I have SLE, RA, Raynaud's, and Epilepsy and I am still not able to get my lupus under control, I am willing to try new methods of therapy but it is hard with all my differant conditions, now and for the past five year's I have been treated with methotrexate, and prednisone. I was on plaquenil for three years before my doctor decided that it was having no effect on the disease any recomendations are apreciated thank you.
I don't know your age, the progression of your lupus, when everything started, type of epilepsy, dosages, etc... so I'm going to take a WILD guess that ALL your conditions are actually SLE related.
Therefore, my assumption that your epilepsy is related to SLE leads me to wonder why your doctor took you off Plaquenil. People with SLE-related epilepsy usually have high anti-phospholipid antibodies, and thus neurological symptoms such as yours. Plaquenil inhibits blood clotting associated with these increased antibodies regardless of its effect on disease suppression. Unless you had some problems with it, I'm a bit confused by this...
Rayaud's is also VERY common in SLE...
Ok, let's also assume that your RA is actually SLE-related also. This would cause one to think perhaps you need a bit more immune suppression...
There's cyclophosphamide, cyclosporine, azathioprine, & CellCept, any of which might be considered... as well as increases in dosage of the drugs you are currently on. (Anything to induce even a temporary remission... )
Plasmapheresis is also a consideration; it removes the cryoglobulins, and perhaps the anti-phospholipids from circulation. Yes, it may seem drastic, but it MIGHT help.
There's also the new biologicals, such as Rituxan and Benlysta... They work against B-cells, which are the primary out-of-whack cells in SLE.
You didn't mention an NSAID. Years ago, that was the mainstay of therapy for SLE...
Finally, keep your spirits up, and stay as healthy as possible, for I see a real cure on the horizon, in the form of stem-cell reconstitution of a normal immune system... And I'm nearly always right about these things... Actually, so far, I've been right every time, and I'm no kid.
In the meantime, it means more immunosuppression, however, and I'd try one of the biologicals, add a NSAID, and think about going back on Plaquenil... (My OPINION, this is. I don't have all the information, so I'm guessing. You should really talk to your doctor at length about ALL these possibilities.)
Treat the autoimmune process of SLE, and you treat all the rest...
Good luck to you!
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