Just to let everyone know if I haven't told you already
I begin my treatment on 22 January - Harvoni
Finished treatment 12 weeks later in April undetected on 12 week blood test
July 7 2016 Final virology test shows SVR...HCV undetected....this means I am cured.
I have had HCV since 1977 I am genotype 1b treatment naive
With Fibroscan 11.5 borderline cirrhosis compensated
I have hypothyroidism, lichen schlerosis and fatigue, bad indigestion(fatty food) , brain fog ... all linked to HCV
I will keep a post of how my treatment progresses during the 3 months... and would love it if anyone else being treated during this year let us know how their treatment is going and what their viral load and side effects are during and after?!
2016-The Year of the Cure!!!
As of July 7, 2016 after 12 weeks on Harvoni
I remain HCV free so I am CURED!!
All my LFT are in well within normal range
No yellow tinge no indigestion ...GONE!
Not one bout of fatigue, brain fog, ..energy levels are and remain high since week 2 of treatment..I am in the PINK....
CURED!
Liver scan and follow up in October to address the damage after the cure...I remain optimistic!
No drinking...
Written by
art4949
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Hi there, I am going to be treated this year with harvoni and ribavarin, probably about Easter time, when according to my liver nurse it is coming on general release. I have had HCV for 34 years, during which time I had ten years of severe ME. (they are linked.) For the last twelve years I have been fairly good, working part-time and doing a number of outdoor sports, but with the usual problems of dodgy digestion, lack of enduring stamina, brain fog, drug sensitivity, periods of very low energy and over reaction to common viruses.
I am dreading treatment because often I am intolerant of prescription meds and end up not taking them.
Somehow I got through a years interferon only treatment in the mid nineties, just before ribavarin came online . Apparently it was twice the dose of interferon that would be given for my body weight nowadays! But didn't work.
My recent fibroscan was 6.9, little or no fibrosis.
I will be following your treatment posts with a lot of interest. Good luck!
Beefeater like you, I have had HCV for many years - 42 - to be precise and, if you (like me) could tolerate Interferon in the mid nineties you can tolerate this! That is an order! I think the maximum dose is 3 X RIBA 2 times a day. Look at previous chats. I was given the maximum lol! There must have been a reason - I did not question it and only realised halfway through this treatment which incidently finished Tuesday evening. During a chat with m nurse she did mention that I could drop a tablet if I wanted, but I refused. She actually wrote in one of my letters to my GP - that I am very keen to continue! My results as of today is that the HCV is still undetected and I was told this after two weeks treatment!
I think everyone has different side effects and I do not want to mention mine on the website because I don't want to worry anyone who may get none or may get different. I got through so can you! and so can you Art 4949!
You are lucky your Fibroscan is 6.9 but is also why you have had to wait as you are not cirrhotic or borderline at 11.5.
Like you, I am sensitive to certain drugs and having lichen sclerosis (autoimmune) I think that is why they agreed with my refusing the ribavirin.
I have never been treated for my HCV until now..
I think age, viral load, other pre existing conditions and, of course, genotype all play a part in liver specialist fine tuning your treatment.
There is a load of info out there regarding the new treatments for HCV. We all want to get better, really appreciate all the hard work and effort the understaffed NHS do for us but it is up to us to be actively engaged in our own approach to our HCV and treatment..(.I just have to keep reminding myself that for last 38 years)..from making the lifestyle changes...like a healthy diet, abstaining from drinking any alcohol (tough one in our society), no taking drugs that are bad for the liver whether or not they are legal, and to remain physically active...when some days, all you want to do is sleep. Ha!
It seems to be very effective-my husband took it last year and is now clear of hepc- the only trouble is his liver is very damaged but not having the virus can help some repair.
I did a course of Harvoni plus Ribavirin in 2014, with zero detectable side-effecrs and early clearance. This despite then having decompensated cirrrhosis (now transplanted), and a totally different experience with Interferon and Ribavirin in the previous decade.
Good luck - you have a really good chance of lifelong SVR!
Thanks so much for that jimfearnley...glad to hear you cleared HCV especially as you had decompensated liver. Hopefully, your new liver has given you a better, healthier life now.
Thank you. My life has changed beyond measure. And, even with a dying liver, I am convinced I could detect the point at which the virus left my system entirely, even before this was confirmed by my next bloods results.
