GCA and Tocilizumab funding

[christine2715]

I have GCA and am taking Tocilizumab on the NHS and have received special funding.

I now understand Tocilizumab has been turned down by NICE and that there is an appeal this Thursday. If the appeal fails what happens to people like me who are already on the drug. I am not sure how long my special funding lasts. I am under Southend. It has been a life changer for me - I was extremely ill for over 18 months and I got better very quickly - almost back to my old self. Would appreciate it if anyone knows the answer - maybe PMRpro. Thanks in anticipation.

[PMRpro Ambassador]

No, sorry, no idea until that ruling comes through. Usually patients who have obtained special funding get it left as it is but who knows.

I think it is disgusting that a 40 year old with Takayasu's or 60 year old with RA could have a biologic, a 60 year old with GCA not. In the long term the costs of a GCA patient on pred must mount up to a considerable amount when you cost the rheumy appointments.

I have to say I don't know what the situation anywhere else in Europe is. I meant to ask my rheumy today and forgot.

[christine2715 in reply to PMRpro]

I agree with you - it doesnt make sense.

[DorsetLady PMRGCAuk volunteer]

Hi Christine

Good to hear TZB helps. Think lots will be waiting on appeal results.

As for finding, I guess it depends on the criteria - was it funded for current financial year say, or was it funded for you to complete your treatment however long that took.

I think, inless the appeal is successful you’ll have to wait and see.

Not the answer you want I know

Kate Gilbert may know the answer, she was heavily involved in the appeal process on behalf of the charity.

[SheffieldJane]

So sorry this drug maybe withdrawn for you, especially as it has worked so well. Yours is the first really glowing testimonial I have heard for it’s use for GCA. I guess not many could make a special case. We live in hope. As DL says, perhaps Kate Gilbert will know. Do you have to come off Tocilizumab slowly like Pred? Are you nearing the end of your disease?

What a worry!

[Jackoh]

Good that it has been such a help to you. I suppose no one knows the answer to your question and it's understandable that you are very concerned. You are the first person that I personally have heard of who had approval for this drug in the U.K. Let's hope and pray that for you and others like you that approval will be given.

[christine2715 in reply to Jackoh]

I hope so too - getting the illness was life changing and taking the drug has given me my life back!!

[Polywotsit PMRGCAuk team member]

Dear Christine, Don't worry. NICE have said that their initial ruling won't affect people who are already on TCZ. It's not an appeal we are waiting for but the result of the second phase of consultation. Will make an announcement as soon as we can.

[christine2715 in reply to Polywotsit]

Many thanks Kate - that is such a relief. My white cells are a bit down but otherwise I am fine. They say it might mean that I will try taking it fortnightly. Currently weekly by injection. Have been told I may be phoned on Thursday to tell them my case. Thanks to all for your replies.