[mooks]

Hello. hope everyone is feeling not so bad! Thought id write a little update on my Rheumy appointment today and also ask some questions involving meds. Basically he has taken me off Arava. im currently on 30mg daily of prednisolone but he says he doesnt want me on that high so said try and take just 15mg. and i have to wait a month before i can have anything else! this is because we have to wait for a blood test result to see if im sensitive to Azathiprine. and if i am not then i will take that. if i am then its going to be ciclosporin. i know alot of you are on these so if you could tell me your experiences that would be good. Also i said to him "i just want you to fix me!" and he said if he could get Rituximab for me then maybe he could. and he said if aza or ciclosporin dont work then he will write to the pct and ask them if i can have rituximab. does anyone take this? especially interested in people in the uk who have managed to get it. thanksssss
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[flutterbye]

Heya, with regard to rituximab I have been having it for a couple of years, and it has been the best treatment for me, not a 'fix it all' but certainly a 'make it better than it was!'

As far as I know when I got approved for it, the PCT need to be shown that you have been through the procession of treatments and they have not been successfull, and that the prospects with rituximab are better. It took a year for me to get approval for it, the good thing it that here in UK once you have been approved once you do not have to go through the rigmarol every time to get the treatment, for me the progression of treatment was cyclo/steroids, cellcept, and IVIG.

If it is of any encouragement, I have noticed a steady increase in the number of patients you see in infusion ward having rituximab, I think it is becoming more widely used and 'easier' to get the go ahead to use it.

It really has been by far the succesfull treatment for me, I still need high dose steroids now and again, and it seems that my 'b' cells are returning quicker that they were at first.

As to the treatment, it is easier to tolerate compared to say cyclo, it took a full six months for it to start to be effective for me, but it has been great, so I wish you all success, and hope that if your docs go that route that getting the go ahead will not take to long.

 

[roxie_P]

hi
i had some good old rituxnab only 4months ago to sort out the inflamation round my heart and bingo it worked id had it befor for my kidneys but by the time i had it it was to late and am on dyalsis but id say go for it ,

it is given along with cycopsamide (how ever is spelt) in a drip one week then 2weeks later you have some more along with high doese of stediods the docte should do monthley bloods to see if the drug is working in lowering the b-cells in your body,


hope all goes well for you good luck xx:rotfl:

 

[Fairy]

Hiya,
I had rituximab in July. Getting it was easy for me - my consultant suggested it, and I was having it about two weeks later. It didn't involve writing to the pct though, all he had to do was get a second consultant's agreement (and they're all buddies where I am, so that was just a formality really). I think pct's vary though - the joy of the postcode lottery!

It's definately helped - my lupus blood panel results still aren't normal, but they're the best they've ever been, and my kidney function is much improved. I'm still taking a low dose of aza (my bone marrow can't tolerate much of it); between that and the rituximab my immune system is somewhat lacking, so I'm on antibiotics for the foreseeable future. I'm still getting symtoms from somewhere though, but the jury's out on whether they're caused by viruses, the antibiotics or the lupus...

Good luck with the aza - hopefully you can take it, and it works :hehe:

 

[lazylegs]

Hi Mooks,

I too am using Rituximab. In my case it helped stop the progression of the disease. I still have the occasional flare, but nothing like before. I have been able taper down the amount of prednisone I was taking. The biggest improvement was in cognitive function.

Since I am in the US I can't help you with information about the approval process. I did however have to go through a progression of drugs before I was allowed to try it. It is outrageously expensive so it has been limited to those with serious disease.

Take care,
Lazylegs