Reply To: CIDP survey – odd relapse pattern, weakness, exercise effects – anybody else??

December 14, 2018 at 5:01 am

In 2005 I got a flu shot & a pneumonia shot. Shortly after, I experienced ascending weakness that started in my feet & progressed to complete paralysis, inability to chew & double vision. I was very close to being on a vent. For the first couple of years, numerous doctors tried numerous treatments including pheresis by itself, ivig by itself, chemo, steroids & some other drugs, but nothing kept me from relapsing. Extended hospital stays lasting weeks to mos were routine and there seemed to be no rhyme or reason to the exacerbations. My current doc got me when I was circling the drain and did some experimenting. She came up with a regime of 1 round of pheresis followed up with 1 round of IVIG within 24 hrs (the shorter the time frame the better the outcome, so I usually try to get IVIG about 6 hrs after pheresis). She also experimented with the number of days I can go between treatments without eventually ending up in the hospital and determined I need the pheresis/ivig combination about every 7-9 days. 9 days is pushing it, so I get tx on the same day every week and have not been hospitalized for an excerbation in years.

Despite tx, I still have varying periods of weakness. I am heat sensitive and grow weak with exposure, whether it be wearing shoes/clothing that retain heat, having to many blankets on my bed, taking too hot of a shower or being out in temperatures above 72 degrees for to long. The longer the exposure, the longer the recovery takes. Exercise also causes my weakness, in part because of the body heat generated & in part because my muscles fatigue with repetitive motion. Exercise isn’t eliminated, but it’s definitely modified. Other things that seem to have adverse effects include sleep deprivation, salt, diet soda & stress. When I learned to eliminate or at least control some of the variables, the frequency of exacerbations lessoned and the full blown relapses haven’t occurred in a long time.

That’s been my experience. I hope that addressed some of your questions.