My rheumy consultant has been trying for months now to get the funding for this drug (Rituximab). He has appealed three times now without success, so I was wandering how the others have managed to get this drug, was it easy or difficult?
I have Mixed Connective Tissue Disorder (SLE) with fibrosis of the lung. I am now using ambulatory oxygen so I can have a normal life (if that is possible). I also have all the other lupus symptoms and have had all the drugs that are given but nothing has helped. I am just on 10mg of Prednisolone now.
Right now I am going through a flare and yet another urinary tract infection.
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Maureenpearl
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Good luck with your application. I had to write to my sister's MP, her GP, her consultant and the NHS trust to get her funding for her severe arthritis (this was on the advice of her consultant who wanted to prescribe it). It's all down to cost, as usual, but the NHS can still fund breast augmentations for wannabee glamour models!
Hiya i know a couple of fellow lupies who get this drug - as far as i know they were given it because all other maintenance drugs failed to work effectively. I met a girl at a lupus meeting who gets this she is only 23 yrs and has no lung/heart involvement. I myself have lung scarring/heart involvement but i haven't been offered this drug and im starting to wonder why, as people that are on it tell me it has transformed their lives whereas i still have quite bad symptoms with lungs and im scared of further damage. Im def gonna mention to Rheummy. Keep fighting for this drug its disgusting with your lupus so severe that you have been turned down - dont give up!
Thanks all for your advice and encouragement. My rheumy is waiting for a colleague who is higher up in the profession to pull some strings. I just keep praying the funding will become available for this drug and that it will work and I won't be disappointed.
I first had rituximab in 2005 and like you there was a dispute over which department was going to fund it. Now back then this drug had only been certified in the USA but had good results. At the time I found out it cost £4,500 per infusion and each individual needs 2 infusions which is 9k in total!!! But hey as they say you can't put a price on someone's life. As it a form of chemo it can cause you to be very sick. When I had back then I had four years of great remission. I can describe it as having a body transplant. Then in 2009 I had it for the second time no arguments.
I just hope you get the outcome you desire. Living with a chronic condition is not easy and we all deserve some form of quality of life.
Hi, i'm also struggling to get Rituximab which is so frustrating. I'm 27, have had lupus for nearly 12 years and have severe kidney involvement now, teetering on stage 4 kidney disease. Unfortunately I had awful reactions to Myfortic putting me in hospital and now am back on standard dual therapy of steroid, azathioprine, hydroxychloroquine and tacrolimus (not to mention others). My renal consultant told me there would be no point him applying as the referral would just get denied which makes me so angry as our quality of life is seriously affected by our disease. I'd pay for it myself! But you're not even allowed to do that?! Anyway rant over. Really hope you get some funding for your case soon and if you manage it please keep us all updated with what you had to do to get there. Good luck and best wishes with everything.
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Seriously I am half an inch from giving up. If you're reading this PLEASE reply. I am at a loss.
Am I alone?
Am I Petty?
New drug treatment for Lupus?
Looking for help with which drug to go for.
