sporta
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March 31, 2017 at 1:02 am
I had asked my previous neurologist about PE and he was not even receptive to it at all. I intend to ask my current neurologist about it when I see him in 2 weeks…tired of the IVIG ups and downs…
March 30, 2017 at 8:10 pmI have to agree with BryanF on this one…seems that the harder I push my body the harder the CIDP pushes back. I have days that I feel like I can tackle Hell itself with a bucket of water and the next…boom…down for the count for the next 3-4 days. Its been 1.5 years now approximately and I am still not even close to normal for me. It’s driving me nuts that things I was able to do and work hard seemingly only “yesterday” now are so far out of reach. Hearing about the 3 year recovery window kinda sucks honestly. I know I am not a patient person but dang it I want my life back.
March 30, 2017 at 7:57 pmBryanF,
I was supposed to be getting IVIG one week on four weeks off for 2 consecutive cycles of treatment. However I never seemed to get it…it was either the insurance company issues or the Dr. “firing me” as a patient. Long story short my current maintenance routine has been April 4 days (2 on one off 2 on), December (2 days on, one off, 2 days on, two off and one day on) and finally one day of treatment Tuesday the 28th. I am not sure of your experience with IVIG as I have just stumbled on this topic/board but I have found that I needed the break otherwise I get a wicked migraine that even 3 doses of Imeterx (sp?) won’t even touch. I end up in the ER getting IV fluids and dualauted. With my last full 5 day treatment (had to be stretched out to 7 days due to the weekend) I was being pre-treated with tylenol, am IV steroid and IV benedryl. I would also follow the same routine after treatment to prevent (or combat) a migraine with the exception that at home I would use Percocet and Ibuprofin for the headache.Good luck with you treatment and if I can be of any help please let me know.
Steve
