IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Liked by maryy

About 5 years into this god forsaken condition and after about 25 different medications I was given 2 IVIG's. It will not come as a surprise to any of us that those 2 infusions did nothing and the disease continues its relentless deterioration of my life.

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I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

Liked by maryy

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I took IVIG only once (5 days) and it did not work for me. I think I got even worse. Tingling has increased. No improvement

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@arcticmark

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

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Hi ,
Please , can you ask your friend who took the IVIG infusion, Does she has Small Fiber PN or something else ?
Thank you

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Please , is there anyone have Small Fiber poly neuropathy and take IVIG injectors and feel better ?
Thank you .

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@arcticmark

I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face…) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

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artic have you had more iivig since oct and do do you feel?

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@azza1

Hi ,
Please , can you ask your friend who took the IVIG infusion, Does she has Small Fiber PN or something else ?
Thank you

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She has SFN and that is it.

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@albiet

artic have you had more iivig since oct and do do you feel?

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I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.

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@arcticmark

She has SFN and that is it.

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Hi Arcti ,
Thank you for reply .
Would you please , can you put me in contact with your friend who take the
IVIG and have Small Fiber Polyneuropathy?
You can private message me on this site.
I want to ask her how many injection she took to elementals the symptoms? Is she idiopathic small Fiber Polyneuropathy?
EMG result is normal or not ?
I want to try it but please , I need more information from your friend?
Thank you .

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Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

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@arcticmark

Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

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Thank you Arctic for quick reply . I am waiting to hear from your friend on my email because i need more information from her. The EMG test for me is normal but it was done from 3 years ago .

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@arcticmark

Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

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Hi @arcticmark
How are you ?
Please , did you have a chance to talk to your friend ?
I wish you have a good news . Thank you

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@azza1

Hi @arcticmark
How are you ?
Please , did you have a chance to talk to your friend ?
I wish you have a good news . Thank you

Jump to this post

Hi,

Can you please get me your external email and I will introduce the two of you.

Have a great weekend!

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@arcticmark

Hi,

Can you please get me your external email and I will introduce the two of you.

Have a great weekend!

Jump to this post

Hi ,
What do you mean by external email ?

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Hi @azza1 – I tagged our moderator to have them remove your email address to protect your privacy and prevent spammers from gatthering your email address in a public post. You can share email addresses and other personal information in a private message to another member. Get Started on Connect (link at the bottom of every page in left footer column) has step by step instructions.

How to Send a Private Message
https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

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