I believe I now have full blown CIDP
AnonymousOctober 22, 2007 at 10:14 am
I have not contacted this site in over a year. I am 73 years old. My CIDP is now in both legs – burning sensations in my legs, my feet feel like I’m walking on gravel, and because of weakness in legs and extreme fatigue, I lose my balance and sometimes fall. I must always walk with a cane and am now depending more and more on a walker. I did try (over ten years ago) the IVIG treatment. Underwent this treatment for approx. 3 to 4 months and I did not see any positive results. Then my doctor took me off the IVIG because my insurance would no longer cover. I had Lumbar surgery a year ago (pins were inserted). Now I am experiencing back pain again (CIDP related?), but my surgeon says arthritis is causing this.
Has anyone had success with IVIG treatments. Since I’m considering trying it again? Thanks for any help you could give me.
AnonymousOctober 22, 2007 at 10:28 am
It does sound like you probably have CIDP, but a very slow progressive type. The reason IVIG didn’t do much for you in the past is that it tends to work mostly for people who have the relapsing/remitting CIDP, & not so well for those who have the progressive form. I would maybe try an immunosuppressant or even a short period of time on prednisone. But you could try the IVIG again, as you have nothing to lose.
AnonymousOctober 22, 2007 at 7:51 pm
Hello, I just wanted to tell you that my IVIG does help me. Like Pam said
above, it does depend on whether you have the relapsing or progressive form
of this disease. Mine is relapsing…but, I have no pain, no tingling, or any
other residuals of that type. However, I am in a wheelchair, don’t drive any
more and can stand up temporarily for a few minutes at a time…I can get
in and out of a car, but prefer not to drive.
I only take the IVIG at 50 grams, in one day, at home through a homehealth
agency. A pharmaceutical company drops off the meds the day before the
infusion and I keep it in the refridgerator until the nurse comes, the next day.
It usually takes 6 hours to infuse…it comes already prepared in an IV bag.
I was on prednisone and cellcept for three months, but got off because my
body kept reacting to it badly. So, between my vitamins/minerals and IVIG,
that’s all I take…it works for me.
Reading all of the other posts, you will find that each person has a different
solution of meds that works for them – due to the different variants that they
have from this disease. Unfortunately, it can be a trial by error test to see
what works the best for you.
Good luck with the IVIG…
October 23, 2007 at 8:01 am
I have the progressive form of CIDP, I do IVIg infusions every 5 weeks with 1000 mgs of Cellcept twice a day. It seems to keep the symptoms down to a dull roar, I still have the numbness,tingling, etc., just not as bad as without the above treatment. We were doing the solumedrol treatments but they didn’t seem to work as well. Hope this helps you.
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