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.
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.
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.
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?
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.
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
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.
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?
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.
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.
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
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.
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.
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.
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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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2 ReactionsMedicare 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.
-
Like -
Helpful -
Hug
1 ReactionHello. 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?
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
I suppose my Dr said more so that it would be a huge fight with insurance for coverage.
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.
-
Like -
Helpful -
Hug
1 ReactionThat’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.
-
Like -
Helpful -
Hug
1 ReactionRachel, 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.
-
Like -
Helpful -
Hug
2 ReactionsWhat a blessing this treatment is for you. I'm very happy you can receive it. Thank you for explaining more.
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.