Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: 1bit on May 22, 2016, 08:52:58 am
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Hi
I am a Genotype 1a who's a responder relapser from 48 weeks of INF+RIB (took 16 weeks to get neg result but GP wouldn't extend my Tx because at week 12 I was <15) - this was in 2008/9
I was put forward for Harvoni in their MDT discussion and received a letter saying I was allowed it and when i went in to see the GP his nurse said "yes he's on my list for letter to be sent out in march"...when nothing happened in March I made an appointment and he said NHS England had changed the guidelines and that he didnt know WHEN i would be treated with Harvoni as those with a higher fibroscan score get Tx first... I told him I was under the impression that this was always the case regardless of what drugs were being given?
He then started to say he might be able to get me on this Abbvie 3D drugs with Ribavirin - he said it has the same efficiency but is cheaper, when ive checked its only a small amount cheaper...less than 1%..??? ive read Harvoni is $85,000 but 3D is $84,500 (something like that)
Then I read that the FDA has forced the company to put a warning on the box saying it can actually harm your liver??
anyway I start in 11 days for A3D and wondered if any forum members could tell me what to expect with regard to side effects and what is the best habits to get into while on treatment, i.e. are there supplements that can help the efficiency of the drugs?
any information would be greatly appreciated
thanks
P.S. just out of interest I had a Biopsy 10 years ago after 7 years infection and I scored 2/6 on the ISHAK scale, they call it Grade 7 / Stage 2 on my letters, then 4 years later in 2010 (1 year after my failed Tx I got 8.9 on the Fibroscan....fast forward another 6 years and I now get 7.9...something I find hard to believe..but never mind - my ALT was 50 but my Viral Load is 10 million and that's the highest its ever been, usually 2-3 million)
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I've done that treatment. The warning is for people who have a fair degree of liver damage - basically your Child-Pugh Bs and Cs. With those fibroscan numbers my non-medical opinion is that you are not in that category.
RIBA can be tricky for some so watch your haemoglobin carefully.
I did 24 weeks of it as I have cirrhosis. It cured my HCV and for that I will be forever grateful.
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Hi 1bit,
Welcome!
That is the treatment i took. I was also genotype 1A and took Veikira Pak by Abbvie with ribaviron for 12 weeks. I did suffer a bit from the ribaviron - I became anaemic and felt weak and out of breath. But, I worked three days a week at a difficult job, and travelled 90 minutes on each of those days and no-one at my workplace noticed that I was feeling unwell. And it was nothing like interferon. I had to take time off my other job though, right through the middle of the treatment.
But, on the plus side there is research that shows that those who experience anaemia have better outcomes; the whole treatment flew by, and my tests so far have shown that I have completely cleared the virus.
I finished treatment two months ago now. And I'm feeling pretty good and I am very very happy to have had that opportunity to change my life around.
Drink lots of water, talk to people - or at least someone - about what you're doing, find a good regular and available doctor, walk, don't drink grapefruit juice, rest when you need to.
Good luck to you,
Hazel
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thanks for your replies
I was hit very hard with Ribavirin last time, my Hg went down to 9.1 and instead of giving me a blood transfusion they just told me to lay back on the RIB to which I spent 90% of the 48 weeks on 4 of the 5 tablets, it took months just to get my hG back above 10. yes i felt out of breath, we lived up 2 stories and i had to take it step by step, one night i had to ask my uncle to leave after carrying his computer LCD monitor up the stairs and as soon as he left i phone n ambulance as I felt like I was going to die...they just stuck me in a room and kept feeding me water until i felt better.
Now Iam on my own in a shared house and Iam very concerned about being on my own, I asked my uncle if I could stay the first week of Tx as I had a bad experience last time and he didn't reply, so I said well just a few days if that's too long and he said OK but he will be doing this n that n going away for the weekend, so it makes me feel like he doesn't want me there so don't think I will bother, I have no other family I can rely on....I find this strange as he's always asking if I fancy coming over to stay.
Im tempted just to take 3 RIB this time because it hit me harder than the Interferon Alpha 2a did (apart from the 1st injection)
thanks
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My specialist reduced my riba dosage from 5 tabs to 2 very early on (3 weeks in) as my bilirubin shot up and my hb dropped as well. I did 24 weeks and cleared. Once my hb was reduced I was fine and managed to work, be busy and get on with life.
