IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@arcticmark

Hi! I have a rapidly progressing autoimmune mediated peripheral neuropathy and have found IVIG totally eliminates about 20 to 40% of my symptoms. Unfortunately it hasn't stopped the progression of my neuropathy but it has slowed it down somewhat. A member of my PN support group has short fiber idiopathic neuropathy and went from being disabled to being able to work full time with IVIG. A small study at MGH found 74% of people with short fiber neuropathy had positive results from using IVIG. It works if there is an autoimmune or inflammatory component of your disease. I'm not familiar with SFN but if you can get IVIG approved it is worth a chance. I had results with my first infusions although they say with some conditions it takes a while before you know if it works.

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My biggest question for you is, did IVIG get you out of the wheel chair? Can you walk? If and when you are able can you please provide me a brief synopsis of your IVIG journey beyond the percentages. How did IVIG help you in the early stages? What about later stages? How are you feeling currently and what has been your biggest gain overall? I really appreciate all that you can share.
Thank you.
Rachel

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@rwinney

Hi. Do you have any knowledge whether insurance requires plasmapherisis be tried prior to seeking IVIG approval?

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Hi, I know that I didn't have to do it, but you can call your insurer and ask. With BCBS they have a specialty pharmacy customer support so the regular customer support people don't even have access to the right answers. Make sure that you are talking to the people who can give you the real answers. It took me several frustrating calls before I got to the right people.

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@rwinney

My biggest question for you is, did IVIG get you out of the wheel chair? Can you walk? If and when you are able can you please provide me a brief synopsis of your IVIG journey beyond the percentages. How did IVIG help you in the early stages? What about later stages? How are you feeling currently and what has been your biggest gain overall? I really appreciate all that you can share.
Thank you.
Rachel

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I am using a specialty pharmacy to give me my infusions at home. I have a wonderful relax-the-back chair where I spend most of my awake time and they just give me the infusions there. BCBS denied IVIG because I didn't have one of the named diseases even though I had gotten support letters from neurologists at MGH, Brigham, Tufts and the Mayo clinic. As a result I took money out of my retirement for a three month trial. MGH was going to charge $45,000 per month which I could not afford. A friend whose daughter has a neurologic condition told me about specialty pharmacies that do at home infusions. They charged $12-14,000 as I had to change the brand of IVIG due to an eczema reaction to the fake plasma in the cheapest one.

After the first infusion my ability to walk improved immensely. I kept a spread sheet of symptoms (on excel there are probably better programs for the computer savy) I have four pages describing: hands and arms, feet and legs, back and neck, and blood pressure, autonomic symptoms and anything else that was weird (e.g., when I got nauseous from IVIG or other symptoms which suggested that other systems might be being affected.). Doc tors will say that you shouldn't feel much relief from the first few infusions which might be true for some conditions but I have spoken to several people who have also had a positive response very quickly.

The spread sheet showed me that some symptoms like burning in my hands and feet had completely disappeared which was a god- send in itself. Other symptoms go up and down with my infusions which let to me getting IVIG every 3 weeks instead of every four because my symptoms would start returning after three weeks so I was spending most of my IVIG battling the same symptoms. So keep a detailed record of your own symptoms. I kept it daily for awhile but now do it every week or two.

Overtime from my spreadsheet also showed that while IVIG has really helped with my symptoms and I think slowed down my disease, my overall neuropathy keeps progressing and fairly rapidly. Although I had some symptoms, I was biking and hiking in China in November 2017, I was disabled by 2018 and in 2019 I started using an electric wheelchair. That's why I say 20-40% of my symptoms are gone, some go up and down with IVIG and I often have new symptoms appear and then retreat for a while after IVIG. I would be happy to private message with you on Connect if you have more questions that would be better handled with either of them.

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@arcticmark

I am using a specialty pharmacy to give me my infusions at home. I have a wonderful relax-the-back chair where I spend most of my awake time and they just give me the infusions there. BCBS denied IVIG because I didn't have one of the named diseases even though I had gotten support letters from neurologists at MGH, Brigham, Tufts and the Mayo clinic. As a result I took money out of my retirement for a three month trial. MGH was going to charge $45,000 per month which I could not afford. A friend whose daughter has a neurologic condition told me about specialty pharmacies that do at home infusions. They charged $12-14,000 as I had to change the brand of IVIG due to an eczema reaction to the fake plasma in the cheapest one.

