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Old 07-15-2013, 03:30 PM #1
Jennifer C. Jennifer C. is offline
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Default IVIG for Axonal Polyneuropathy?

Hello,

I am being denied IVIG by my insurance because they say I don't meet the criteria. I had acute axonal motor neuropathy in December and I'm now in a chronic situation. The damage to the axons in my lower legs continues to get worse and the damage is now affecting my muscles. Does anyone have thoughts/advice about IVIG for my situation? My neurologist says that this is my best hope, but I've been denied 3 times. The insurance company says that IVIG is not a helpful treatment for axonal degeneration. I would appreciate any help anyone can give.
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Old 07-15-2013, 05:05 PM #2
Susanne C. Susanne C. is offline
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Quote:
Originally Posted by Jennifer C. View Post
Hello,

I am being denied IVIG by my insurance because they say I don't meet the criteria. I had acute axonal motor neuropathy in December and I'm now in a chronic situation. The damage to the axons in my lower legs continues to get worse and the damage is now affecting my muscles. Does anyone have thoughts/advice about IVIG for my situation? My neurologist says that this is my best hope, but I've been denied 3 times. The insurance company says that IVIG is not a helpful treatment for axonal degeneration. I would appreciate any help anyone can give.
Not helpful to you, unfortunately, but my understanding is that IVIG is not helpful in axonal neuropathies, only chronic demyelinating ones.
Have hereditary neuropathies been ruled out? I have axonal neuropathy, progressing rather more rapidly than they say a hereditary neuropathy should be, but that is what it is. I am losing strength in my arms as well as my legs.
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Old 07-16-2013, 06:25 AM #3
glenntaj glenntaj is offline
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Default I, for one, am not convinced--

--that IvIg won't help people with axonal degeneration; certainly it has been used 'off-label' for that at certain centers (notably the Jack Miller Center in Chicago and Cornell-Weill in New York) when there is documentable evidence of anti-nerve antibodies (not all of which attack myelin).

Have you had full antibody testing, along the lines of Dr. Latov's/Quest's listing:

http://www.questdiagnostics.com/test...ripheralNeurop

When there is documentable evidence of autoantibody activity some specialists will go to bat against the insurance companies on this (I've seen the Cornell doctors do it). It does take strong advocacy, as the insurance companies are not in the business of saying 'yes', of course.
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Old 07-16-2013, 06:47 AM #4
Susanne C. Susanne C. is offline
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Quote:
Originally Posted by glenntaj View Post
--that IvIg won't help people with axonal degeneration; certainly it has been used 'off-label' for that at certain centers (notably the Jack Miller Center in Chicago and Cornell-Weill in New York) when there is documentable evidence of anti-nerve antibodies (not all of which attack myelin).

Have you had full antibody testing, along the lines of Dr. Latov's/Quest's listing:

http://www.questdiagnostics.com/test...ripheralNeurop

When there is documentable evidence of autoantibody activity some specialists will go to bat against the insurance companies on this (I've seen the Cornell doctors do it). It does take strong advocacy, as the insurance companies are not in the business of saying 'yes', of course.
I often add to my replies "I hope someone who knows more responds!" This is why. Many of us are very knowledgeable about our condition. A few of us are very knowledgeable about the conditions of others. Glenn is one of those few.
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Old 07-16-2013, 01:10 PM #5
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Default re IVIG and insurance

Jennifer

keep pushing your doc to get insurance approval for IVIG

benefits far outweigh the risks

concur with glenn that insurance cos are NOT in the business of saying "yes" esp to expensive therapies like IVIG...they prefer to play the 3D game...deny, delay, and defend why they deny and delay

unfortunately, IVIG is FDA approved for only 5-6 indications, even tho I agree with Glenn that IVIG antibodies could be very helpful in many "other" autoimmune disorders that unfortunately have never been thru the expensive clinical trial approval process demanded by the FDA

I was fortunate (in a sense) to have been dxd with cidp which IS an FDA approved indication for IVIG (but only since 2008)....my neuro got IVIG approved for me quickly... I had been on it for 14 months and it has "worked" for me so far....I have primary demyelination and secondary axon loss per my EMG....my condition has improved....IVIG has "rebooted" my immune system and I am no longer in the "active" phase...my last infusion was 9 weeks ago...I'm knocking on wood as I type this that I do not relapse

wish you all the best of luck if your physician can get IVIG approved for your condition whether FDA approved or not...so don't give up

Last edited by 029anser; 07-16-2013 at 01:23 PM. Reason: additional info
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Old 08-12-2013, 11:24 AM #6
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Default Advise please

I am a 32 y/o physician with post-flu vaccine neuropathy - my sx are burning all over the body -- mainly in arms and legs for last 10 months. My extensive neuro workup has been negative, including skin biopsy for SFN.
I am not sure what to do next. I am on Neurontin 1200 mg per day, Magnesium taurate 400, vit b12/folate and vit d.

