Has anyone had IVIG Infusions for Neuropathy?

My neurologist set my schedule. I started with five days in a row once a month, but I hit the famous “trough” at the end of every cycle, and my doctor put me on weekly doses to keep the level of antibodies stable. I have no side effects other than feeling tired after each infusion. I have improved somewhat and don’t have the crippling nerve pain I started with. I had so much nerve damage before I was properly diagnosed that I’m grateful I can walk with a cane in the house and can use my arms and hands fully. At my age, I am very unlikely to see much healing of the damaged myelin, but that can happen in younger patients with the help of regular IVIG.

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.

My neurologist set my schedule. I started with five days in a row once a month, but I hit the famous “trough” at the end of every cycle, and my doctor put me on weekly doses to keep the level of antibodies stable. I have no side effects other than feeling tired after each infusion. I have improved somewhat and don’t have the crippling nerve pain I started with. I had so much nerve damage before I was properly diagnosed that I’m grateful I can walk with a cane in the house and can use my arms and hands fully. At my age, I am very unlikely to see much healing of the damaged myelin, but that can happen in younger patients with the help of regular IVIG.

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.

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 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!

Wow, amazing how wonderful IVIG can be for some. The loss of my legs scares me the most. I do have balance thankfully but the weakness, pain and aching throughout my body is debiliating. Time will tell. Trying to be patient but at 49, I'd like to get moving, you know.

What works for me is getting IVIG regularly. My neurologist, who has a splendid reputation and specializes in CIDP, says off and on treatment is worthless. It wears off quickly and you’re right back where you started. Don’t hesitate to insist on regular infusions that will keep the level in your body steady long enough for it to do you some good. It’s not a short term medication like an antibiotic. It’s meant to be taken long term and regularly. .

CIDP is a terrible disease. It affects different people in different ways, but it all comes down to a dreadful situation that can make just getting through the day a struggle. I hope IVIG can stop the progression of your damage. Hang in there, and know that you are not alone. The GBS/CIDP Foundation has a good site filled with medical information, and it has an online forum. The Foundation recommends the best treatment centers (“Centers of Excellence”), sponsors local chapters and events and a big annual conference with expert speakers. It’s a resource you might want to check out because it’s devoted entirely to CIDP and GBS (which some neurologists consider a short-term form of CIDP). I found their downloadable guide to physical therapy for CIDP patients (written by neurologists) very useful. Most physical therapists are unfamiliar with CIDP and can have you doing things that might harm your weak muscles. We have to learn enough about our conditions to protect ourselves from people who don’t understand the demands the disease makes on our bodies.