Can CIDP change from relapse to progressive
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April 27, 2011 at 2:27 pm
I was diagnosed last year with cidp, it would hit me every few months and make whatever limb it effected useless but it would go away after about a month and i would be ok. I started ivig in december, after getting double vision and swallowing problems, now i’m getting really weak ,losing strength ,walking is becoming an issue and tremors are really bad, it’s not going away and the ivig dosen’t seem to be doing anything. So my question is can cidp change from relapse to progressive , any feedback would be great thanks.
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April 27, 2011 at 3:05 pm
From everything I have read, CIDP can indeed go from a relapsing form to a progressive form. Also, they say it can revert back to relapsing and the progress again. I think they are still many unknowns about CIDP. My husband seemed relatively stable for a couple of years with his q 3 week IVIG and now seems to be progressing again with increased clumsiness and tripping and fatigue.
Laurel -
April 27, 2011 at 4:04 pm
Some questions…
You were dx’d with CIDP & received no treatment until December. How long were you having symptoms before your dx? How long did you go without treatment after receiving the diagnosis?
How much IVIG do you receive per infusion? How often do you have your infusions? Did you receive a loading dose of 2 grams per kilogram in December? What is your maintenance dosage?
You could be progressing because you have not received enough IVIG.
Kelly
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April 27, 2011 at 7:50 pm
Laurel thanks for the info…Emily’s Mom, yeah I was dx’d in Janurary 2010 but was having systoms 6 to 8 months before that just thought it was back issues making stuff go numb and tingley, after i was dx’d i was just trying to ignore the issue i guess till the extreme double vision hit then i started the ivig 4 day loading dose 60 grams i think in dec. then every three weeks after that, i don’t know what the dosage is, i go to the doc on the 9th and i’ll find out and bring that up. thanks
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April 27, 2011 at 8:49 pm
John – Do a forum search for a post about a podcast Dr. Dyck (out of Mayo in Minn) made about treatment options for CIDP. I think you will find it helpful & maybe your dr will even listen to it.
Kelly
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