Treatment with Sovaldi for Hep c

[ballie52]

Just thought to let people know at last Nice has recommended the treatment of Sovaldi to all Geno types in the UK..bad news is the NHS have delayed treatment until August due to them not funding the cost of the treatment...everyone now has the chance to cure Hep c for good..great news if only the NHS would act now as some people with cirrhosis need to be treated ASAP to stop progression of the disease....but at least looks like the deadly Hep c virus will be gone for good in the near future...giving all the other liver disease patients a better chance of getting a life saving transplant..good news all round!

[pear-shaped]

This is truly wonderful news... A really degenerating disease... As you say if only the NHS was to move as fast as treatments are available it would benefit all waiting patients...

On the whole brilliant news

[Tatjana]

Does anyone please know if a person is on regular steroids (Prenisolone) if they are allowed to go on Savaldi? I have an appointment next week as I was waiting for Sovaldi but I was put on Prenisolone since my last appointment with my Heptologist.

[ballie52 in reply to Tatjana]

Hi Tatjana i think you have to talk it over with your consultant..but don't see why not!

[Tatjana in reply to ballie52]

Thank you ballie52

[art4949 in reply to Tatjana]

I agree, talk to your consultant...however, sovaldi.com/ will inform you as well. Good luck!!!

[Tatjana in reply to art4949]

Thank you for your help art4849. I have just had an op and am feeling low. I phoned the Liver Department of my hospital and spoke to nurse. She did not know the answer but she agreed with me that my needs for Sovaldi are not as great as others (failed one of the first drug trials) and have had HCV from blood transfusion. She put my appointment back two months with my agreement. Will still go to other appointments because I have had liver resection due to Liver C two years ago. I wish everyone on priority for Savaldi the best of luck.

[Catfishjumpin in reply to Tatjana]

I thought it was extremely dangerous to have liver disease and be on steroids.

[Tatjana in reply to Catfishjumpin]

Catfish jumping I do not remember writing that but what I do know is that I have been and still am on Prednisolone. I think and hope I have been cured of HCV with Harvoni and Ribavirin.

[Catfishjumpin in reply to Catfishjumpin]

Your post I see now is from 2 years ago, wonder why it bounced into my inbox as a new topic.

[bunny2be]

so pleased for you this stuff is incredible

[ballie52 in reply to bunny2be]

How are you feeling now Bunny?...do you still have to take the whole 24wks or not?...i am hoping at least to start some kind of treatment before the end of the year....i did panic and think maybe i might not get the chance to treatment as Geno type 4 was not approved for Sovaldi..but as Nice has given the go ahead for everyone at least i will get it at some point!.....i can't wait to be able to move on with my life after 25yrs of having this awful virus stopping me from living ...so happy for everyone that now people can get on with their lives and that in the next few years Hep c will be a thing of the past at last!

[dizzime]

This also known as Sofosbuvir. If you look on NICE and put Sofosbuvir in search it will bring uo the details. Click on the top link ( ID654) the next publication date will Feb 2015. If you click of project documents it shows all the latest news. Interesting reading for all with Hep c. Sorry to all who already know this but things can be diffucult to find if you don't know where to look. Happy reading. Lets hope we can get this cure soon.x

[tremayne]

Great news..keep it coming

[ballie52]

Great to read all the latest on the Nice web site...does keep you up to date with all that is going on!

[art4949]

Gilead have a combination pill treatment, Harvoni, approved by FDA which has sofosbuvir/ledipasvir...you take this one pill daily for 12 weeks if treatment naive/24 weeks depending on treatment history. Interferon and or Ribovarin is not part of this treatment as trials showed these drugs did not improve outcomes. This treatment is used on HCV genotypes 1a/1b I do not know how successful it is with other genotypes...but with genotypes1a/1b the virus is cleared in 8-12 weeks, with a success rate of 94-99% the side effects are fatigue and headaches. In the USA this treatment is available already for HCV patients.

[hope4tomorrow in reply to art4949]

I am a Brit living in Canada ..Harvoni is cleared for use and covered for funding Geno 1's but not any others ..But the studies are finished on geno3's and they are almost as amazing >. They have just passed sovaldi/Sofosbuvir for geno 3's for funding here with Riba for 24 weeks but only if you have failed INF/Riba and have stage 3/4 cirrhosis/Fibrosis.

There is one other drug passed for use in the USA called the Vikeira Pak /Hlokeira pak (I think a 6 pill pak ) by Bristo lMeyers Squib and a new drug just finishing stage 3 testing called Daklinza all looking great for all genotypes ..so the future is looking better for those of us who have lived with this for so long ,I got Hep c thru a blood transfusion in the UK in the 70`s before I moved over here to Canada The treatment are shorter and have very mild side effects compared to the old treatment..

[ballie52 in reply to hope4tomorrow]

Thanks hope...just saw my nurse yesterday...i do have cirrhosis stage 4 and have had failed treatment before but i will get 12wks without Riba..but will still have to wait for people who have more severe illness to be treated first..but happy to be offered Harvoni at 12wks as from what i have read it still has a high chance of clearing it even without the Riba at 12wks even with cirrhosis.

[ballie52]

We are still waiting for sovaldi in the UK never mind them even considering funding Harvoni..but lets just hope we all get the chance of a cure soon as the NHS decides to give the go ahead!

[art4949 in reply to ballie52]

I sure hope they decide on Harvoni as it means no interferon or ribovarin...both make it tough treatment to endure. and costs the NHS a lot of money with lower success rate because of higher side effects and the need for closer monitoring by liver specialist nurses. Also, patient on Harvoni cured in 94-99% of all cases.

