has anyone in the writington,wigan, leigh an... - Vasculitis UK
has anyone in the writington,wigan, leigh and ashton health trust been prescribed retuximub or cellcept for wegeners???........georgia
If you let me know which hospital you go to gsmith I might be able to help...
all the best
Susan
i go to writington, dr patachadeah,i am currently having a flare and john dosent thik cyclopossimid is the best thing to i wanted to find out if my health authority uses the better drugs georgia
Are you going to the Merseyside Cheshire N Wales support group meeting..you might meet someone there who is having this type of treatment..
hi Georgia, Are you being refused it there? It would be interesting to know if that's the case. I was refused it at the hospital I was going to then even though I'd had a couple of infusions of it there only a couple of years before and said he would have to ask another consultant at another hospital but within the same area health authority if he could get it for me there. The Consultant said that they aren't allowed to give it to WG patients only those with RA, I think maybe at the time it was licenced for use for WG patients but I could be wrong. whatever the reason it's wrong. I did phone my local PCT about it because I thought it was wrong who didn't seem aware of the problem but they did say that even if the hospital said they couldn't give it to me that I could make a request myself to them for funding and that they can then decide if they will fund it regardless, which I wasn't aware I could do. They did say they would check with my doctors that I do need it, which is fair enough, but that it was possible and they'd funded it before but then the Consultant applied for the funding to my PCT. We shouldn't have all this messing though, causes unnecessary stress, like we don't have enough to put up with! My husband has WG too but he's under the care of Addenbrookes and has none of the problems I have here (were not far from you but not within your health authority). I've got lost in the system and had some horrendous problems and i'm not getting any treatment not even the methotrxate I was on never mind the rituximab he said I needed. My GP says he can't give me the Methotrexate because I don't have a consultant who's monitoring the condition, so I'm doing battle again. All so unnecessary! Feeling really ill to boot! Hope you get it sorted! take care,