I found in the first month or two, my hb #s would drop, I'd be affected by it, then I'd stabilise on that level. Then the level might drop a bit (say from 110g/L to 110g/L) and I'd be hit by it, then I'd stabilise. My level sat around 100g/L-110g/L and I was fine with that. It's taken a while to pick up again - it was around 119g/L 3 months ago, and average range for my lab is 115/150g/L.
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thanks for your reply Philadelphia :)
Strange figures those...I just know what they tell me in UK and normal Hg rate is 15-17 (mine was 14.2) and within the second month sorry it was down to 9.7 and i spent nearly all my 48 weeks on 4 riba... im gunna ask if I can just take 3, I mean if these new drugs are that good then it shouldn't have that much of an impact
heres a screenshot of my results that I kept phoning the week after taking my bloods and kept a chart
http://i.imgur.com/wSwyK1E.png <- so you can see the whole thing
(http://i.imgur.com/wSwyK1E.png)
see how it hovered around 9-10 during the Tx...and i was getting out of breath easy, the injections was bad at first but after 2nd one it was nothing, it was the Riba that hit me hard, i got loads of rashes and scratched them into scars..luckily theyre gone on my arms but not on my legs
if your wondering why its got 150mcg for INF on Wk4 was because I was scared after vomiting and shivering from my first one so i squirted a small amount into the sink
what sort of side effects should i expect from A3D?
Many Thanks :)
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Hi 1bit. I sent you a private message about your Riba question.
Good luck!
kim
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just want to say thank you for a very warm welcome to the forum (I wont mention any names but I've had a terrible time on one forum) - so thanks for that :)
so it sounds like the A3D is ok regarding side effects and its just the Riba that affects you the most, well it did with me and I know what to expect, i did climbatize to it, but had to be careful what i was doing.
me before INF+RIBA
[photo removed by admin]
me during INF+RIBA
(http://i.imgur.com/qAU4sSs.png)
(http://i.imgur.com/m1Fp5qw.png)
(http://i.imgur.com/cfFYuB8.jpg)
Im pretty certain that was the Riba that caused that too, my legs are scarred still to this day as they don't see much sun but my arms and chest is fine - 8 years ago that
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Hi 1bit,
I am sorry about your situation and it is too bad your Uncle won't help you out. I am glad you are here though as these people are kind and knowledgeable. The pics really prove what poison riba and interferon were. I was lucky to stay at f1 for many years and just finished 8 weeks of Harvoni. I don't think I could have survived the what you and so many others have gone through. So hang in there and hopefully this time around will be much easier for you. Brie
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Hi 1bit,
I am sorry about your situation and it is too bad your Uncle won't help you out. I am glad you are here though as these people are kind and knowledgeable. The pics really prove what poison riba and interferon were. I was lucky to stay at f1 for many years and just finished 8 weeks of Harvoni. I don't think I could have survived the what you and so many others have gone through. So hang in there and hopefully this time around will be much easier for you. Brie
thanks, i think I'm going to need support, my uncle says i can stay a few days but will be away most of the time - but at least i will feel safe there, i live in a shared house and they aren't the best of people I live amongst and none of them know I have Hep-C and about to start treatment, it a very rough neighbourhood in Gateshead with fighting and druggies all over, I cant get a decent nights sleep - on my last Tx I had my Girlfriend who knew everything and looked after me (whom we split up 1 year ago after 14 years cos she wanted to start a family and I wasn't ready with my Hep-C and mental health issues)
When I think back I think the INF just made me feel depressed at times, but the Riba us really nasty and am sure was the cause of all my rashes and thus scars, I will have to try not to itch and use plenty of oil/cream
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Our numbers are probably calculated differently in Australia- I think the equivalent would be that I sat around 10.
Get straight back to your dr If you see any ribavirin issues, as I'm sure you will. As I said, I reduced the dose early under Drs directions and I acknowledge that's not ideal but I still cleared.
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picked up my drugs today...start on Thursday...not looking forward to it, they wanted me to take SIX riba this time and my Hg is just 11.2 at the moment aswell and im 30% lighter than I was... so she said take 4 for now
and its just for 12 weeks...would of thought it would be 24 for a responder/relapser?