I could not tolerate the other pain meds the neurologists tried (lyrica, cymbalta etc.). I really can't be on those kind of meds b/c i have to function at work also. I am very sensitive to most medications.
The neurologist said we could do a 6 month trial of IVIG just to see.. i am not sure if this is the right course.. any thoughts?
I am open to alternative therapies.
thank you
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Old 08-12-2013, 12:17 PM #7
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Default what do you have to lose?

Quote:
Originally Posted by tarheel1580 View Post
I am a 32 y/o physician with post-flu vaccine neuropathy - my sx are burning all over the body -- mainly in arms and legs for last 10 months. My extensive neuro workup has been negative, including skin biopsy for SFN.
I am not sure what to do next. I am on Neurontin 1200 mg per day, Magnesium taurate 400, vit b12/folate and vit d.

I could not tolerate the other pain meds the neurologists tried (lyrica, cymbalta etc.). I really can't be on those kind of meds b/c i have to function at work also. I am very sensitive to most medications.
The neurologist said we could do a 6 month trial of IVIG just to see.. i am not sure if this is the right course.. any thoughts?
I am open to alternative therapies.
thank you
tarheel

if your neuro can get IVIG approved for your neuropathy, do it

IVIG is the most "natural" treatment that exists today...potential benefits far outweigh any risks

symptomatic tx will NOT reboot your immune system...so why not try IVIG for 6 months?

the sooner you start IVIG, the better the prognosis...I would call your neuro right now and tell him to get you started asap....you have nothing to lose by trying it
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Old 11-10-2016, 06:19 AM #8
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Default Did you finally get treatment?

Quote:
Originally Posted by Jennifer C. View Post
Hello,

I am being denied IVIG by my insurance because they say I don't meet the criteria. I had acute axonal motor neuropathy in December and I'm now in a chronic situation. The damage to the axons in my lower legs continues to get worse and the damage is now affecting my muscles. Does anyone have thoughts/advice about IVIG for my situation? My neurologist says that this is my best hope, but I've been denied 3 times. The insurance company says that IVIG is not a helpful treatment for axonal degeneration. I would appreciate any help anyone can give.
Jennifer - I know your post is a couple years old but I'm wondering if you were able to get treatment. I have the same diagnosis and am dealing with 12 months of progression yet no treatment.
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Old 11-19-2018, 06:38 PM #9
P8ntedpny P8ntedpny is offline
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Unhappy IVIG and Neuropathy

Hi. I see this post is not newer, but has anyone gotten the IVIG for their neuropathy? I am already receiving this (since 2002) for any immune system disorder called Common Variable Immuno Deficiency. How have your responses been? I was just diagnosed today with Axonal Poly Neuropathy. Is this also related to ALS? I have a 1st cousin who has ALS...now I am freaking out!
Thanks, Kathy
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Old 11-19-2018, 10:23 PM #10
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Quote:
Originally Posted by P8ntedpny View Post
Hi. I see this post is not newer, but has anyone gotten the IVIG for their neuropathy? I am already receiving this (since 2002) for any immune system disorder called Common Variable Immuno Deficiency. How have your responses been? I was just diagnosed today with Axonal Poly Neuropathy. Is this also related to ALS? I have a 1st cousin who has ALS...now I am freaking out!
Thanks, Kathy
I had one round of IVIG and it didn't help, but maybe I needed to stick with it because neuropathy in legs and feet started about 10 days after getting a flu shot and pneumonia vaccination both on the same day.

That was in 2015. Two or three different Neuros gave me a diagnosis of an idiopathic sensory-motor axonal polyneuropathy. Unfortunately this has caused muscle atrophy in my legs and feet and has progressed quite rapidly. I am now needing to wear leg braces to walk which is a real bummer.

I also was worried about ALS; however, many neurologists have reassured me that ALS is very different from an axonal polyneuropathy. They suspect Charcot Marie Toothe disease to be more likely (i.e. a hereditary neuropathy). I do take high dose b12 which is recommended for ALS sufferers. I do the b12 because at least I'm doing something to maybe slow the progression. I also believe that the incidence of hereditary ALS is very low, so better not to worry about this. Anxiety makes neuropathy pain 10x worse!
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