Treatment offered for my HCV

I discussed with my liver specialist nurse, before she met with NHS team/specialists to decide the best drugs/treatment for me, why I felt Abbvie Viekira Pak, was not my first choice of treatment for my HCV based on medical reasons specific to me...This was after doing some research on the new drugs for HCV for my genotype 1b. I felt Harvoni was a better choice for me.

. The liver specialist had said they would be putting me on Abbvie drugs with Ribavirin...I wrote to my liver specialist nurse that Ribavirin was not necessary as I was borderline cirrhotic amongst three other medical reasons why it was risky ...so they decided to give me AbbVie but, without Ribavirin...as it is the NHS drug of choice for my genotype 1b not Harvoni.

I appealed again to my liver specialist nurse why I felt Harvoni was a better choice of drug for me ...my liver specialist nurse got back to me and told me, after further consideration, the NHS have decided to treat me with Harvoni, (no Ribavirin)! Hooray, best Christmas present ever...my liver specialist nurse has been so supportive and understands how important it is to me to get this right so I stick with the treatment and clear this virus. I start treatment in January..will get dates on 5 January at pre- treatment consultation. Happy Christmas everyone!

32 Replies

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  • Art4949 I am so delighted with your news five minutes ago. Previously, the other day, when I read what you wrote about Abbvie Vieira Pak I also did my homework and was going to copy and paste what I read but then thought I was not strong enough to do it!

    Just to say 5th January 2016 means something to me also - the last day of my Harvoni and Ribavirin treatment!

    Art4949 I am so proud of you that you insisted on Harvoni! Definitely your best Christmas present ever!

    Happy Christmas and a healthy 2016! XX

  • Hooray! Good luck...thanks for your support!

  • How is your treatment going, Tatjana? I imagine you are so pleased to be finished...hope your viral load is nil and stays that way.

    I am beginning my treatment on Harvoni only (refused Ribavirin because of lichen schlerosis ) on 22 January. I hope the side effects won't be too bad.

    Hope you had a fun Christmas and wish you a HCV free 2016, xx

    I will do regular posts during my treatment.

  • Thanks art4949. I understand why you are not on Ribavirin. Does that mean you are on 24 weeks Harvoni? I want you to promise me that if you have doubts about any side effects you will contact me and we can swap notes (maybe privately) because I need to make sure that you stay on the treatment. Mine finished yesterday. Life has not been exactly easy over Christmas and New Year! Saw my nurse today. She has been amazing.

    Had blood tests done also. Will not know for certain if HCV has gone for good until 6th April. XX

  • 12 weeks...I think it is because I have genotype 1b

    Did you have many side effects? Tiredness seems to be the greatest...are you feeling better now? The ribavirin from what I gave heard from others really knocks you sideways...glad you made it through holidays...hard to enjoy when so tired.

    I will keep you posted on this site when I start and let you know if any side effects..I will not give up once I start treatment, for sure!

    When you find out for certain in April, I will have completed my treatment later on that same month.

    Let me know if you cleared the virus...good luck! X

  • Art from what I can deduce everyone has different side effects. I am glad that you too are like Magnus Magneson?? Who always said 'once I have started I will finish.' He was of course referring to sentences. Remember 'You will not give in

    HCV will not win.'

    One bit of advice - buy a tablet container from Boots with days of week. It makes life so much easier if you are taking more than 1 tablet.

    Good luck for 22nd January and contact me if you have doubts about side effects.

    I saw a different number Art on another website, is that you? XX

  • Great news Art as Harvoni is what you shoud have been offered. .no need to worry they say Harvoni does cure in 12wks for most people without Ribba so good news. ..we can compare notes if I get mine offered soon as I'm down for Harvoni next year. .hoping it will be soon as I'm getting so exhausted all the time..but so exited to see the end of all this madness that takes over your body and mind!

  • I hope you get offered treatment soon, too.

    This long waiting without any idea when one's treatment begins must end. It certainly is not in the patients best interests or good health.

    I think the NHS should develop a better framework for treating its HCV patient...it should be positive informing each patient when their treatment is likely to begin and what treatments are available on NHS for their genotype according to NICE final guidance.

    All this waiting, anticipating without knowing when we will be treated is enough to exhaust you in itself...also, it diminishes ones feeling of self worth...as little value or regard is placed on the patient, their life or health as they wait indefinitely.

    . More consideration should be made, especially by drug companies, of the effects high costing of drugs, which have life saving value impose on society. In turn, the decisions forced to be made by healthcare workers affecting even denying the very cure for the patient the drugs were designed for in the first place. This present day scenario allows profit to guide, even deny patient care. So, in the future, it seems fewer people will be able to access the care or cure they need for their disease because of high costs to healthcare systems.

