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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: 4 days ago | Replies (422)Comment receiving replies
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
Replies to "My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the..."
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22 @katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
Hi @cyp238ress
I have IVig infusions for something else, but I also have neuropathy and that has improved and IVig is
most likely a contributing factor in that. As for side effects... After doing this for a while: drink 120 ounces if water, day before, day of, and day after. I walk around as much as possible, and a very slow infusion rate. I am migraine prone do cranial sacral therapy the day of (@ o'dark thirty). I also take my migraine meds. The IVig as stated is for something else, my body and chemo... so my good side effect is helping with my PN, the bad has been th head aches, which with my new protocol are 2- 4s compared to the yuck before.
I've been having IVig infusions every 4 weeks for over a year. It's hard for me to know what any lessening of pain to attribute to the infusions, or to other things I throw at my idiopathic CIDP. But before I started, my nerve test had shown a disheartening jump in the progression of the disease, and a recent test showed that it has stabilized, which is reason enough for me to continue the infusions. I never had any side effects from the infusions. I was just glad that Medicare approved it because there's no way I could begin to afford the Privigen. It's outrageously expensive. I'm grateful for the various doctors who care for me, who listen to me and believe what I tell them. I've had only a few doctors over the years who treated me poorly, but none currently, thank the Lord.
Jim
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Hello, I have idiopathic small fiber neuropathy and am on IVIG for several months now. It seems to help me reducing burning pain a bit. The side effects that I have experienced so far is fatigue for several days after IVIG. I don't like needles and it takes several hours for the infusion. Also, several doses need to be given until improvement is seen, if the treatments work.