HepC Chat
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Starting treatment for gen type 1a in new year, anyone has any experience

Hi all. I have had hep c for twenty years and was told at my last appointment that I was now approved for treatment with viekirax ribavirin and the other tablet (dacta something) sorry I keep forgetting the name! Did anyone else have this treatment and how bad is it with the side effects? I'm worried as I do a very physical job and my iron levels are low anyway, also I'm sort of in Menopause also, so I'm shit tired most of the time anyway. The nurses keep saying most people are fine and it's not hard to stick out the twelve weeks, but it all sounds a little too easy, and I'm not sure if it really is. I was never approved for treatment before so this I my fist attempt. Also does anyone know, when you go to the clinic and they give you a prescription for the tablets, will you need to take that to a pharmacy and pay the prescription charges? Or do they give you the actual tablets at the two weekly appointments? Can't get hold of my nurse at the moment, so if anyone knows it would be very appreciated.

Thanks in advance to anyone that can answer :)

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Oh sorry, I got the name of the tablets wrong! So the treatment is viekirax + exviera with ribavirin, as they say I won't be able to do it without the ribavirin due to having Geno type 1 a :( thanks again!

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I am on same regime and now on week 10 only 2 wks to go ! So far its not being as bad as I expected. Worst thing is energy levels are low , feeling breathless , and heamoglobin levels have dropped hence low energy. I think it affects your immune system , bug I eat a healthy diet lots of greens , fruit ,ect.

Best of luck !

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Best of luck to you! I'm still worried how it will affect my work, I can barely manage as it is, it's very physical.I am just trying to be positive and hope for the best! Ibwas offered to take part in a trial, but that's still 6 tablets a day and also has only been used on genotype 3 so far. Whilst I appreciate that this would help research, I just don't think I can go through that, so will probably just stick with the original plan of treatment. Have a good Christmas!! :)

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And to be honest the only tablets I'm worried to take are the ribavirin because I have really low red blood cell count anyway :/

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It is definatly worth sticking it out for 12 weeks . I also have a physical job and exercised regularly at the gym .I dont really have the stamina now, but I know it will come back. My viral load has come down considerably . Eat healthy,go walking outdoors ,and above all think positivley.

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Hi thanks for your reply :) so you worked just fine through treatment? Or were you too I'll to work, some people seem to have had a rough time. But I'm trying not to be too scared, as I have to do this come what may :)

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ill not I'll of course ;)

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I was in this now finished I was told I had to go hospital week 2 went very yellow that only lasted a week or two but had bloods done week 2 was told hcv was not detected all blood test since some back clear I found after treatment I feel terrible cry all the time like the life as been drained out of me but people are different so I hope you don’t feel like this wish ya best of luck

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The ribavirin made me go proper yellow they had to reduce my dose no one knew I was hep c positive so had a lot of explaining to do when I went yellow 🙈

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Hi I am on these the first week was grate week two I went very yellow was not a worrie As was told that the tablets attacking the virus tho it looks horrible I drank plenty of water and after about 5/6 days I was back to my normal colour then all the time up to week 7 I was total nackard could not keep my eyes open just so exhausted but now week 8 I feel like my self and not tiered no more these meds nicked the he’ll out of me to the point I was thinking of stopping treatment I got my bloods done on week two went for results at week 4 hep c was not detected every one is different tho also from week 2 to week 7 felt constantly sick suck a horrible feeling but on other hand I no someone who taking same meds and they did not go yellow I for 1 could not of kept a job down I could barely get Kids to school on a morning at first then had to arrange for school to pick my kids up I wish you all the look and if you do go yellow drink plenty of water wish you the very best if luck this treatment is very affective so keep at it and remember no matter how you feel it’s not for ever xx

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Hi I had a ribavirin combination treatment last winter. I have to be honest and say that it had a range of side effects. From jitteriness to tierdness. The think I found hardest was that my brain went - I am a writer and lecturer and this was a disaster!! ironically my physical levels were not too bad during the day - but I needed to sleep a long time at nights. I too had low iron and was given folic acid beforehand to build it up in advance. The 12 weeks passed relatively quickly BUT as I am very sensitive to drugs at all it also resulted in low immunity and I ended up with pelvic disease flaring up (never had it before but may have had it lyng low) and then abx for that gave me thrush as well as a whole range of other nasty side effects and I needed 6 months treatment to try and get that out of my system as it had invaded my whole body . . . However the good news is - a year to the day after starting the Hep C treatment I feel great, hep C free, my brain is back, my physical condition is pretty good, and I have good iron levels, and all ther side effects gone . . . I really would invest in an NHS prescription pre-payment thing though as although (in UK) the treatments are all free the meds you may need for side effects or to cure the side effectst etc etc are not - and it would have cost me a fortune if someone had not told me to do this. PS I am 60 now so was a few years just past menopause when I started treatment. I think the hormones were affected by the treatment as well - but please DO NOT LEAVE TREATMENT any longer - you need to do this!!!

