Azathioprine

[Price Wooldridge]

Hi Joanne! I don’t know the dosing for Ruzurgi, but I take Firdapse, both of which have the same active ingredient, amifampridine. With Firdapse the maximum daily amount is 80 Mg, often given as four 20 MG doses. For me, it’s 15 MG four times a day, so I’ve got a little “room to grow” if necessary. If Ruzurgi follows the same dosing, it would seem you could titrate higher if needed. That’s a question for your neurologist. It’s generally acknowledged that amifampridine has a half life that diminishes in 4 hours or so. The other medication is an immunosuppressive drug, and this class medication can be used for Myasthis Gravis and LEMS amongst so many other problems. I’ve never been on an immunosuppressive drug, and will be interested to read any comments you have on its effectiveness when you have some experience with it.

[Joanne Evans]

I was on prednisone previously but the side effects were to harsh.

I am really trying for an ivig but my doctor doesn’t seem to want to go that route.

thank you for your information. I would of course talk to my neurologist before changing any medications.

[Price Wooldridge]

Joanne, I’ve been on immunoglobulin for quite some time, and it’s been a major part of my plan. Of course I don’t know your particular medical picture, so it’s hard to comment how it might or might not be a fit for you. I understand your reaction to prednisone. It is a powerful anti-inflammatory, very effective in short courses of treatment. I’ve used it many times for asthma and gout flairs. Long term continuous use of steroids does however bring with it some significant issues. Those include weight gain and facial changes over the long term. For these reasons I’ve ruled out long term use of steroids. Keep us posted on your progress!