Short Remission Time

    • August 11, 2013 at 8:44 pm

      Hi everybody I had plasmatherpy on July 9th I felt great afterwards each week brought better results, but after a tough week of work I feel like I did before the plasma transfer. I am looking to find a job thats easier on my body or go on social security disabilty. I have only 8 months of cidp but don’t know how ss will react about my application not sure if I meet the qualifacations.

    • August 11, 2013 at 8:53 pm

      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.

    • August 11, 2013 at 9:37 pm

      Doc mentioned he might have me try the IVIG treatment next, I only had 3 plasma treatments in 1 week with no follow up treatments planned. I need to educate myself on the disability income not sure how much longer I can work.

    • August 12, 2013 at 2:46 pm

      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.

    • GH
      August 13, 2013 at 12:29 am

      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.

    • August 14, 2013 at 12:30 am

      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.