Concerned About The New Hep 'C' Drugs & Treatment

Hi everyone. I had my liver transplant on March 8 2016 after only being on the waiting list for 7 days, I was only in hospital for 8 days. The reason for the transplant was liver cancer (HCC) after having Hep 'C' for several years. The transplant was performed at QEHB by Dr Thamara Perera. Side effects consisted of anemia, enlarged prostate gland, diabeties but now feeling fine after taking iron tablets for 6 weeks. My blood sugar levels are getting back to normal after being taken of the steroids. I am due to start another Hep 'C' treatment when my blood gets back to normal after anemia. Anemia is the biggest problem for me which I suffered on my last 2 treatment courses approx 10 yrs ago. After reading the article on the following link, I am slightly concerned with the new drugs being available. Have any of you found any problems obtaining the new drug or treatment? thecanary.co/2016/07/28/the...

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  • As you have just recently had a transplant at high cost per person ratio, I think you may find they will put you high on the list to get the new drugs . They have very little side effects, headaches and low key depression in some people. There is also a new one on the market , not sure if it is over here yet , for all genotypes. Will try and find the link for you.

  • Thanks Bermuda will check the link later

  • hepatitiscnewdrugresearch.c...

  • Hi Dave, my husband recently cleared hep c virus, he was prescribed sofosbuvir and ribavirin , he suffers from severe anemia so it was a challenge, one of the side effects of ribavirin is anemia so early on in the treatment the dosage was reduced. He had genotype 2 . Previously he was too ill to undergo treatment . He was considered a priority for treatment , we live in Scotland , wishing you a good recovery 🙂

    Ps following treatment there has been a significant improvement in his bloods , he has not required a blood transfusion in the last 6 months , prior to treatment he was receiving blood every 6/8 weeks.

  • Thanks Blue-bells for your info much appreciated. My first treatment was pegylated interferon and ribavirin which was a failure, I was taken off the treatment after a few months with severe anemia and had 2 blood transfusions. The second treatment was with the same drugs but a weaker dose. I was taken off again because of the same side-effects. My consultant at the time informed me that I should wait for a new trial drug which was being developed. That was 10 yrs ago. Had the results of my blood test today which was taken last thursday. It showed that blood levels have gone up to 13 from 8 the target is 18. So it will be at least a month before I start the Hep 'c' treatment, I reckon.

  • I suppose the length of time of the sofosbuvir and ribavirin treatment is crucial for me. I have read that the above treatment is much shorter than the interferon and ribavirin drugs. So hopefully I will scrape through before the anemia kicks in.

  • My husbands treatment was over 12 weeks 😊 Best of luck !

  • Thanks again Blue-Bells. Can't remember how long my last treatment was meant to be, think it was 6 mths

  • It depends upon genotype and treatment history to the get the correct meds and the length of treatment . Presently some treatments have been for 12 or 24 weeks. Alough with the newish drug which suits all genotypes they do think 12 weeks. How long we have to wait for the UK to agree to use it though is anyone's guess.

  • Sorry forgot to mention it. I am genotype 3

  • Hi I'm geno 3 n had the hep c treatment n cleared it no real side effects at all .got diagnosed with anemia after treatment just stay positive n you'll be alright I've since had a liver transplant n alls going good on that part just having a few difficulties with my kidneys,good luck with all

  • Hi retwos. Glad that everything is going fine for you, we are both in the same boat really. Thanks for your info which is encouraging and much appreciated.

  • Hi there, sorry, just seeing this. I had the new Hep C treatment, last year. it was 12 weeks, a pill a day. No side effects. 9 months later and I'm still all clear. I'm a genome type 1.

    Ive heard there have been problems for type 3 and they are working on meds, new meds for that treatment.

    I ALSO heard that probably within the year a NEWER set of drugs will be out that will be even better, including for type 3. (I heard that from one of my nurse specialists at Addenbrookes whose main work is in Hep C, so I trust her :) )

    I hope this helps!

    they did also prescribe the riva. with it, but that my my tummy feel yuck, so I came off of that part after 3 days. the rest was easy peasy!

    I have a new liver and it is showing no signs of the disease.

    Hope any of that helps.

    cheering you on!

    XXX

    Kimberly

  • dckimberly. Thank you very much for the info. I attended the hepatology clinic (QEHB) on Wed 3/8/16 to see my consultant.

    He advised me to wait a little longer for treatment instead of rushing it, as there is a new drug on trial which would suit me better. I am Hep C geno type 3.

    My ankles have been swelling for the past 3/4 weeks he informed me that it was caused by low blood pressure so they have reduced my medication.

    Apart from that I am doing fine now, 5 month after the transplant.

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