IVIG response

October 28, 2006 at 7:46 am

This is my first post on this new system, finally back after GBS fixed the nightmare they had with some hacker of the system.

Anyway, IVIG is my life saving treatment. Went 35 years with undiagnosed symptoms and in Feb 2004 was finally diagnosed with CIDP and was given IVIg as a trial to see if it help my spin downward. Bottom line: got up out of the wheel chair that day, spinning 24/7 reduced to mild dizziness, electric shocks reduced to almost nothing, sore skin reduced, chest pains stopped, breathing improved, and what have you.

Now after getting IVIg for over two years plus, I would describe my reactions to it as a crooked bell curve. I get 40 grams every 21 days and I immediately notice my feet changing from numb to thick rubber or thick rubber balloons, increased feeling of pressure pain on urination, breathing better, and I spinning sensation really is less and I stop running out of breath on talking, but it does not seem to have any effect on the feeling of numbness and the sense of fatigue and exhaustion still has the same four hour cycles requiring that I rest for a hour or so.

Then for two days after I get IVIG I actually get feeling increasingly tired and exhausted and on the third day I begin to feel much better and continue to feel better up to day 12 when I seem to peak following by a very slow up and down increase in symptoms until I begin to have trouble breathing and talking at the same time just before the infusion and sometimes on the 1st day of the infusion they give me oxygen and that really helps but by the second day I am okay again.

It took a long time for the doctors to figure out that I needed to have the IVIG infused at no greater rate than 30 ml/hr with lasix before and after otherwise I would begin to drown in the fluid volumn. After changing to the Gamunex brand that is premixed and less fluid volumn I had less reactions and seemed to tolerate the infusion better.

Anyway, IVIg is giving me life and a chance to help others and write my book on my experience with a focus on helping others cope and beat CIDP.

Blessings to all…it is good to be back.