    I have always felt that I am not my disease...but all this waiting has made me obsessive about making sure I get my treatment and focusing down on my HCV to the exclusion of many other things in my life...a life on hold. No more! Thank goodness..

    Sorry to rant...

  • I begin my treatment on January 22. The Harvoni will be delivered to my home. I go to for blood tests to look at viral load and usual LFT and thyroid TSH, T3-4 on start day and final check up...just have an ultra scan to do beforehand. I refused the ribavirin because of my lichen sclerosis

    Do you have a start date yet, Ballie? Let me know. I will do a regular post on here during my treatment.

    Hope your holidays were enjoyable ...lets hope we all end 2016 HCV free!

    And I can stop napping mid day because I always get tired so easily with this HCV. I wonder if some of our other symptoms will go?

    The hospital pharmacy research team asked me to take part in a research project?..not sure..it is a follow up monitoring of my health post HCV for 4 years. Non invasive...other than blood test and monitoring my medical records, with my permission. Let me know if they asked you?

  • Yes Art I was asked about 2yrs ago to take extra bloods..not post treatment. .hope all goes well..I'm still waiting. .nose bleeds nearly every day now

    Also I take thyroxine to as my thyroid got destroyed on the Interferon a few yrs back.

    Anyway good luck Art I hope all goes well and hope you get good news after your 12wks Xx

  • It's worrying that they suggested alternatives before they agreed your idea was better. If you hadn't done your research you'd probably have done a different course of treatment.

    Good Luck!

  • Thanks for that...!

  • Your post has helped me so much.

    Through a series of events I have a specialist appt tomorrow... Hopefully talking Tx options. I am treatment experienced pegylated interferon & ribavirin, genotype 3a, NAFLD, T2D, and wanted to die on the Ribavirin in 2012.

    I have many questions tomorrow about my options..

    My last fibro scan was 16.6kpa but clear USS, & CT. I believe I am also borderline cirrohtic. Bloods have recently started climbing, but overall symptom free, bar some fatigue that is just how normal feels.

    Not sure what to expect, my daughter is coming with me. I'm a little anxious.

    Thank you for your post.

    Why do they treat with Ribavirin with Harvoni? Is it only for treatment naive patients?

    Thanks

    Stephanie

  • You can refuse the ribavirin if you have any pre existing conditions like lichen sclerosis ...or if you feel it would make it too difficult for you to complete treatment cause of side effects. It doesn't improve the cure rate for my genotype enough to make it a choice in my opinion. It is always tough to know how each of us will respond.

    But having a blood transfusion during treatment due to the side effects of Ribavin would scare me as I contracted my HCV through an infected blood transfusion. Trust is a big issue here for me. What new blood borne disease might be in that blood Pak hooked up to me. If my treatment fails it will be more likely that I have an existing drug resistant genetic make up, not because I didn't take ribavirin.

    They identified some if these genetic markers in HCV patients who did not clear virus during new treatments, but the NHS cannot afford and does not yet have the facility for this type of testing. It is such a small number of patients who have these variant genes, it's not worth it? Sorry, I've gone off subject.

    I think genotype and whether or not your liver is cirrhotic also determines the use of ribavirin.

    Happy New Year!!!

  • They don't always give Ribba with Harvoni as new studies have shown it's effective without Ribba..I think costing plays a big part.

    I will only be offered Harvoni and i failed interferon and Ribba a few yrs back after 48wks of treatment. ..although I have genotype 4 and cirrhosis I was told you only get 12wks of Harvoni!

  • im geno 3a on harvoni for 7 weeks with riba most people on here are on it with riba as it gives a better sucess rate not treatment naive nobody wants riba just u only get it for 12 weeks ricky

  • Why did you only get 7wks Ricky. .just curious as I thought you would be offered a longer course of both since you have genotype 3 ???

  • I think he has completed 7 weeks of a 12 week course.. I could be wrong.

  • sorry im on my 7th week of 12 lol

  • Ricky as you know I am nearly at the end of my Harvoni/Ribavirin treatment. I have forced myself to continue with both to the end and I feel like that now but I will NOT give in, HCV will NOT win. I have waited 42 years for this! As I said above, I am so proud of Art49 insisting on Harvoni.

    I am lying in bed typing this because I never slept last night but as somebody? On TV always said "I started so I will finish".but he referred to end of sentences.

    As I am on both H and R I read what is said about not needing R but take no notice. I took it before with Interferon and survived! Just survived lol!

