Your Replies

  • September 21, 2021 at 10:55 am

    I’ve had CIDP for 45 years and used Prednisone for about 15 relapses in the first 38-40 years.   For the last 3 years, I have been on SubQ IG and doing great.  2 years of IVIG before that was good, but the monthly infusions were more roller coaster.  I got the Moderna vaccine in March and April.  A minor 1st and robust 2nd shot.  No complications and no after effects.  So far, I have not had Covid. I am not seeking a booster shot and do not consider myself to be immune compromised, though I do run low on my WBC count.  Seeing a hematologist to figure out if this is related to Hizentra or something else.

    August 15, 2021 at 11:19 am

    Late Response: I live in Brevard NC, and use Dr James Patton at Asheville Neurology He seems  knowledgeable and has retained me on SubQ IG.  There is also a good GBS CIDP group in the region.


    next Chapter meeting


    August 15, 2021 at 11:15 am

    I am on Hizentra.  To allow a better comparison, I would share that I am 180 lbs and 6 ft 1 inch, so within a good BMI range and not overweight.  Fighting CIDP and trying to maintain some level of fitness has me pretty lean, and I do not have any SubQ suitable areas on  my thighs, arms, shoulders, chest etc.  I do however have enough belly fat that I infuse there.  I started with 4 needles, but moved to 6 needles, so spread out the infusion better, so that when I infuse my 30 grams/150 ml, I am only putting 25ml/site.  I infuse Sunday, and then my belly grows on Mon and Tue as more fluid is drawn into the area (osmotic pressure for diluting the IG), my belly gets smaller Wed through Sun. Skin is moderately loose during the latter part of the week.  I think if I went 2 weeks or more, it would be “normal”  I actually enjoy being a little loose in the belly, since it helps the infusion.  No bruising, and no leakage.

    August 15, 2021 at 10:58 am

    My case of CIDP involved recurrent relapses of the left 6th nerve causing double vision and weakness of muscles around the left eye and involvement of the trigeminal nerve, on the left side, which gave me a numb jaw, and left side facial muscles, a numb tongue, and some slurred speech.  I just considered this another CIDP attack on a nerve, in addition to the other limb weakness.  I felt like the facial numbness occurred during more extreme relapses.  Thankfully in remission for several years with Hizentra.