IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Liked by maryy, rwinney

Thanks for removing it! I always get Benadryl haze on the days of my IVIG, sometimes but not always I get a bit nauseous for a day or two and I get eczema because I'm allergic to the fake plasma. I changed brands of IVIG and it got somewhat better but is still an ever present problem. Compared to what it has relieved, I will gladly put up with this!

Liked by rwinney

REPLY

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.

Liked by Lisa Lucier, rwinney

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@rwinney

My Neuro told me last year when we spoke of IVIG that Medicare will not cover and it's a battle for approval. Nothing ventured, nothing gained.

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Medicare does pay for IVIG. If you go to an outpatient infusion center (they are plentiful, and almost every hospital has one), it’s covered under Part B. Buy a medigap policy to cover the remaining 20%, because paying out of pocket would be vastly more expensive than your premium.

Liked by rwinney

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@sparshall

Medicare does pay for IVIG. If you go to an outpatient infusion center (they are plentiful, and almost every hospital has one), it’s covered under Part B. Buy a medigap policy to cover the remaining 20%, because paying out of pocket would be vastly more expensive than your premium.

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Hello. You obviously speak from experience which holds a ton of value to me. Thank you for the info. I just began Medicare and went with CDPHP Medicare Advantage so I can pay my dues so to speak and be eligible for medi-gap, should I need for IVIG. I also wonder who decided on your frequency?

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@sparshall

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.

Jump to this post

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

REPLY
@sparshall

Medicare does pay for IVIG. If you go to an outpatient infusion center (they are plentiful, and almost every hospital has one), it’s covered under Part B. Buy a medigap policy to cover the remaining 20%, because paying out of pocket would be vastly more expensive than your premium.

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I suppose my Dr said more so that it would be a huge fight with insurance for coverage.

REPLY
@rwinney

Hello. You obviously speak from experience which holds a ton of value to me. Thank you for the info. I just began Medicare and went with CDPHP Medicare Advantage so I can pay my dues so to speak and be eligible for medi-gap, should I need for IVIG. I also wonder who decided on your frequency?

Jump to this post

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.

Liked by rwinney

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@rwinney

I suppose my Dr said more so that it would be a huge fight with insurance for coverage.

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That’s very unfair to you. Is this a neurologist? They deal with IVIG and insurance companies every day, they have knowledgeable staffs to push the approval through. Lying to a patient should never be allowed.

Liked by rwinney

REPLY
@rwinney

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

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Rachel, I developed CIDP symptoms in 2016, but wasn’t accurately diagnosed until late December because doctors kept saying my symptoms were due to multiple pelvic and spinal fractures I suffered in late 2015. (Very few doctors have ever seen a case of CIDP and can’t even define it.) I had to insist on a referral to a neurologist. He has treated a lot of CIDP patients and recognized the symptoms on the first visit. Then I needed the tests to prove what I had. I started IVIG at the beginning of March 2017. Insurance will usually want you to start with the cheapest treatment, which is high dose steroids in this case. I have an ulcer, so that would have killed me. They didn’t argue. After my doctor verified my recurring ulcer and severe acid reflux, they approved IVIG promptly. I believe I would be a quadriplegic by now without it, although I know I will never be “normal” again.

Liked by phoenix0509, rwinney

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What a blessing this treatment is for you. I'm very happy you can receive it. Thank you for explaining more.

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@sparshall

That’s very unfair to you. Is this a neurologist? They deal with IVIG and insurance companies every day, they have knowledgeable staffs to push the approval through. Lying to a patient should never be allowed.

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As I continue to wait for blood results, I have reached out to my new Medicare part B insurance to understand their criteria. I could be wrong but have a feeling IVIG may be where I'm headed so the more I learn, the better I can represent myself. I agree with you. They know exactly what and how to make it happen. This info had not come from my Neurologist but his PA or assistant or whatever they're called.

REPLY
@sparshall

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.

Jump to this post

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.

Liked by katec

REPLY
@sparshall

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.

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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!

Liked by phoenix0509

REPLY
@sparshall

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.

Jump to this post

I started having some symptoms 7 yrs ago, starting in my toes and now it seems to have travelled thru most of my body.
Besides my feet and legs, it’s in my pelvic area, my hand, and my lips are numb.
I hope that IVIG will help me, but my neurologist is hoping to stop it from progressing.
Not much hope for curing it,unfortunately.

REPLY
@sparshall

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.

Jump to this post

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.

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