PDA

View Full Version : CNS lupus - med options?



Dar
05-25-2010, 02:19 PM
Have had it for a little over 10 years now. Prednisone and Imuran won't touch it.

Cytoxan did well for a while, but lost a lot of it's effectiveness. CellCept helped very well for a few years, until my ex-rheumy too me off of it and it hasn't worked as well since (and probably accumulated more permanent damage).

New rheumy has tried Rituxan (got a decent response, but still struggled), IVIG also helped (still taking it, so don't know full affect).

Besides plasmapharesis and experiment stuff, it there anything I'm leaving out that could be tried with reasonable expectations of it having a real effect?

Thanks.

rob
05-25-2010, 06:00 PM
I've read that the drug Neurontin is prescribed for CNS problems from Lupus. I take it to control the pain from Trigeminal Neuralgia. It works well for me, and has eliminated much of my nerve related pain. I've read some reports from CNS Lupus patients, and many say that the drug really helps with their various CNS problems. Food for thought anyway.

Rob

Dar
05-26-2010, 08:04 AM
I am actually taking Neurontin to help with movement disorders and stuff, but I was hoping for other treatment options that would help with the disease itself, not just the symptoms. If you have any ideas along those lines, would love to hear them. I wonder if since I haven't had Cytoxan, it might be effective again (although my rheumy doesn't seem found of going there).

Otherwise I'll have to treat with symptomatic meds like Neurontin, and I'm already on high doses of a few of those.

Thanks for the reply.

Bonita
05-26-2010, 09:35 AM
I do not know if there is any drug that takes this diease away but only helps to control the symptoms. Bonita

rob
05-26-2010, 10:54 AM
I do not know if there is any drug that takes this diease away but only helps to control the symptoms. Bonita

If anything is ever discovered that takes this disease away, I'll buy a keg of the stuff and throw us all a party, on me!