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Hi there, not posted in a while but looking for some advice.


To treat my SLE I am currently using methotrexate along with indomathicine and prednisolone. I feel that after 18mths that it is not working well enough for me.

I have tried mycrophenolate, azathrioprine and cyclophosphimide in the past and they did not work for me either.

I have a consultant appointment tomorrow and I am going to tell her I am not happy on methotrexate anymore. Since I have moved house, I have moved consultants and she has admitted to me that she is not an expert in lupus....!!!!!

The only other medication discussed in the past was rituxamab. Does anyone know if it is licienced for use in lupus yet, as I know there was a funding issue with my old hospital? Has anyone had it? How did they find it?

And....any other meds available for servere lupus that you know about and I have not mentioned above?

Thank you for your time.

Louise
 

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I have had quite a bit of rituximab - I had to qualify for funding for it (basically I had to have severe life threatening disease). But, criteria is different from country to country, and seeing you are in Scotland then you need to find out what the criteria is for you locally.

Rituximab has been moderately useful for me - it has helped in some ways, not in others. Since this last dose (a couple of months ago) I have had quite a few problems with my lupus which has been very disappointing.

hth

raglet
 

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How about discussing CellCept? I have been on it for a while and find it has been quite effective. It may be easier to get, I did not do well on Metho, Imuran or Arava.

Hope this helps a little.

Stephanie
 

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Hey Louise,

I too have gone through the azathioprine, cellcept, cytoxan, iv pred, oral pred dance quite a few times with very bleak results.

I have gotten rituxan which helped me somewhat after the first infusion but I proved to be deathly allergic to it during the second infusion so a repeat infusion has not been discussed since.

What kind of organ involvement do you have? I had cns troubles mainly and the only thing that has really, truly and drastically helped (although I did not get it for lupus but rather for c-aps it helped the lupus too) was plasma exchange. I don't know if and when plasma exchange is done for lupus alone but I do know that in my case and whilst the first rounds of it were always emergent, the last rounds were scheduled in such a way as to be a couple of days before my scheduled cytoxan and my doctors felt that gives cytoxan a better chance to work (as cytoxan gets the chance to "attack" a body without any auto-antibodies so shortly after plasma exchange). No idea if this applies for severe lupus by itself, but it might be worth asking about...

Best of luck for your appointment tomorrow! I hope it is productive and helpful for you so that you can feel better soon! :)

:flowery:

Zoi
 
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