Short Remission Time

I assume you had plasmapheresis. My experience with PE is 5 days in a row every 4 weeks. I thought this was the standard for this treatment. For me it worked well and kept me basically symptom free. I am on medicare and they have always paid their % of the PE with my Medicare supplement picking up the rest.

I have been on PE and/or IVIG for 19 years at this interval. Has worked well.

I hope you get on a treatment plan that works well for you.

My current “Medical Plan” seems to be working, i.e., skipped 3 relapse cycles so far (knock on wood). It is 200 mg/day on Imuran with 2 days of IVIg every 30 days. I am also weaning off of Predisone, currently at 50 mg/day backing off 10 mg/day per week. Backing off on the Predisone maybe the crap shoot.

It is easier to qualify for SS disability if you have greater disability and are closer to full retirement age than others. I applied when I could barely walk and was only a year and a half from full retirement, and had no trouble qualifying.

Qualifying for disability is not always an easy task for many of us. I was denied when I first applied and again on my first protest. I used paid help from a person who had experience dealing with Social Security disability to help improve my chances of getting approved. Finally on my third (grievance complaint) attempt, that was conducted via a phone interview with an agent from SSA, I was granted disability.

I tried to make disability coverage retro-active to when I became disabled with CIDP, but they wouldn’t do that and I lost several months of income. I found out later they no longer grant retro-active disability coverage.

Start with the on-line application to help speed things up a bit: http://www.ssa.gov/applyfordisability/ There is a lot of red tape involved in filling and you will have to gather documents, and then wait for their large wheels to slowly turn before you receive a response.

I would advise filing right away for disability and being persistent in the face of rejection.