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You have been through hell and given up a lot, but I do hope this time around goes much better for you! I would think you have to treat longer too, make some noise. We have to be our own best advocates! Take it one day at a time! Brie
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started last night and only had a bad head and nausea this morning which went away after taking paracetamol and breakfast....fingers crossed
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May you have smooth sailing on your treatment journey, 1bit. :)
kim
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6 days in and only side effects is irritable skin and i have a serious dry nose problem which I had pre-tx and its worsened, feels like its really irritated and burning inside, i just try to keep it wet as this suppresses it - Ribavirin...evil stuff... i think if i didnt take that i would have no sides at all now, the original nausea and bad head was due to lack of sleep... early days yet :)
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well i awoke at 3am with heart palpitations about 180 pounding and have slowed a little by 11:30am, im worried sick, i also feel dehydrated (dry mouth) no matter how much I drink and feel weak... i phoned the hospital but had to leave a message to call back
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I had the same issue while on treatment - I went to a cardiologist who ran tests and couldn't pinpoint a reason. Fortunately it subsided and didn't interfere with treatment.
Drink plenty of water and stay hydrated and please keep us posted.
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I had the same issue while on treatment - I went to a cardiologist who ran tests and couldn't pinpoint a reason. Fortunately it subsided and didn't interfere with treatment.
Drink plenty of water and stay hydrated and please keep us posted.
how many times did it happen to you>?
i suffer with anxiety so it worsens it, i was close to calling 999
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It happened to me for about 5 days straight- I think anxiety is one of the side effects of Hep C - used to happen to me for a day or two if I drank too much alcohol (stopped that since my diagnosis) but I have a family history of a-fib too.
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It happened to me for about 5 days straight- I think anxiety is one of the side effects of Hep C - used to happen to me for a day or two if I drank too much alcohol (stopped that since my diagnosis) but I have a family history of a-fib too.
when did it start for you?
Nurse says no-one has ever reported this side effect and told me to take this evenings dose now as i didnt take this mornings, I dont think i can go through that..not with anxiety too
what is a-fib..?
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It started about 3 weeks into treatment - might have been allergy related too - was outside and my allergies flared up worse then ever.
Afib is short for atrial fibrillation - a quivering or irregular heartbeat.
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just to let you all know
i had 6 days of Tx and stopped due to rapid heart beat at 160-180 bpm for 7 hours before it declined at 3.30am "suddenly" on 7.7.16 - its been 8 days since i stopped Tx altogether and while i dont feel sick anymore i still feel like i have issues with my heart (skipping a beat)...when it originally happened (180bpm) the nurse said go to A&E for an ECG if it does it again - i was wondering why they gave me one to start with??? didnt on INF+RIB???
im just going to live with this disease as this/these drug(s) seem dangerous and I dont think they tell you the possibilities of what could happen (as not to scare you off just because for most its ok)
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I am sorry to hear this news - but just think that there are so many new drugs coming out - so you will beat this thing.....
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1bit, I am so sorry to hear of these complications. But!! New drugs are literally on the horizon, a new one from Gilead is due for a FDA decision in 2 weeks that will be for all genotypes, so hang in there and there is hope for better options soon. Now that you've tried the Riba and had this reaction, you now have evidence that treatment with this drug isn't a good match for you.
I see you have 1a, so there may even be other drugs on the market for you now, like Daklinza and Zepatier. Talk to your doctor about these other possibilities. FT
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1bit, I am so sorry to hear of these complications. But!! New drugs are literally on the horizon, a new one from Gilead is due for a FDA decision in 2 weeks that will be for all genotypes, so hang in there and there is hope for better options soon. Now that you've tried the Riba and had this reaction, you now have evidence that treatment with this drug isn't a good match for you.
I see you have 1a, so there may even be other drugs on the market for you now, like Daklinza and Zepatier. Talk to your doctor about these other possibilities. FT
hi thanks
ive had Riba before and never got the rapid heart beat...so i dont believe that was the cause... either way your right i wont ever take riba again, i was hesitant too start with...but im sure the other drugs had something to do with my heartbeat and i know a couple of people who've suffered with it on A3D and Harvoni
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Sorry to hear of this complication for you. Hope things return to normal soon.
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1Bit,
Sorry to hear of your difficulties. Really sorry you had to quit. I hope you coordinated with your doctor to be sure you're using all your resources. I have had a hard time with Riba, though nothing like yours. It trashed my mood big time, and still does, but less so. Still, to call it evil would be to reject the blessing that it also works for so many. Keep going 1Bit. There are tons of people getting cured one way or another. Best wishes on beating this once and for all.
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as ive said ive has rib before and it certainly didnt give me these symptoms, ive been told that Rib + the new drugs makes rib even worse than it was with INF...could be the case cos I certainly didnt get palpitations of 180 BPM for 7 hours in the middle of the night when I had RIB + INF and i completed that Tx...!!