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I was treated with dacltisvar sophosivar and rivibirin sorry about my spellings. I was as sweet as a nut on them and cleared the hepc lovley. Ribivirin was almost like taking a sleeping pill if its the one you take twice a day, very relaxing. I have my last appointment at kings in December. I have hardly had any alcohol in the past year waiting for this appointment and I still feel good. I'm 64 years old. Good luck with your treatment, the 12 weeks soon go by,

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Wow that's grait so glad to here your ok.

Do you have any cerroses or fatty liver befor taking the treatment?.

Just wondering becouse I do and this treatment for me is like rat poisen iv never been so I'll even befor the meds I was ok had some symptoms of hep c bit of pain in my liver area but nothing like what I'm experiencing.

How long have you left on the meds ?.

Thank you x

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I was given the tablets at my appointment

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Thank you all so much for your answers! I'm glad I asked so I know what could possibly happen. The fuzzy brain I have anyway from hormones and luckily my job is more physical, so I might get away with that lol. Yes the ribavirin is the one I have to take twice a day and my nurse said although they give it according to body weight mine might be lowered a bit due to my iron levels never going any higher than around 13! Has been this way all my life though. Yes I'm determined to start this treatment, I really have to. I got away with a low viral load and really good blood tests for a good twenty years but it's now tripled in the last six months. So fingers crossed I can start as planned in the new year :) and nothing changes again at the hospitals end. phil_7 I'm glad to hear you got through it all so well and good luck for your December appointment! Although you are on a different drug regimen, I hope that the one I have to go on, is manageable too. My nurse said some people don't have too many problems and that she knows of only one that needed a sick note. I wish you all the luck for when you are finally done and free of this crappy disease! Shellwalsh83 good luck to you also, not long now for you :D. And parsnipbun thanks for advising me on the prepay certificate, wouldn't have thought of that by myself :)

Good luck to you all and thanks for your answers!!

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Oh and I'm so happy parsnipbun that you are free and healthy again!! Sounds like it was definitely worth it :) I'm so grateful that you all took the time to reply, I'm feeling so much more confident now that I can go through with it! x

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Hi There! Could you let me know how you are getting on with your treatment. I have had this for 18 years and am starting treatment in next few weeks.

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Hi, I haven't started yet, I have my appointment on the 9/1 so don't know how it will go yet. I wish you all the luck, I have been told it's apparently doable and hopefully we will get through it just fine.

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Thank you for your reply😊New Year new us😉it will be good having the energy again.

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I had these treatment and not gunna lie I felt terrible after week 2 even thought about stopping treatment I never felt so low and nackard in my whole life I went very yellow at week 2 looked like I just been dug up 🙈 that did not last long tho and was told it’s the tabletsdoing whot they are ment to I felt dick day / night then come week 10 it’s just stopped I am now ok was told I hep c clear at week 4 not only 1 more week and I’m

Finished thank god

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Hi I just finished this treatment I found this horrible to the point I thought about stopping I went yellow week 2 looked terrible that only lasted about a week then the sickness kicked in had that right up to week 7 then it just went and I felt find since I finished treatment I feel terrible just sit and cry all the time for no reason but on a good note my week 2 blood results cane back hep c not detected so it’s very good keep at it and good luck x

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Thanks, good to hear you have finally finished!! :D I have an appointment tomorrow, I suppose to discuss starting date. Little scared to be honest. I don't have too much liver damage yet, so hoping the meds won't hit me as hard as you and I don't turn yellow! All the best to you, I hope you have beaten this!!

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Thank you and wish you the best of luck with treatment and recovery

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Your first appointment they give you big bag of tablet then other times they give you a slip to take to the hospital chemist to collect your tablets you don’t pay