[ballie52 in reply to art4949]

just saw my nurse art..she told me def i will get Harvoni for 12wks without Ribirvrin...just might have to wait a few mths as they are treating severe illness first..although i have cirrhosis i still can wait a wee bit longer..just happy that at last i will be treated!

[ballie52]

No Art..no more Interferon for me ..lost half my hair and skin lesions everywhere and destroyed my thyroid..and in the end after 48wks treatment it came back..so not going down that path again Lol..holding out for at least the sovaldi!

[art4949]

Let me know how it goes ballie. My liver specialist told me no treatment as only HCV patients with cirrhosis decompensated livers are receiving Harvoni (genotypes 1a/b , 3) on NHS. I am not being offered the treatment/cure even though I have HCV? My liver is slowly being damaged by this disease and I do have symptoms..regardless, like you, psychologically, I want to be free of this disease and it is awful to know there is an actual cure but not within my reach after all these years of waiting. I think Cameron is privatising the NHS because unless I pay for my treatment I may never get it unless I become very poorly. What kind of health care is that?

[ballie52 in reply to art4949]

That's strange art as i was told they will get to treat everyone over a period of time..although i have cirrhosis is is not decompensated and i was told i will get 12wks treatment although not right now as they are treating severe disease first...even before i had cirrhosis i was suffering from all the awful symtoms of Hep c too so understand where you are coming from...there is just so much confusion as to gets treatment right now..but as i said i was told everyone will get a chance of some kind of treatment in all geno types..i am geno 4 and being put on the waiting list..as to how long i wait i don't know as i got no time scale for treatment but hoping it will be sooner rather than later..which part of the UK are you from art just curious to know how they are telling people all kinds of conflicting stories!

[art4949]

At the moment, treatment is not being offered to everyone in UK with HCV even though there is a cure for people like myself with genotype 1b (Harvoni). I am being told we have to wait.. until when?..even though NICE has given the NHS the go ahead to use Harvoni (you can visit NICE website, it gives breakdown of treatment recommendation depending on genotype/liver damage/treatment naive..etc) I can understand the NHS needing to put an action plan into place to treat everyone for HCV but at the moment I have not even been told that I will get treatment in the future either.

The only people receiving treatment right now are those patients who are very poorly with decompensated livers...the rest of us are made to wait? I will let you know what the Department of Health informs me. As a National Health Service, it seems to me that if they have a cure for a disease which thousands of its patients are suffering from treatment should be offered asap. This is not a postcode lottery.

So, unless you can afford the treatment privately or have a decompensated liver you will not be treated in the UK if you have HCV on the NHS right now, that is my understanding of the situation at this time. I hope this changes before the end of 2015. I live in the SE of England. I will let you know Ballie, if I am given a date when my treatment begins.

[ballie52 in reply to art4949]

art just to say looking at the guide lines for sovaldi..it does say that they will treat geno type 1 if they don't have cirrhosis as the treatment time is shorter than maybe people who might need a longer course of treatment...with sovaldi they recomend a 12week course of treatment with Riba for people with not a lot of damage ....although the guide lines say one thing i think what is going on right now is very confusing...the recomendation for geno type 1 and 4 is not to treat with Sovaldi or Harvoni because it takes a longer 24 wks of treatment and they will not fund it...when i saw my hep nurse she said that they are treating everyone over a period of time but getting to the most severe illness first...she did say i would be on the list for Harvoni as i have cirrhosis but she was not able to say when...i was guessing before xmas but not given a time scale as they have hundreds of people with severe illness to get through first...anyway art what i am trying to say is don't give up on being treated as i think they will get through everyone it is just a matter of when..it is just a waiting game for all of us..lets hope for not too long.Xx

[art4949 in reply to ballie52]

Thanks ...that is my impression as well..the more poorly you are the more likely you will be treated first. These drugs will cure almost everyone with HCV esp the genotypes you mentioned. The best healthcare practice would be to treat everyone...now...someone like myself would be outpatient probably 8 weeks treatment a few visits to test my blood for viral load and LFT make sure everything is okay. At my age(65)the sooner I am treated the longer I will live without this disease and further risks due to the virus stop with the cure. Wait...and the virus continues to damage my liver, and as I have had this for decades I am like to develop liver cancer, cirrhosis or other digestive disorders...not to mention I continue to live with the fear of passing this on to others and live a restricted lifestyle to keep a healthy liver and... and continue to have brain fog and fatigue. To be free of this would be a wonderful. I think we all deserve this treatment and it is morally wrong to make us wait without clear idea of when our treatment will begin without continually changing the goal post. If this treatment is not offered to me by June or a clear decision by the NHS telling me when...I will sell my house or remortgage it to get this treatment privately...because without my health nothing else matters.

[ballie52 in reply to art4949]

please art i understand how you are feeling just give it a little more time i think as things become more clear you will know how they are planning to treat everyone..these drugs are new and just started in the UK at the moment so things will take time to sort out....don't do anything right now Art i think you are going to be treated just push for it as they are giving the drugs to geno type 1 and 4...as well as others it's just a question of when..i have cirrhosis and i am willing to wait until i get my turn and i'm sure you will be treated..try and be positive i understand how hard that can be when you are feeling low right now...i have a feeling you will get a chance of treatment..it has to be fair for everyone with hep c...as i am sure all hell will break loose if people are not given some kind of chance to clear this awful virus now they have the drugs to do so...chin up art...no selling of your house right now!

[art4949]

Thanks Ballie, I think for now waiting is a good idea, like you say...but after August, I will be working ways of paying for my own treatment if NHS cannot offer it to me then and do not set a date when I will have treatment. I am hopeful