Glad to hear you are well Scottyboy. A little hot headed, if it was like me lol! I do not think my family would describe it like that! 21st is not long now! Xx
Thanks for your take on treatment art4949. Very helpful for me and has given me stuff to research and think about. I certainly am very lucky to have such a low fibroscan after all this time. The consultant who did it seemed pretty amazed at the time. I have led a pretty healthy life style but have to admit to having had the occasional drink, although very long periods teetotal. I guess a lot is down to luck.
Art4949they did not tell me my viral load before treatment and I did not think to ask, they used to tell me years ago. As you know I have finished treatment and my HCV after two weeks was undetectable but I have been told that I have to wait until my test on 6th April to ascertain that HCV has gone.
I had a lot of side effects and did not mention them because I did not want to frighten anyone but there was one which I still have and really worried me - I thought I had Parkinson's, so did my nurse.
I went to see my GP and he tested me and then told me that I do NOT have Parkinsons but I do have "Benign Essential Tremor."? Have not yet checked this as I have only just got home. This has only been since the treatment so I am hoping it will disappear. He did mention Beta Blockers but I said no.
I found out about another side effect of Harvoni that I read about on an American HCV forum website...it was high blood pressure...and this often happened to people who had low blood pressure normally.p when they started taking Harvoni. A few had such high blood pressure that their doctors had to put them on medication to reduce it...everyone still cleared their HCV and..their blood pressure went back down to their normal soon after treatment ended. So, that is good news.
When I asked my liver specialist nurse if they were going to monitor my BP..she genuinely did not know what I was talking about. I told her what I read on this US liver forum. She said this had not present with patients so far taking Harvoni in UK..and Gilead does not mention it as a potential side effect...but, unless you take your patient's BP how would know? In US the doctor always takes your BP as a matter of routine. I will just monitor my own using my husband's BP digital monitor...it is very accurate. Yes, I am neurotic. Ha!
I think these drugs may present side effects not picked up in the trials..look at Abbvie Viekra Pak..but they ar very rare and often disappear after treatment ends.
Thanks a lot for the info - it is a week since I have finished and I think? I am getting better daily.
Art, please listen to me, after two weeks of Harvoni/Ribavirin my blood pressure was - wait for it - 246 over 124. My nurse immediately called the doctor in and he prescribed me 5 mg Rampiril daily. This IS another side affect of Harvoni. How long does it take to take your blood pressure, honestly.
Art, if you can, buy yourself a blood pressure monitor from Boots, it is less than £50 - Boots own make.
Art I looked up Abbvie Viekra Pak and did not like what I read. Keep in touch and insist on your blood pressure monitoring OR they will have me to deal with. I mean it, I would tell them! XX
Great news Art..still not heard anything from my nurse despite the fact of cirrhosis constant nose bleeds because of low platelets and unable to sleep for the last 8mths..can't wait to start as I am really getting so tired of waiting now
I really am actually looking forward to putting an end to this 26yr nightmare once and for all..sick of people asking me if I'm OK and saying I look soo tired. .little do they know!
Anyway hope to join you on your journey with Harvoni soon Art..it looks like the end oh Hep C is coming for everyone. .shame it never came for some of us before the cirrhosis but hoping it will reverse in time!
Sorry, Ballie, I wrote another long winded reply to you on another post...I sure hope our liver begins to heal after the treatment...there s strong evidence that the liver does, indeed heal itself but I suspect a certain amount of fibrosis will always be present.
However, as long as the liver is otherwise healthy and not decompensated...I will be happy. Post treatment plan for me: . I will continue to be careful not to load my liver with toxic things such as foods high in sugar, high in fat (exceptions are holidays, maybe), any alcohol and drugs that are bad for liver. And keep appointments for follow up check ups. Also, get HAV and HBV vaccinations as I was never advised to before by my GP...otherwise, Pretty much what I have been doing already, (but with a spring my step, as I will be HCV free!!! )Probably what most of us try to do to keep,symptoms at bay with HCV now...
Hi scottyboy that spring in my step is coming back for me also for me also until this afternoon when someone REALLY upset me. They have since apologised but my body does not accept the apology but my brain does. I wish they would communicate!
So happy to hear that, I had alot of fluid around my ankles and legs and having the treatment seemed to clear up the last of it. Took 3 years mind you, but so worth it. Just grateful now. X/
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Harvoni-magic bulle
Three weeks after HCV treatment with sofusbivar and ribavirin still not feeling better
