[Maria Thompson]

Hi there,

I just wanted to ask if any of you are taking efalizumab for discoid lupus. I have just come back from seeing my dermy and he has told me that this is now being withdrawn Oh NO! (he struggled to get me the funding for it as it is really expensive - for infor I live in Solihull, in the West Midlands).

I have really been struggling with discoid for 4 years. I am now adding plaquenil 50mgs a day to my 50mgs of mepacrine which I already take. (I originally tried this a couple of eyes ago of a dosage of 200mgs but I kept getting double vision so hence the really low dose now!) My dermy is really hoping this is going to do the trick.

I just wondering if there is anything else out there apart from efalizumab which works for discoid?

Take care, love Maria x

 

[Merle]

Hi Maria

I don't take Efalizumab, but out of interest googled it. I came up with this on Wikipedia:

"Known side effects include bacterial sepsis, viral meningitis, invasive fungal disease and progressive multifocal leukoencephalopathy caused by reactivation of latent JC virus infection.
Due partly to the risks of PML, the European Medicines Agency recommended in February 2009 that efalizumab be suspended from sales in the European Union, deeming that its benefits no longer outweighed its risks."

Take care

Merle

 

[Maria Thompson]

Hi Merle,

Many thanks for that, I can how this why this drug is being withdrawn.

Take care, Maria x