  • Good luck Ricky

  • I just don't know,all these regimes are pretty much the same I think,the riba is just chucked in as overkill/insurance I suspect.... Clinical trials have shown(several)-that riba makes neglible difference,so I reckon its just a 'chuck it into the mix-hey ho,let's go'kind of trial, and to be honest,I'm finding it a bit of a futhermucker right now...;-)

  • just a quick did u clear the hep and did u carry on with the riba all the best ricky

  • Hey Ricky,I'm coming to an end of my harvoni/riba treatment in about 2 weeks now,I'm tired ,can't sleep at all,look and feel like a ghost.1st month-easy peasy,2nd month-a challenge,3d month-ive had enough now and want to finish!Lack of sleep brings a lot of the symptoms that maybe people misinterpret as 'side effects'.I.E. Irritability/feeling cold/snappiness etc.The insomnia and the hallucinations whilst in light sleep have been difficult for me.Good luck.Andrew.

  • thank you im on my 10th week driving me a bit nuts some thing different every day along with the usual what do u mean by not side affects thanks ricky by the way are u clear??

  • Umm,I don't know if I'm clear,the policy here is not to say anything until you've completed your course,soI don't know.As to side effects,I've been an insomniac for many years-hep c symptom?But now it's incredibly magnified on this regime.I thought long and hard about binning the riba before I started the harvoni regime and just pretending to take it,but it struck me to do as I'm told-for once.....By nature,I'm rebellious,cynical and horribly stubborn,my consultant made it plain he regarded me as 'difficult' for turning down the old treatment.In some ways,I feel ambivalent as to whether my viral load is clear at the end,after 30 odd years of this disease-the damage is done and its probably just a delaying device-at best.So I'm not dancing on ice right now Frankly.Take care,Andrew.

  • and you take care

  • You are absolutely right...I refused ribavirin...I start on Harvoni on 22 January.

    Back from my holidays...looking forward to a HCV free 2016!

    How are you doing?

  • Hey Art,it's all good,I'm more than chuffed to hear your 'hitting the road' at last,about time too!I'm confused about the riba component frankly-I just don't know......My take on it was this-if I don't take it and I don't clear the virus,therefore,the failure is mine for ignoring clinical advice,and I would have to be blamed for not following the recommended advice,and also I felt I would be open to being accused of not doing 100% of everything I could do to kill the virus,and I would not welcome a failed attempt and feeling to myself-why oh why ,didnt you do EVERYTHING to kill this futhermucker you nob!Best to you,random thoughts from a slightly crazed,sleep deprived ,on the edge,Welsh paranoic.I Was afraid riba might make me unpleasant,even violent to my lovely,long-suffering partner-sadly,I observed her sharpening a hatchet in my shed last night,I fear it could be a long weekend,or even a short one-gulp!!Take care and good luck We I trust,are the lucky ones......

  • The advantages of taking ribavirin for me were outweighed by the negative, possible side effects due to my personal health issues. Also, The evidence of taking Ribavirin with Harvoni does not increase the cure rate for HCV for genotype 1b significantly to risk blood transfusions where. I might be exposed to new health threats as well as the other side effects in relationship to my health issues.

    As I am treatment naive, low viral load, with compensated borderline cirrhosis, 11.5 Fibroscan I felt for me Harvoni has shown a very high cure rate on its own. But if you can tolerate ribavirin, then I can understand taking it to make absolutely certain you have done everything to clear HCV...

    I hope you have survived the weekend! Ha! Yes, we are lucky to even be offered this treatment..hooray!

  • I was treated and cured from the virus 4 years ago. Infernon and ribaviron geno3. Before discovering I had this condition my health was fine. It has destroyed my life, I now have cryoglobunemia and extreme fatigue along with a total inability to concentrate I can,t even read a newspaper.

    I was not given the option of a liver biopsy and the possibilitiy of watching and waiting.

    a friend of mine who almost certainly contracted hep around the same time as me was tested positive Around a year ago, he gave up drinking, changed his diet and has no health problems. He goes for a check up every 6 months and I suspect will not have treatment unless things change. We are both 64.

    I am angry that I was not told that the drugs can lead to further serious health problems. If I could turn the clock back I would NOT take those drugs and be a Guinea pig for the. Medical establishment.

    My life is shattered I will never work again, I was a builder and I was working right up until I started treatment now? I am stuck at home, skint and angry

  • Sorry to hear the treatment didn't go well for you. It was never a walk in the park. For some it's now moved on to different medications without the nasty side effects of interferon and Ribavirin. A few of the genotypes can now treat without interferon, using protease inhibitors or polymerase inhibitors. Still not easy I admit, but we must keep treating and curing Hep C. Did you ask about Rituximab as suggested elsewhere?

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