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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: 19 hours ago | Replies (378)Comment receiving replies
I have CIDP — chronic inflammatory demyelinating polyneuropathy, which is autoimmune — and receive 5 IVIG infusions of 40 grams each in every 4-week cycle. Without it, I would be a quadriplegic by now. (I can walk with a cane but have terrible balance and constant fatigue because I lost 80% of the nerve function in my legs before I was properly diagnosed.) I have my doses spread out over the month so I always have a consistent level in my body. This is not a drug that will help your neuropathy in one dose. It’s meant to be used longterm. Some doctors give up too soon, judging from the experiences of many patients I know. And in many cases its primary effect is to keep you from getting worse. It’s not a cure, although some people can go into remission. It’s the first-line treatment for autoimmune neuropathy, which is not curable.
Replies to "I have CIDP — chronic inflammatory demyelinating polyneuropathy, which is autoimmune — and receive 5 IVIG..."
I had my first round of IVIG infusions Oct, Nov and Dec, over aa period of 4 days in Oct, then 3 days each session in Nov and Dec.
I honestly felt no differently after the third month.
I was glad to read that it takes awhile to see if it’s helping my CIDP or not.
I’m heading for another 3 month session starting next week.
In March my neurologist will reassess me. I hope I start to see positive results.
This has been very trying for me the past 7 yrs,since my symptoms started.
I know what you’re going through as I have lost my balance and my feet are so numb at times,it’s horrible.
My numbness has gone up to my lips, my right hand, and my pelvic area is numb also.
I broke my right foot 3 times since March 2018, and have had 7 surgeries.
Due to my neuropathy I don’t feel pain from the breaks or the surgeries, although I do get that shooting,burning pain,in both of my feet often.
I never know when it’s going to hit me, so I take Ibuprofen round the clock.
I’m on gabapentin 1500 mg daily, but I really don’t think it’s working.
My quality of life stinks, can’t do much of anything.
I’m wearing a clumsy black special made boot so I can walk, boot may come off in March, but I’ll have to wear something else to keep my ankle from breaking again.
Take care hope you feel better!
I’m being treated for same as you.
I’m hoping IVIG will help in stopping it from getting worse, that’s what my neurologist is saying also.
It’s been 7 years for me getting a diagnosis of CIDP, I’ve seen 5 neurologists and had many tests over this period.
I finally had a nerve and muscle biopsy in August, from which I’m not completely healed.
It showed demyelination, and I was given this diagnosis of CIDP, which IVIG was recommended.
Can’t do steeroids because of my bone issue, having broken 3 times in a year.
They think it’s due to the neuropathy,that it’s broken so much.
My wounds take forever to heal, and they think it’s the neuropathy causing it to take forever.
I’m trying to hang in, as I’m sure you are, but it’s difficult at times.
I also have CIDP along with a multiple of autoimmune diseases and a TBI in 3/4/22 and of course immunocompromised. I started IVIG infusions about 4 months ago and have not noticed any relief. My neurologist and rheumatologist want me to continue and start medicinal marijuana. I am in constant pain, numbness in all extremities and no taste or smell from my TBI. If anyone has any suggestions it would be appreciated
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Still waiting for my remission but it's not coming soon enough! I'm waiting on blood results to see if my existing Small Fiber Poly Neuropathy has simply advanced creating loss of walking ability, muscle weakness, exhaustion etc... or if there may be additional contributing factors. I truly appreciate your input and and am glad to hear you are benefiting from IVIG. Do you mind me asking how long you have been receiving the treatment and how the approval process worked for you? Many good wishes sent your way.
Rachel