Time to call Neuro or deal with it?

I was Dx’ed with CIDP in July 2102. Since then I have completed 12 months, every 4 weeks IVIG. Other than the usual infusion bothers, I have seen great improvement in my overall strength and general well being….until this last infusion on August 16th. I am weaker then ever before, I am more tired and showing most all my original symptoms i.e. muscle jerks, cramps etc.
I am delaying my call to the neuro at this point, and would like to know if this a worry or just part of the fun with CIDP?
Thank you.

It sounds like it is “the fun part” of CIDP. My husband has good and bad months after treatment. I would not discourage you from just letting your neurogolist know so they can monitor your CIDP. And since it is different with everyone to make sure that it is"ok" with your doctor that your condition has changed. Best wishes! I hope you feel better soon!!


I’m sorry that you have had a setback. This disease is such a battle.
Call your neuro today. I have been on ivig for 4 years and my Dr. has had to make adjustments a couple of times. Several monthd ago I had a setback so he moved my infusion up one week (3 weeks instead of 4) it made a world of difference. It was only for 1 infusion and then I resumed the 4 week schedule

I just had my check up last week and my Dr. reminded me that he doesn’t want me to go backward and that he’s only a phone call away. Take care.

I can only tell you from my own experience. Maybe the doctor needs to play with the dosage and/or frequency of meds. I get an infusion of 80 grams every two weeks.



My experience is that it might be "part of the fun", but you should let your doctor know without expecting a magic wand. I'm on 1500ml IVIG over two days once a month. Sometimes I show improvement, sometimes the pain and numbness seems to get worse. My doctor examined my hands and feet and offered the somewhat contradictory diagnosis that I haven't progressed "very much" over the last six months so we're going to stick with it unless I get worse. Which means I'm going to live with the pain and clumsiness.

Every case is different. Don't be afraid to suggest changes.

I had an IVIG treatment last Wed and Thurs, tonight I am burning up. It used to happen on the last day of the infusion. Then 2 days after, now it looks like there is no set pattern, and often no symptoms at all. Today I was all over the place, staggering with back pain and useless legs. I am progressing with the disease faster than ever before. Sorry I have no better news.


Happy...but not tonight...!

So sorry you are having problems, it gets very discouraging when new symptoms show up or old ones come back. I was diagnosed about a year ago with GBS but when symptoms returned it was changed to CIDP and 20 mg. infusions were begun every 4 weeks but did not do the job. I complained and finally went for a 2nd opinion and the infusions were changed to every 3 weeks but for 65 mg. and I have regained about 80 percent strength. Still get very tired with very little exertion. Have been advised to follow exercise regime daily but don't have enough energy to do my housekeeping so have opted to do the housekeeping instead. During the past two months I've been experiencing a rash and some very brief dizziness but usually have a couple weeks between infusions when I feel fairly strong and am able to get around and enjoy life.

Keep up the fight, Minnie

Hi, so sorry you're having issues. I have had CIDP for 2 years, and on IVIG for 19 months. I do pretty well (no pain, but weakness and very difficult to climb stairs). I sometimes wonder if one bag of "the juice" is better than another. Had a GRAQT month in July, and have been dragging all month in August..... just hard to tell. I'm on IVIG every 3 weeks. Good luck, Barb

Hi,The worse relapse I have had was after the hospital change the brand of IVIG and it took months to get back on track with the old brand.,A few months ago I was going down hill again and my neuro changed it again and I'm feeling the best I have in five years. Let them know! And hopefully while we do have relapses it is possible for some of us to come back up again. Good luck.


I have been treating with IVIG for almost 10 years. You go through the ups and downs. You may not realize it but you could have been fighting a cold or an infection which effects how the treatment works. Remember its your immune system so if you get sick it takes away from the effectiveness of it. STRESS another big contributor to how the treatment works, I find this works against your treatment. Finally if you go out to a party and have a few drinks can also effect how your treatment works.

Do not be like me keep up with your Neuro, I just went back after 5 years (as I had no problems) but they need to change dosages as you get heavier or lighter in weight and based on your age.

Good luck