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New on here by 2wks but just seen your post. You've no doubt got your answers now but just wanted tovsay i started treatment on about 4th Jan, '18. I've Hep C, genotype 1a with cirrhosis, starting Viral Load 2,600,000. Am on 24 weeks of Viekirax, Exviera (Dasabuvir) and Ribavirin. 2 weeks in, though complicated by 'flu, I've felt very sick, deathly tired and exhausted, all tastes in food and drink completely reversed(ie only drank water before - now it makes me gag; barely ever ate meat - now I very strongly crave it!), to name a few symptoms. No trouble sleeping unless I've felt sick. Unsure how much is due to the flu so feel i cannot comment accurately at the present time. If i could shift this disgusting green gunk from my poor airways, I feel i could think right again and wouldn't be dizzy and 'vacant' - which is how i am now. Can't cough it, steam it or anyhow else it out of me yet. When i have, i think I'll have a clearer idea of how I'm really doing... You and i must be running neck and neck. How is it for you? What, if any, S E's have you had? All my very best to you, Good 🍀 Luck with it all, and take care 😊🙏😊

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Oh you poor thing, sorry you are feeling this poorly with the flu as well! Well I still haven't started yet, they asked me to come in on the 6.2 to collect meds, but I might start on that following weekend as shit scared if I get unwell at work. I only have to do 12 weeks and I don't have cirrhosis, but I do have the same genotype as you. So yes we will be running kinda head to head. Would love to hear how you get on, I hope you will feel much better once you have cleared your cold. Are you sure you don't have a chest infection though, if it comes up all green? You might want to see your doctor, especially now you are on this treatment. Reversed cravings could only do me good, I have way too much of a sweet tooth, maybe I will crave veggies and fruit instead! Lol ;). All the best to you, I hope you will feel better soon, and that it generally gets easier. I have no clue what to expect for myself, as my nurse doesn't seem to think it's too bad, which makes me a little suspicious as if they just don't want me to know how bad it can be. She said to me that she had people say they were very scared and now they have finished treatment they say they don't understand what they were so scared about? Not sure what to make of that, but only way to find out is to try it I suppose. I'm pretty sure your flu isn't helping you in feeling ok, so fingers crossed that it goes away real quick. I will update once I started. All the best to you, it will all be worth it in the end ☺️🌧️🌦️🌥️☀️🌞🍀 and good luck to you too!!x

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Oh and I will have to be on 6! Ribavirin a day plus the other four so ten tablets a day, are you on that many ribavirin? It's my fault as I got fatter over Christmas and since they go by weight they now go by my Xmas weight! Lol. Although I'm always borderline anaemic, nurse thinks she might give me 'only' five, but that's not confirmed yet. Desperately trying to stay positive, but I haven't heard anyone feeling half decent on this treatment, only on the others, so if I'm honest I'm shit scared I won't be able to hold my job down 😧

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Hello Lucien777, thankyou for your kind wishes, means a lot. Don't be too worried about work. I feel that, had i not picked up this flu, i could cope.......probably! You see, i was exposed from Day 2 of treatment so I'm unsure which symptoms are down to this - and which to meds. Yes i take 10 per day, and a new one since yesterday: Amoxicillin! Saw blood in sputum so thought enough is enough. Felt crap yesterday so just discussed symptoms with GP and she prescribed on basis of that. Yesterday my ears hurt deep inside, ditto eyes and head. Probably the catarrh but it does hurt plus 'hear' whooshing loudly, in time with my heartbeat. Don't like that. Still, suppose I'll be sure if it suddenly stops....🤔😬😊 So. Best of 🍀 Luck for when you start. Perhaps you could time it for a couple of days off? Your very fear will have you looking for changes, expecting bad things to happen. It won't be like that. A lot of people - apparently - have zero symptoms. But, as you say, if nurse is to be believed! They are normally spot on, though. Think positive if you can. You WILL be one of the lucky ones! Ensure you eat right before taking tabs, every time. And drink as much water (preferably) as you can. This will do much to head off any nausea and, really, so far as i can tell, this is the only very bothering symptom I've suffered. But i'll know more once i've booted this infection 9 ways to Hell (no idea where that is...😌) Do update me so i can follow your progress, stay warm, stay happy and try to smile through it. Remember, we build it up into a monster. To me, thus far, it ain't so bad! 😉😊

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Thanks for your positive reply :) I hope you are starting to feel better! I go through phases of thinking all positive and then getting very worried. I suppose that's normal and hopefully once I start and it goes not too bad I will relax a little 😎 How do you take your tablets? I'm still hoping my ribavirin will be reduced to 5 a day, pathetic I know what difference is one tablet less going to make right?! I feel like I won't stop stressing until I actually start, unfortunately no way for me to take a few days off to coincide with start date, but will just have to manage and hopefully will be able to. I really hope you are feeling better soon and also that it gets much easier for you once you are over your chest infection, all the best and please keep me posted how you are doing ☺️this forum is a godsend, although I do have a supportive other half, its helps to speak to people who are directly affected. All the best to you, hope to catch up soon ☺️🍀🍀🍀

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