After the first infusion my ability to walk improved immensely. I kept a spread sheet of symptoms (on excel there are probably better programs for the computer savy) I have four pages describing: hands and arms, feet and legs, back and neck, and blood pressure, autonomic symptoms and anything else that was weird (e.g., when I got nauseous from IVIG or other symptoms which suggested that other systems might be being affected.). Doc tors will say that you shouldn't feel much relief from the first few infusions which might be true for some conditions but I have spoken to several people who have also had a positive response very quickly.

The spread sheet showed me that some symptoms like burning in my hands and feet had completely disappeared which was a god- send in itself. Other symptoms go up and down with my infusions which let to me getting IVIG every 3 weeks instead of every four because my symptoms would start returning after three weeks so I was spending most of my IVIG battling the same symptoms. So keep a detailed record of your own symptoms. I kept it daily for awhile but now do it every week or two.

Overtime from my spreadsheet also showed that while IVIG has really helped with my symptoms and I think slowed down my disease, my overall neuropathy keeps progressing and fairly rapidly. Although I had some symptoms, I was biking and hiking in China in November 2017, I was disabled by 2018 and in 2019 I started using an electric wheelchair. That's why I say 20-40% of my symptoms are gone, some go up and down with IVIG and I often have new symptoms appear and then retreat for a while after IVIG. I would be happy to private message with you on Connect if you have more questions that would be better handled with either of them.

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I have been told that 50% of the antibodies from an IVIG infusion are processed out of your body by 21 days which is why my symptoms would reappear as the good antibodies were outnumbered by the bad antibodies produced by my body. Rates of production of antibodies vary which is how they have settled on a normal every four week regimen. It will work for the majority of people, but keep track of your own symptoms and see where you are as the IVIG antibodies disappear from your system.

Also, after IVIG worked in the trial BCBS of Maryland denied me again, and then on appeal started to pay my ongoing expenses. I had to hire a lawyer to get my trial money back. I did plus attorney fees. During this time I moved my care to BCBS of Mass and they approved my ongoing treatment in less than a month. I have heard that some patients are having insurance issues and having coverage for there IVIG terminated or being told that there is an IVIG shortage so they don't get any. I have not experienced this, it may be because of the presence of my lawyer or an odd antibody discovered in my . spinal fluid that isn't supposed to be there. Whatever, you are probably in for a fight but with perseverance you should be able to get coverage.

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@rwinney

Hi. Do you have any knowledge whether insurance requires plasmapherisis be tried prior to seeking IVIG approval?

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I didnt have the plasma exchange before gettinh the ivig…

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@arcticmark

I am using a specialty pharmacy to give me my infusions at home. I have a wonderful relax-the-back chair where I spend most of my awake time and they just give me the infusions there. BCBS denied IVIG because I didn't have one of the named diseases even though I had gotten support letters from neurologists at MGH, Brigham, Tufts and the Mayo clinic. As a result I took money out of my retirement for a three month trial. MGH was going to charge $45,000 per month which I could not afford. A friend whose daughter has a neurologic condition told me about specialty pharmacies that do at home infusions. They charged $12-14,000 as I had to change the brand of IVIG due to an eczema reaction to the fake plasma in the cheapest one.

After the first infusion my ability to walk improved immensely. I kept a spread sheet of symptoms (on excel there are probably better programs for the computer savy) I have four pages describing: hands and arms, feet and legs, back and neck, and blood pressure, autonomic symptoms and anything else that was weird (e.g., when I got nauseous from IVIG or other symptoms which suggested that other systems might be being affected.). Doc tors will say that you shouldn't feel much relief from the first few infusions which might be true for some conditions but I have spoken to several people who have also had a positive response very quickly.

The spread sheet showed me that some symptoms like burning in my hands and feet had completely disappeared which was a god- send in itself. Other symptoms go up and down with my infusions which let to me getting IVIG every 3 weeks instead of every four because my symptoms would start returning after three weeks so I was spending most of my IVIG battling the same symptoms. So keep a detailed record of your own symptoms. I kept it daily for awhile but now do it every week or two.

