My mom has CIDP…

    • Anonymous
      December 31, 2006 at 11:50 am

      My mom in law has CIDP and has been on the IVIG (i belive that is the letters for it) for a year now.

      She is getting back very quickly and it doesn’t seem to work but she is still on it.

      Does anyone else know of other things to take instead?

      She also “only” take that drug and nothing else, should she be on things like prednisone or enbral etc.? She seems over inflamed and I suffer from horrible Rheumatoid Arthritis and it just seems that she needs more meds like I do.

      So my questions are:

      1) are there more drugs she should take?
      2) should she see a rhumatologis or does the neurologist really know what he is doing as he is the ony doctor she sees for this?

      I just feel like she isn’t getting proper treatment and she is about to get fired from work for missing so many days due to all the doctor visits and stuff she has to do. And without the job, she can’t afford the infusions.

      Thank you.

    • Anonymous
      December 31, 2006 at 1:02 pm

      Hi there,

      I have been on a combination of IVIG and Prednisone since Nov 2003 when I got CIDP. There are other treatments but usually it’s IVIG or Plasmapheresis and possibly Prednisone.

      You state she is getting back very quickly and also that it doesn’t seem to work. IVIG just helps to stop the attack on the nerves/myelin, it wont actually “cure” her. She will need PT/OT to help her get back lost function as she recovers.

      I have seen a Rheumatologist along with a Hematologist and Neuro all along so I would think a Rheumy should be a part of her team as well. Usually the Neuro. will oversee the whole treatment.

      I am surprised that she has been able to work at all, she should see about getting time off through disability, I am sure her Neuro or another Dr. wouldn’t be opposed to that. It would also help to protect her from being fired and losing her insurance. Let me know if I can be of any help.


    • Anonymous
      January 1, 2007 at 11:43 am

      The bad part is that she takes time off when feeling too sick, time off for the IV treatment days too, luckily she works nights so that her doctor appointments don’t happen during work time, otherwise she would only work 1/2 her schedule if that.

      It’s a horrible cycle and she is so upset and her boss is a horrible woman so the stress is not helping. But she can’t find the assistance for meds, so she stays.

    • Anonymous
      January 1, 2007 at 12:30 pm

      email me: [B][SIZE=1]jerimyschilz at hotmail dot com[/SIZE][/B] and I will try and give you some additional resources that might be able to help.


    • Anonymous
      January 7, 2007 at 2:00 pm

      Sound like when I was first diagnosed…

      When I was first diagnosed 1994, I just got IV-IGG. I “recovered” enough to be sent home from the hospital, but relapsed within 2 weeks. Then I got outpatient plasmapherisis for 4 months 2-3 times a week. I would feel better, but I never completely recovered. And I was feeling less and less better as time went on. Finally I got a real neurologist who started me on a very heavy course of prednisone, plasmaphersis for a week, followed by a week of IV-IGG. It meant I was in the hospital for 3 weeks (they missed some days–long story). I went on disability while I was in the hospital. My boss was unhappy about it, but he couldn’t fire me because I was on disability. 🙂

      I’ve had two relapses in the last 12 years, both minor enough that I’ve gotten the plasma and the IGG as an outpatient. I’m on a low dosage of pred. permanently.

      Good luck to you and your mom! I know it’s hard to deal with when your boss is less than understanding.

    • Anonymous
      January 8, 2007 at 11:08 pm

      First, my advice is to get a second opinion, if at all possible. I’m certainly not saying your doctor is wrong, but I always believe it is wise to do so, especially when you have reservations with your own doctor. A fresh look at it will either confirm your original doctor, or give your mom options.

      Personally, my own regime of drugs is a little different than many I’ve read on this forum. This isn’t to say they are wrong/right, just different for their own needs. I’ve been on IVIG for over a year- from every two weeks to now every three weeks. About 3 months ago, I myself finally got a second opinion from the Cleveland Clinic. They put me on CellCept to hopefully and ideally wean me off of the IVIG. It seems to be working, as my numbness is decreasing and fatigue/muscle strength is a little better. I know I’m certainly not near the worse case in CIDP. But there are options out there with many medical opinions. It seems that people react to different drugs. Finding the right combo of drugs is the battle. It may be good to get a fresh look at your case- as I believe going to the Clinic did for me.

      Best of luck to your mom.