Connect
Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions
Hi, I was diagnosed with CIPD as a complication from an unspecified autoimmune disorder. my Neurologist started me on gamma garb IVig last September. Was really working. Then, I started having hives and then angiodema after the 6th month of treatment. I had 3 Angiodema attacks but it was not until the third one that actually caused my voice box to swell and my whole face and hands swelled, that they determined it was the IVIG. They did not happen until sometime after my treatment. I was Ok during. And the first two did not occur until after after my last treatment for the month. The third one occurred Two hours after the first treatment of the month. I was on gammagard, this was the only treatment to work for my CIDP. They are cautiously going to try a different brand, flebogamma. Has anyone experienced this? Should I try this other one? thank you in advance for any information you can provide.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Wow I cant believe you and I have similar symptoms.when I broke my foot the first time, I didn’t even fall, I was just walking and I started to feel like I was going to fall, and my husband caught me.
When we looked down,my right foot was facing sideways, and the bone was coming thru my ankle.
Then that’s when everything went downhill.
Screws and pins and plates were in and out numerous times.
Screws backed out of my heel and bottom of my foot.
As soon as it healed, it broke again., twice.
I now wear an Arizona brace to keep my fused ankle in place.
I was told if it broke again, they could not operate or put any hardware in, so I can’t do much of anything now.
I can only wear sneakers with my brace, and I can’t go to the beach or in the ocean, I’m not supposed to put any pressure on my ankle.
I just passed the 5 yr anniversary of my first break this past March.
I went thru several rounds of IVIG with no improvement in my symptoms,so I stopped it.
I hope it works for you!
Cathy
I’m sorry to say that the IVIG infusions did not work for me.
My latest neurologist felt if it wasn’t doing anything for me,we should stop.
Come August when I see him again, we will discuss options if any.
Right now my right hand has become affected with numbness and tingling, which affects my holding things at times.
Can’t put mascara or makeup on with that hand, also I’m having trouble holding a pen and writing.
I used to pride myself with how nicely I wrote, but not anymore.
My husband has to fill out paperwork for me t the doctors offices,etc,because I can’t.
The whole thing stinks but I keep going, hoping I don’t get worse in the years to come.
Good luck to you, keep me posted!
-
Like -
Helpful -
Hug
1 ReactionWhen I was getting my IVIG infusions I was given a Benadryl one hour before they were started, by my infusion nurse.
Now I know firsthand why.
Please let me know if anybody has gone through PLASMAPHERESIS for polyneuropathy.
You are the first person to post since I joined about 2 months ago. I've been on Infusion therapy since 2017, but I'm still progressing slowly. There's not much info about CIDP on the internet, but go to GBS/CIDP FOUNDATION.
-
Like -
Helpful -
Hug
1 ReactionYes I just started following connect regularly again.
IVIG therapy not helpful, after having many rounds over several months.
Was Previgin 30 mg every 3 weeks IV over 2 days, I believe.
Did not feel any improvement, and it did elevate my blood pressure after about an hour or more of the Infusion.
Infusion had to be lowered until my bp was in safe measurement.
-
Like -
Helpful -
Hug
2 ReactionsI was very interested to hear from you all re your IVIG infusions. 2 years ago, I also was tentatively diagnosed with CIPD and put on the IVIG. I went through 6 months with infusions every 3 weeks, each over a 3-day period. Unfortunately my nerves tests showed no improvement, so the infusions were stopped. Strangely, I did also develop a severe rash during treatments, even tho I was given benedryl and steroids in the iv, but I attributed it to the Gabapentin I was taking. After I stopped the IVIG and switched to Horizant, the rash disappeared. Anyway, I just thought I would share my experience. Wish I could offer a better report.
Similar situation. Top NY Neurologist after many tests said you have CIPD. Prescribed IVIG.
Took infusions for 5 straight days. No pain relief but got terrible rash all over body. Dermatologist prescribed Dupixent twice a month and rash gone, Con side told have to take
dupixent forever. No more IVIG for me not worth the terrible painful rash Guess I will live with CIPD.
-
Like -
Helpful -
Hug
1 ReactionHi all,
I receive solumedral to help with reactions, because ironically I react to Benadryl, so one can work with the nurse and doctors to relieve reactions. The headaches I have are another story. I usually do cranial sacral therapy just before or after, drink 120-150 ounces most of water the day: before, of, and after. I also move as much as I can during. I think it took at least 6 months for the IVig to make a wee bit of difference, I do not have it for PN.
I also did 7-8 mos of IVIG infusions every 3 weeks for 2 days per week.
That had been my second series of infusions,as I had them about a year or so before without any difference in my symptoms.
This was on recommendation from a new neurologist who thought I should give it another try.
I couldn’t see wasting the time and cost on something that wasn’t working, and that was killing my veins in my arms.
I just glad I didn’t go thru having a port inserted, because it would’ve been for nothing since we discontinued the IVIG.