IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Liked by maryy, rwinney

Is there anyone who has had IVIG treatments for their idiopathic SFN? You have no indication of it being autoimmune or even genetic but still found some relief or success after IVIG treatments. Thanks!!

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@katec

Is there anyone who has had IVIG treatments for their idiopathic SFN? You have no indication of it being autoimmune or even genetic but still found some relief or success after IVIG treatments. Thanks!!

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Hi, @katec – I moved your post on IVIG success for idiopathic small fiber neuropathy here to this existing thread on IVIG infusions and neuropathy so you can connect with others discussing this treatment.

Hoping that members such as @arcticmark @albiet @artscaping @fomdelia @azza1 and others can comment on whether they have had these infusions and whether they have had successful outcomes with it.

Are you considering IVIG infusions, or has your doctor recommended this as an option, katec?

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@katec unfortunately, i have not tried IVIG. i am lost and really dont know whom to go to next as im not sure what is SFN and what is not. im sorry i am of no help on this.

Liked by Lisa Lucier

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Yes, and I know several people who have tried it. It is the only thing that can reverse symptoms so why not? It helped one woman I know go from disabled to full-time employed. For some people it does nothing and for me it has reduced my symptoms 2-40%. Some of my symptoms just stopped with IVIG others go up and down with the infusions. Another issue is that I'm allergic to the plasma so I have developed eczema on a constant timeframe. That's been my only side-effect, I don't know if there are others, mine stops as soon as my infusions stop no long lasting problems. There is a good study out of MGH which is now being replicated with a doublSFN.e-blind study which found that IVIG was helpful with people who had SFN. All of my nerves are being impacted so my experience shouldn't be confused with

Liked by Lisa Lucier, rwinney

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@arcticmark

Yes, and I know several people who have tried it. It is the only thing that can reverse symptoms so why not? It helped one woman I know go from disabled to full-time employed. For some people it does nothing and for me it has reduced my symptoms 2-40%. Some of my symptoms just stopped with IVIG others go up and down with the infusions. Another issue is that I'm allergic to the plasma so I have developed eczema on a constant timeframe. That's been my only side-effect, I don't know if there are others, mine stops as soon as my infusions stop no long lasting problems. There is a good study out of MGH which is now being replicated with a doublSFN.e-blind study which found that IVIG was helpful with people who had SFN. All of my nerves are being impacted so my experience shouldn't be confused with

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@arcticmark Thanks so much for your reply! I’m glad you have found some success with IVIG. I know that IVIG is generally only for those with an identifiable autoimmune disease, so since my son doesn’t have any indication of autoimmune I’ve been told IVIG is a longshot. But I want him to try it since it’s really the only treatment that has shown to reverse SFN in some cases. His doctor is prescribing a 3 month trial so now we are just waiting for insurance. I’m expecting an uphill battle with insurance, but our doctor is terrific and knows she will have to persuade them to let us try this treatment. I’m hoping that my son’s age (15 yrs old) will help with our case. Honestly, he’d be over the moon if he could get ANY kind of relief and live a more normal teenage life! Thanks again for responding!!

Liked by Lisa Lucier, rwinney

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@albiet

@katec unfortunately, i have not tried IVIG. i am lost and really dont know whom to go to next as im not sure what is SFN and what is not. im sorry i am of no help on this.

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@albiet Thanks so much for responding! I feel your despair about this condition and hope that you can find some answers soon. I have found it takes a while and lots of trial and error to find the right doctors to help you. We found that we had to travel out of state to find the right doctor who was willing to go the extra mile for my son and deal with myself and my 1,000 questions!

Liked by rwinney

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@katec

@albiet Thanks so much for responding! I feel your despair about this condition and hope that you can find some answers soon. I have found it takes a while and lots of trial and error to find the right doctors to help you. We found that we had to travel out of state to find the right doctor who was willing to go the extra mile for my son and deal with myself and my 1,000 questions!

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@katec thank you for your thoughts. I pray that the IVIG is approved and works for your son. You mention that you went out of town. Was that with dr oaklander ? How does one get to see her ?

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@katec

@arcticmark Thanks so much for your reply! I’m glad you have found some success with IVIG. I know that IVIG is generally only for those with an identifiable autoimmune disease, so since my son doesn’t have any indication of autoimmune I’ve been told IVIG is a longshot. But I want him to try it since it’s really the only treatment that has shown to reverse SFN in some cases. His doctor is prescribing a 3 month trial so now we are just waiting for insurance. I’m expecting an uphill battle with insurance, but our doctor is terrific and knows she will have to persuade them to let us try this treatment. I’m hoping that my son’s age (15 yrs old) will help with our case. Honestly, he’d be over the moon if he could get ANY kind of relief and live a more normal teenage life! Thanks again for responding!!

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I was happy to see that positive post about IVIG for you and your son. Fingers still crossed for insurance approval. 🤞

Liked by Lisa Lucier, katec

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@albiet

@katec thank you for your thoughts. I pray that the IVIG is approved and works for your son. You mention that you went out of town. Was that with dr oaklander ? How does one get to see her ?

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@albiet Yes, we see Dr Oaklander in Boston even though we live in Austin, Texas. She isn’t taking new patients, but she agreed to see my son based on his age and extremely low results of his skin biopsy which was done through her lab. She is completely overworked yet feels a tremendous amount of guilt that she can’t take on new patients. She was emailing me on Christmas Eve because she’s so behind

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@katec that was so nice of her. What was seeing her like. What tests did she order and how many times did u see her. It may give me guidance. Thank you.

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@katec on a side note, what’s the best bbq in Austin. I’ll be there on business later in the month and have 1 night I can break away for bbq

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@albiet

@katec that was so nice of her. What was seeing her like. What tests did she order and how many times did u see her. It may give me guidance. Thank you.

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@albiet We had done all the testing (except the abdominal biopsy) she recommends on her website, neuropathycommons.org, before we had seen her. The doctor we were seeing before her was very thorough and had researched what tests Dr O recommends and made sure we had all that done prior to our office visit. Dr O was very personable and gave my son and me a tour of her lab so we could see some of the research she was working on. My son really liked that and had an instant connection to her especially since she’s a Patriots fan, and my son had worn his Tom Brady jersey to the appt! I know how lucky we are that she agreed to see my son and I’m thankful for that everyday. It’s been rare, in our situation, to find a doctor that cares this much and is so incredibly nice. We came across a lot of jerks while searching for a diagnosis!

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@albiet

@katec on a side note, what’s the best bbq in Austin. I’ll be there on business later in the month and have 1 night I can break away for bbq

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If you only have one night your best bet is Stiles Switch! It is authentic, delicious Texas bbq and the line is not crazy and they usually don’t run out of the favorites! When we have out of towners we take them to Stiles Switch. There are other places as well like Franklins and LA BBQ but you have to get in line at 8:00am and hope to eat by 1:00 and they usually run out of brisket and ribs by then

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@katec thanks for the info. It was so nice to hear how she took an interest in your son. Since you had already taken all the tests, was she able able to do any other additional tests or further info by meeting your son in person.

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@rwinney

I was happy to see that positive post about IVIG for you and your son. Fingers still crossed for insurance approval. 🤞

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@rwinney Yes, she submitted the prescription for IVIG a couple days ago so I’m sure it will go back and forth quite a few times with insurance, but I’m not giving up, we will get it approved!! It’s a longshot but we have to try something more aggressive like this since he’s only 15 years old. 🤞🏼🤞🏼

Liked by rwinney

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