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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)

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@jgk85

I do and I've had it for about 16 years. it progressed very slowly over the years, but it has really accelerated for the past two years. Maybe age has something to do with it - I just turned 85 this month. But I was always a healthy, active athlete even in my senior years. I was adopted as a baby, so I know nothing of my family history. I had IVIG infusions for many years to keep the CIDP in check, but it became ineffective a year or so ago. So for the last 7 months I've had Plasmapheresis two days a month which seems to help somewhat. But it persists. I've been diagnosed with foot drop in both my legs, the right being the most debilitated. Consequently I have to wear a leg brace to maintain a normal gait. Fatigue is a constant. If it weren't for my pain medication and a prescribed stimulant and lots of caffeine, I probably couldn't function very well. I live alone, and can drive and manage on my own, but for how long is anybody's guess.
This is my first time to post on this site and I guess it's much longer than it should be, but I'm hopeful I can get a lot of feedback from other members who are suffering from CIDP.

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Replies to "I do and I've had it for about 16 years. it progressed very slowly over the..."

Hello, do u mind sharing what the name of your ivig medicine is? I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this.