Overtime from my spreadsheet also showed that while IVIG has really helped with my symptoms and I think slowed down my disease, my overall neuropathy keeps progressing and fairly rapidly. Although I had some symptoms, I was biking and hiking in China in November 2017, I was disabled by 2018 and in 2019 I started using an electric wheelchair. That's why I say 20-40% of my symptoms are gone, some go up and down with IVIG and I often have new symptoms appear and then retreat for a while after IVIG. I would be happy to private message with you on Connect if you have more questions that would be better handled with either of them.

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Hello Mark.

I sincerely thank you for investing your time to explain more. All of your posts have provided helpful information.

Presently, I have concerns that I may be heading in this direction for treatment but, I'm not sure until tests results are back. In any event, I like to gain knowledge and awareness. I've noted your email and the attorney info from your prior post and will reach out if needed. It's very gracious that you have shared.

Personal experience is more beneficial than any text book could ever hope to be! May you have a tolerable day and continued success from IVIG. Thanks again.

Rachel

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@ginthert

I didnt have the plasma exchange before gettinh the ivig…

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Ok, thank you.

REPLY
@arcticmark

I have been told that 50% of the antibodies from an IVIG infusion are processed out of your body by 21 days which is why my symptoms would reappear as the good antibodies were outnumbered by the bad antibodies produced by my body. Rates of production of antibodies vary which is how they have settled on a normal every four week regimen. It will work for the majority of people, but keep track of your own symptoms and see where you are as the IVIG antibodies disappear from your system.

Also, after IVIG worked in the trial BCBS of Maryland denied me again, and then on appeal started to pay my ongoing expenses. I had to hire a lawyer to get my trial money back. I did plus attorney fees. During this time I moved my care to BCBS of Mass and they approved my ongoing treatment in less than a month. I have heard that some patients are having insurance issues and having coverage for there IVIG terminated or being told that there is an IVIG shortage so they don't get any. I have not experienced this, it may be because of the presence of my lawyer or an odd antibody discovered in my . spinal fluid that isn't supposed to be there. Whatever, you are probably in for a fight but with perseverance you should be able to get coverage.

Jump to this post

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.

REPLY
@arcticmark

I am using a specialty pharmacy to give me my infusions at home. I have a wonderful relax-the-back chair where I spend most of my awake time and they just give me the infusions there. BCBS denied IVIG because I didn't have one of the named diseases even though I had gotten support letters from neurologists at MGH, Brigham, Tufts and the Mayo clinic. As a result I took money out of my retirement for a three month trial. MGH was going to charge $45,000 per month which I could not afford. A friend whose daughter has a neurologic condition told me about specialty pharmacies that do at home infusions. They charged $12-14,000 as I had to change the brand of IVIG due to an eczema reaction to the fake plasma in the cheapest one.

After the first infusion my ability to walk improved immensely. I kept a spread sheet of symptoms (on excel there are probably better programs for the computer savy) I have four pages describing: hands and arms, feet and legs, back and neck, and blood pressure, autonomic symptoms and anything else that was weird (e.g., when I got nauseous from IVIG or other symptoms which suggested that other systems might be being affected.). Doc tors will say that you shouldn't feel much relief from the first few infusions which might be true for some conditions but I have spoken to several people who have also had a positive response very quickly.

The spread sheet showed me that some symptoms like burning in my hands and feet had completely disappeared which was a god- send in itself. Other symptoms go up and down with my infusions which let to me getting IVIG every 3 weeks instead of every four because my symptoms would start returning after three weeks so I was spending most of my IVIG battling the same symptoms. So keep a detailed record of your own symptoms. I kept it daily for awhile but now do it every week or two.

Overtime from my spreadsheet also showed that while IVIG has really helped with my symptoms and I think slowed down my disease, my overall neuropathy keeps progressing and fairly rapidly. Although I had some symptoms, I was biking and hiking in China in November 2017, I was disabled by 2018 and in 2019 I started using an electric wheelchair. That's why I say 20-40% of my symptoms are gone, some go up and down with IVIG and I often have new symptoms appear and then retreat for a while after IVIG. I would be happy to private message with you on Connect if you have more questions that would be better handled with either of them.

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@arcticmark – thanks for sharing your IVIG experiences, which are valuable to all who are looking into that treatment.

I wanted to let you know I removed your personal email for the sake of your privacy and to protect you from undesired spam. I suggest using the Connect private message function (see email icon at the top of any Connect page) for any private correspondence with members.

You talked about some relief soon after starting the IVIG. Have you noticed any undesirable side effects at all?

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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!

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