My understanding is that IVIGg is standard treatment for CIDP: chronic inflammatory demyelinating polyneuropathy. If CIDP, which is quite rate (1 in 100,000 cases) is diagnosed early, it responds quite well to IVIGg. My neurologist says I may not have simple idiopathic peripheral polyneuropathy and I'm in the process of being tested to see if it is CIDP. At least the neurologist is aware that such a thing as CIDP exists and is looking for it and testing for it.
From my prior comment I'd really like to emphasize that I believe that if the root cause of your small fiber neuropathy is autoimmune (for example Sjogren's disease) that IVIG might be beneficial. If it is due to another cause, chemical damage from chemotherapy or other drug injury or non-autoimmune types of diabetes it might not help. With IVIG you're literally flooding your immune system with the antibodies of thousands of donors whose bodies have encountered all types of viruses and infections and likely fought them successfully in order to boost your own immune response. I think it's a reasonable course of action if you have a diagnosed autoimmune disease or possibly even if your SFN is caused by a tick borne disease (they can be notoriously difficult to document). I DID have several positive ANAs and other red flags for autoimmune disease which was why IVIG was recommended. I have also had many ANAs that are negative or inconclusive to a specific disease both before and after so in my case that was probably coincidental to the SFN. I really wish you the best. I have had this 2006 (diagnosed 2008) and it has taken a HUGE toll on my life and completely reshaped my idea of what my "golden years" will be like. But I try to accept as best as I can and physically do as much as I can, which always makes me feel better even though the soreness lasts longer than it used to. I don't give up and if you shouldn't either.
I just wanted to pass along my thoughts on the subject. In my mind I *have* to try everything that might possibly help because if I don't I'll never know if it would have worked and will always wonder. I have had ALL the genetic testing and infectious disease testing out there and nothing is standing out as a cause. So we keep on. I just really wanted you to have an understanding of expectations before you do it.
@laurenthewise1 (I love the name!) I am taken IvIg every 3 weeks for neuropathy caused by SFN caused by Sjogren's and I would have to say it's working because I should be in pain but I'm not. I also take LDN but I don't think it handles that kind of pain. I have no other explanation.
@laurenthewise1 (I love the name!) I am taken IvIg every 3 weeks for neuropathy caused by SFN caused by Sjogren's and I would have to say it's working because I should be in pain but I'm not. I also take LDN but I don't think it handles that kind of pain. I have no other explanation.
@suetex I had thyroid cancer and had my thyroid removed and my right neck dissected. I have had peripheral neuropathy for over 15 years. Finally I am attempting to find out the cause of my neuropathy since idiopathic is not really a diagnosis. I'm wondering if the radioactive iodine that I had to take twice may have caused this or the many treatments I had for breast cancer and the double mastectomy. I had no radiation nor pills for that. Just many many biopsies and lumpectomies until I opted for the mastectomies.
Hope to find a cause soon because now my IBS skirt is making it impossible for any of my swallowed medication to work. Good luck to you and let me know further if you're IV treatment is working. I hope so.
@suetex I had thyroid cancer and had my thyroid removed and my right neck dissected. I have had peripheral neuropathy for over 15 years. Finally I am attempting to find out the cause of my neuropathy since idiopathic is not really a diagnosis. I'm wondering if the radioactive iodine that I had to take twice may have caused this or the many treatments I had for breast cancer and the double mastectomy. I had no radiation nor pills for that. Just many many biopsies and lumpectomies until I opted for the mastectomies.
Hope to find a cause soon because now my IBS skirt is making it impossible for any of my swallowed medication to work. Good luck to you and let me know further if you're IV treatment is working. I hope so.
@cax75 You certainly have been through it! I too have had breast cancer, a lumpectomy and radiation. (No chemo). I am going to try myofasia release (John Barnes method) next to wake up my autonomic nervous system. If it does, I will tell everyone.
@laurenthewise1 (I love the name!) I am taken IvIg every 3 weeks for neuropathy caused by SFN caused by Sjogren's and I would have to say it's working because I should be in pain but I'm not. I also take LDN but I don't think it handles that kind of pain. I have no other explanation.
I am on IVIG Panzyga. I works amazing for the dizziness, balance and motor neuropathy. I have been on it since last December. Once you start it you remain on it
I am on IVIG Panzyga. I works amazing for the dizziness, balance and motor neuropathy. I have been on it since last December. Once you start it you remain on it
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My understanding is that IVIGg is standard treatment for CIDP: chronic inflammatory demyelinating polyneuropathy. If CIDP, which is quite rate (1 in 100,000 cases) is diagnosed early, it responds quite well to IVIGg. My neurologist says I may not have simple idiopathic peripheral polyneuropathy and I'm in the process of being tested to see if it is CIDP. At least the neurologist is aware that such a thing as CIDP exists and is looking for it and testing for it.
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2 Reactions@laurenthewise1 (I love the name!) I am taken IvIg every 3 weeks for neuropathy caused by SFN caused by Sjogren's and I would have to say it's working because I should be in pain but I'm not. I also take LDN but I don't think it handles that kind of pain. I have no other explanation.
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2 ReactionsWhat’s it do for
numbness & stiffness?
@suetex I had thyroid cancer and had my thyroid removed and my right neck dissected. I have had peripheral neuropathy for over 15 years. Finally I am attempting to find out the cause of my neuropathy since idiopathic is not really a diagnosis. I'm wondering if the radioactive iodine that I had to take twice may have caused this or the many treatments I had for breast cancer and the double mastectomy. I had no radiation nor pills for that. Just many many biopsies and lumpectomies until I opted for the mastectomies.
Hope to find a cause soon because now my IBS skirt is making it impossible for any of my swallowed medication to work. Good luck to you and let me know further if you're IV treatment is working. I hope so.
@cax75 You certainly have been through it! I too have had breast cancer, a lumpectomy and radiation. (No chemo). I am going to try myofasia release (John Barnes method) next to wake up my autonomic nervous system. If it does, I will tell everyone.
@suetex
I am so happy to hear that it works for you!
@solobeee1 As I have no numbness, I can't speak to that. As far as stiffness goes, I have plenty of that. So I would say it doesn't do a lot.
I’m starting once a month up from every two ~ how often are your treatments?
I am on IVIG Panzyga. I works amazing for the dizziness, balance and motor neuropathy. I have been on it since last December. Once you start it you remain on it
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2 Reactions@artemis1886
I just researched a bit & found that there are 10 different brands of IVIG. I’ll try & find out if one is better for neuropathy.
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