Hi @fomdelia, I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on IVIG infusions so that you can learn what others have said about this. Simply click VIEW & REPLY in your email notification to get to your post.
I also wanted to tag @azza1@maryy and @arcticmark as they have experience with IVIG infusions.
Thank you for your help but I don't feel that the other community, IV infusions, will address what I am seeking feedback on. The community for infusions discusses Hizentra as a for treatment for neuropathy. Hizentra was approved for that condition not long ago. I have read the posts so far on the infusion community site and there was no discussion about my condition, Common Variable Immunodeficiency, and their experience with treatment for this especially Hizentra. I am really seeking to hear from those individuals who have this immune condition, how they cope with it and what has been their treatment, if not Hizentra. My biggest issue to deal with is the diarrhea and CVI can mimic inflammatory bowel disease, but all doctors I have seen this year alone have confirmed that the diarrhea is from the CVI.
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.
@arcticmark, @albiet, Good morning. I am responding to post by @arcticmark about IVIG and Neuropathy. You can search yourself for more.....in the search field at the top of the page, you can enter (IVIG and Neuropathy). Let me know if you more. The other two on this page had one and two IVIG treatments. Neither reported finding any help with the SFN symptoms. Let us know what you find.
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.
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!!
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!!
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?
@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.
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
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
@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!!
@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.
@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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Thank you for your help but I don't feel that the other community, IV infusions, will address what I am seeking feedback on. The community for infusions discusses Hizentra as a for treatment for neuropathy. Hizentra was approved for that condition not long ago. I have read the posts so far on the infusion community site and there was no discussion about my condition, Common Variable Immunodeficiency, and their experience with treatment for this especially Hizentra. I am really seeking to hear from those individuals who have this immune condition, how they cope with it and what has been their treatment, if not Hizentra. My biggest issue to deal with is the diarrhea and CVI can mimic inflammatory bowel disease, but all doctors I have seen this year alone have confirmed that the diarrhea is from the CVI.
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Helpful -
Hug
1 Reaction@arcticmark, @albiet, Good morning. I am responding to post by @arcticmark about IVIG and Neuropathy. You can search yourself for more.....in the search field at the top of the page, you can enter (IVIG and Neuropathy). Let me know if you more. The other two on this page had one and two IVIG treatments. Neither reported finding any help with the SFN symptoms. Let us know what you find.
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Like -
Helpful -
Hug
2 Reactionshas anyone here actually tried ivig infusions. what were they like? how many did you take? did it help the sfn?
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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Like -
Helpful -
Hug
3 ReactionsIs 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!!
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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Helpful -
Hug
2 Reactions@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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Like -
Helpful -
Hug
2 ReactionsYes, 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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Like -
Helpful -
Hug
3 Reactions@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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Like -
Helpful -
Hug
3 Reactions@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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Like -
Helpful -
Hug
1 Reaction