was alt plus ast plus age plus fibroscan. Previously I was under 2, the cut off point, but my alt and ast worsened so that I just scraped in at 2. I realise that I am lucky to be offered treatment although wish it wasn't with ribavarin. Are you having any side effects without ribavarin or is it all good. Great to hear you have got energy back.
I had a slight headache and felt a little nauseous the first couple of days but that's gone. These were both very mild, more of a matter of noticing that they were there briefly. I did struggle with insomnia but that might be due to my teenage daughter not going to school. I'm having a strange sensation of being tired but energetic - the tiredness may also be due to problems with getting my teenager in bed at a reasonable time.
I now have a flu but not very bad but it could affect treatment. I'm due for a two-week blood text next week. If it's okay, then I won't need another blood test for a month, but the registar said that the flu could weaken my immune system so they may need to check my blood in 2 weeks instead. So, stay away from anyone with a cold or flu!
The other thing I'm noticing more the last day or two is that my side is achy. It normally has been before treatment, but seem to lessen for a week or so but is now back. However, my blood test results were fine, so I'm not going to worry at the moment.
When I was told that I would be on ribarviran I was told to drink plenty of water to help reduce itching and also to make sure I start moisturising before I start taking the medicines.
I hope you do get your medication next month. In the middle of February I was told I'd be starting 1st March, then a week beforehand it changed. I was then put on a waiting list and had to be available last minute in case not enough sicker people were given treatment for the month. There's no guarantee that you'll get medication until the prescription is actually ordered.
Thanks for your reply and advice. It all sounds good for you so far. I can understand you might not be sleeping as well with problems with your daughter and school. My daughter had the same with my granddaughter and it was very stressful.
I hope your treatment continues to go well. I have
a friend that did Viekira Pak plus ribavarin last year and is now cured. She said that although she was too short of breath to exercise, she still went to work no problem and it was a doddle compared to the old interferon riba treatment.
She's right, compared to the interferon/riba, and also the old-style interferon (I was sleeping almost 12 hours a day and still working full time then), so far Vierkira Pak is mostly like a normal day. The shortness of breath will be from the ribaviron. Also, the other plus is treatment is only 3 months, which isn't really 3 months but 12 weeks, compared to either 6 months or a year on the old treatments.
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