Hopefully on my way to being cured of Hep C

[dizzime]

Hi there. I started the new treatment (Sofosbubir/Ledipasvir and Ribavirin) for Hep C two weeks ago and up to now feeling fine. Had no side affects and I am feeling a lot better. Whether this is because I have told myself I am going to get better I don't know. Had my liver transplant in Aug 2013 and been rejecting on and off since and have been fighting to get this treatment since it had been licenced. Had to re refer myself back to the infectious disease clinic who then put my case forward. So happy when the panel said I could start the treatment but it was 50/50. I will keep posting how I am going on with the drugs. My ALTs are still very high at 336 and my Hep C IU/ml log us 7.77 I think this is the one I must watch . Fingers and toes crossed that it works but I am positive it WILL work. I have seen a lot if postings about post op itching, I found the medicated powder-Lanacane helped me enormously. Good luck to every one and keep smiling

[scotty40]

Glad to hear that you feel better already. I am still waiting for the treatment , I would definitely be keeping an eye out for your posts. All the very best in your treatment. good luck

[Hidden]

youve been through the mill, good luck!

[art4949]

Good luck with your treatment, dizziness. I have HCV genotype 1b but have been told I will not receive treatment on NHS..even though there is a cure for HCV using Harvoni recommended by NICE. Here is a healthcare system that forces patients to stress out trying to get treatment to cure their disease. Unless you are well off and can afford the £43,800 price tag for a bottle of Harvoni pills from Gilead.(in my case)You can get the drug free in developing countries from Gilead. I am so glad you are receiving treatment...After your transplant you should have been offered this treatment once it was available? Is anyone else mad about this refusal of treatment for patients infected with HCV unless their livers are decompensated?

[dizzime]

Thank you all for your good lucks. I had to keep nagging and mithering to get the treatment. My TX Hosp kept saying I didn't fit the criteria yet. I have had 5 biopsys since my TXPlant the last one going terribly wrong, internal bleed and everything they had to go in and get me glued up. Not nice. But they still kept saying not sure what the problem was ie rejection or Hep C. To me it's obviously rejecting because of thr Hep C -simples! Lol. As I put earlier I decided to take things into my own hands and re referred myself back to the infectious desease clininc in NMGH. They have been fantastic, did a fibro scan which showed 12.3 which is border line cirrhosis and they immediatly put my case foward and we won. I had not even been given a fibroscan before so this must be quite new. It is maddening that you have to stick your head out above every one else to get the treatment you need. It should be available to all. Surely it would save money in the long run. Good luck art4949 I hope you get your cure soon. Keep smiling all.

[Dan68]

Hi Dizzime,

I was lucky and had cleared my hep c prior to transplant.

I had to undergo 12 months of interferon in 2012 with only a 75% success rate. Very difficult times and something I will never forget as it made me so ill but that was the treatment at the time. Basically this finished my liver off and I was told I had cirrhosis then liver cancer. As I'm in a common blood group I was put on the urgent list and received a transplant 6 days later and apart from adjusting meds I haven't had a problem. The whole idea was to clear the hep before my liver deteriated any more and then receiving a transplant so I had cleared the virus before transplant to give me a better chance of recovery and survival.

I am under Birmingham and see a professor Mutimer and they have been brilliant.

Hope everything works out for you as it's always a battle to get funding for treatment esp when it's a new one. I was the first person in Northamptonshire to get the treatment I had as that was new at the time.

Good luck with everything

Danny

[dizzime]

Thank you Dan68, I was tried on the intetferon/ribavirin pre transplant but because my liver was so bad it just made things worse so I had to be taken off and then things just got bad ending in the transplant. It was very touch and go and I am very lucky to be alive the team at Leeds have been wonderful. I just don't understand that when so much money has been spent on getting a new liver that you are then left even though the new liver has been re infected and, I have been informed, it gets a lot worse quickly in a transplanted liver. Surely it should be treated as a priority and I do not want to go down that road again. Any way, hopefully, I am now on the road to a full recovery and will live a long and happy life. I will keep posting as I progress with the treatment. Positive thoughts as always

[Dan68 in reply to dizzime]

Good luck. How long does this new treatment last?

Difficult times but hopefully all goes well for you.

[dizzime]

Could be cured in 12 weeks but could take 24 weeks. They don't order the second batch until necessary but hopefully I will not be needing it. Fingers crossed