Drugs refused funding...

[JElsom]

Six years after diagnosis of Takayasu's Arteritis I seem to have gone through all the immunosuppressants (aza, mycophenolate, cyclo, MTX) all of which I've either not tolerated or haven't satisfactorily kept it under control. When I saw Dr Jayne in October he was going to try to get Tocilizumab for me but the funding appears to have been refused. They're also not sure they'll be able to get infliximab either and as rituximab isn't licensed for large vessel Vasculitis that might prove difficult too! They said they are pretty persistent and will appeal etc. Has anyone got any experience of the consultant's having to fight for these drugs? Should I expect it to all take a long time? Are they likely to be successful? Finding it all pretty frustrating! Thanks for any feedback.

[valwood]

Sorry can't help, just wanted to wish you the best of luck !

[Sarahjh2004]

Hi

I've had funding refused before. It was for 300mg injections of Omaluzimab every 300. Another consultant from Norwich wrote a paper which had to be published before I was allowed it and I think it was mainly due to lack of evidential material and results.

I really hope that you get the go ahead as soon as possible

Kind regards

Sarah

[Suzym2u Moderator Vasculitis UK]

I am afraid Sarah is correct, lack of evidence can be the deciding factor. The problem is gathering the evidence with something as rare as Vascultis, especially the very rare types.

It is a bit of a post code lottery in the UK regarding funding for certain drugs. In some cases Consultants have to apply to their own particular NHS Trust for each individual patient, it is called a (IPFR) "Individual Patient Funding Request"

Some hospitals such as Addenbrookes, because they are a multidisciplinary Centre for treating Vasculitis, so therefore see lots of patients with Vasculitis, do take part in clinical trials, so you really are in the best place for receiving the treatment you need.

best wishes

Susan

[Daisie4654]

I wish you the best!!! I'm a little sceptic on doing the autoimmune drugs and I also don't tolerate medications of any kinds. I had vasculitis in my 30's. It took 3 yrs to go away. Then arthritis and nerve pain usually goes hand in hand with vasculitis. I took prednisone for 18 months. Dr's won't tell you the side affects cuz they don't know them. I ended up with cataracts in my early 50's. I have ANCA vasculitis AGAIN!!! This time they actually have ways to check the med's out before they give them to you. Check out ALL the facts and side effects as they may do more harm to you then good. Do me a favor and just read the "The Code of Life" by Dr. Ronald P. Drucker. You can google it and read it for free. Your cells will heal themselves if given a chance so do read what Dr. Ronald P Drucker has to say about this and there is a support group through them. Thanks for listening