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.
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Hi Tab, welcome to Connect.
I’d like to introduce you to a few other members who are talking about CIDP (chronic inflammatory demylenating polyneuropathy). Please meet @bburleson1 @dlcutler @gratefulone @jazzy27 @lindy1956 and @suziep. You can read more about them in this discussion
– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw
@dlcutler mentions that he has also tried glebogamma and may be able to share his experiences with the infusion. I can imagine you’re nervous to start another drug. What measures will the care team take to monitor you after treatment in case you have a reaction again?
Thank you for you reply! No one has talked about any measures for monitoring my infusion. My rheumatologist gave me an epi pen. I am calling the neurologist to talk in more detail about having orders in place in case i have a reaction.
I was just diagnosed with CIDP after 7 years of bizarre symptoms and neuropathy.
I also have broken my same foot 3 times in a year and have had 6-7 surgeries, by just walking.
Can this be related to my CIDP?
Starting IVIG treatment next week, hoping it will help.
It's been almost 3 years since you posted that you were starting IVIG therapy for CIDP. I would really appreciate hearing about any experience you had with IVIG and if it was effective in relieving the symptoms f CIDP.
I hope you are doing well.
Hi Cathy @catharbert, I'm not sure @harley22 is still following Connect but @gratefulone may have some experience to share on the IVIG therapy for CIDP.
Hi @catharbert, I see you’ve reached out to @harley22 this morning. I wanted to make sure they get a notice that you’ve responded to their message by including the full @name . It’s an old post so hopefully this will bring them back into the conversation so you can find out if the IVIG infusions worked. ☺️
Are you considering IVIG treatment?
I saw your note regarding IgG therapy for CIDP and I started IgG therapy for CIDP about 8 months ago. I do have to say I have seen a difference in pain levels, motor response and general wellness. But I also started immunosuppression medication as well, so it is difficult to determine if my response was to IgG or the immunosuppression drugs or the combination of all therapies. I also go to physical therapy twice a week and I have seen great improvement in motor response. I have also attempted to improve my diet and try to avoid carbs and especially sugars. When I manage to eat healthy I feel much better in general, but this can be a challenge. I hope some of this information helps you to manage your CIDP as well. Please keep in touch.
Thank you so much for your message. It is encouraging to hear that something or things you are doing are making you feel better. I don't know if I should expect something to change after just 3 sessions (the first treatment was a "loading dose" everyday for 5 consecutive days, followed by 1 day every other week). Some days I have felt slightly stronger but it is not consistent so I can't see a pattern. I have cut back on sugar and carbohydrates but I need to do better. I have had PT for several months but my insurance would not pay for me to continue. I should be exercising on my own but don't have the energy most of the time. I was walking for 20 minutes every day until the weather got too hot. I'm trying to us a treadmill but i have to be very careful not to overdo it. Sleep is also problematic. My diet is pretty good. I cook and we don't eat red meat – mostly fish and chicken. And not enough vegetables but some every day. I'm 78 and I used to be very active but less so for the past 2 years. I also have severe osteoporosis so I have to be careful not to fall. Thanks again for sharing your experience with me. I hope you continue to improve.
At the infusion facility there should be a policy in place that prior to the infusion medications such as Benadryl, Tylenol and Cortisone may be administered prophylacticly if allergic reactions have been seen with prior infusions. This is usually a stand practice.
After 12 years of chasing the root cause of my symptoms, I was finally diagnosed with CIDP two weeks ago. I'm kind of a mess an AFO on my right leg, sever neuropathy in that leg and complete muscle loss and now have "drop toe" as well. Had lower back fusions and also neck fusions. Both hands becoming increasingly more numb. As an example of my progress, we moved here in 2017, the drive is 5 hours each way. For some reason I decided to move my 3000+ sqf home, almost entirely by myself. Now I would have great difficulty and be in danger, simply walking up the ramp to the truck. I walk, ride a stationary bike, walk around our property which can be a hike up and down, and have been taking mycophenolate and gabapentin for a year. I swear by gabapentin. As an experiment I took myself off of both of them, when I was off the gabapentin I could barley get out of my own way and virtually could not manage without great difficulty. I suffered an electric shock in 2010 that seems to have triggered this slow errosion into a very difficult life. I am SO EXCITED to see there are treatments that are effective in most sufferes! Just waiting to hear from Medicare and the Pharmacist. Also, I lost the ability to drive a couple of years ago because I have no control over my right leg and foot. But for a couple of hundred dollars you can by "sticks" that attach to the peddles and make driving fun~ When my hands go then life will get dark! Right now, at least I have a diagnosis~