Hi Harley 22,
What is your diagnostic and what other meds or treatment have you taken that did help you? .y diagnosis is idiopathic neuropathy and IVIG is not doing it. Prednisone and a lot 2 hours daily exercise is returning me to walk
How much prednisone? My idiopathic SFN is also prednisone-responsive but my docs & I have kept daily dose at 10 mg/day with infrequent, brief burst (50 mg/day tapering by 5-10 mg/day for stress-induced (mechanical, emotional, exertional) severe flares of neuropathic pain).
IVIG helped drain my $$$ but did nothing to my daily pain.
How much prednisone? My idiopathic SFN is also prednisone-responsive but my docs & I have kept daily dose at 10 mg/day with infrequent, brief burst (50 mg/day tapering by 5-10 mg/day for stress-induced (mechanical, emotional, exertional) severe flares of neuropathic pain).
IVIG helped drain my $$$ but did nothing to my daily pain.
Hello @docme, Welcome to Connect. I'm glad to hear the prednisone is provide relief for your SFN symptoms. It's interesting that your idiopathic SFN is being treated with prednisone. I wasn't aware of prednisone being a treatment. I also have idiopathic small fiber peripheral neuropathy but only have some numbness and haven't found any medications that help with the numbness. I have taken prednisone for 2 separate occurrences of polymyalgia rheumatica (PMR) and started both at 20 mg. I'm glad to be off of it now but it definitely helped with the PMR pain. I was always concerned with long term use of prednisone even though it can be a necessity for some conditions. I did find some information on the topic that may be helpful to others looking for something other than the normal medications prescribed for neuropathic pain.
"Will prednisone help with neuropathy?
Chronic inflammatory demyelinating polyneuropathy responds to immunosuppressive treatments, such as prednisone, intravenous immunoglobulin, and Plex. Treatment with daily prednisone is inexpensive and effective but is associated with long-term adverse effects."
--- Treatment of Chronic Inflammatory Demyelinating Polyneuropathy With Pulsed Oral Steroids: https://jamanetwork.com/journals/jamaneurology/fullarticle/1107517.
How long have you been on the prednisone treatment?
I know several people with PN that have successful results without negative side effects. They shared that the doctor's told them about a 50/50 chance it would help. Not a cure, but remission is possible. I read this yesterday in a group I have been in for years. Good luck.
Hello @docme, Welcome to Connect. I'm glad to hear the prednisone is provide relief for your SFN symptoms. It's interesting that your idiopathic SFN is being treated with prednisone. I wasn't aware of prednisone being a treatment. I also have idiopathic small fiber peripheral neuropathy but only have some numbness and haven't found any medications that help with the numbness. I have taken prednisone for 2 separate occurrences of polymyalgia rheumatica (PMR) and started both at 20 mg. I'm glad to be off of it now but it definitely helped with the PMR pain. I was always concerned with long term use of prednisone even though it can be a necessity for some conditions. I did find some information on the topic that may be helpful to others looking for something other than the normal medications prescribed for neuropathic pain.
"Will prednisone help with neuropathy?
Chronic inflammatory demyelinating polyneuropathy responds to immunosuppressive treatments, such as prednisone, intravenous immunoglobulin, and Plex. Treatment with daily prednisone is inexpensive and effective but is associated with long-term adverse effects."
--- Treatment of Chronic Inflammatory Demyelinating Polyneuropathy With Pulsed Oral Steroids: https://jamanetwork.com/journals/jamaneurology/fullarticle/1107517.
How long have you been on the prednisone treatment?
Prednisone 10 mg/day for about 12 years following serendipitous discovery: Out of concern that new, severe tinnitus might be a harbinger of immune-mediated acoustic neuropathy with a risk of hearing loss, I took high-dose prednisone for about a week. I don't recall any immediate response of tinnitus, but to my surprise, prednisone promptly abolished my peripheral neuropathic pain. Subsequently, the pain recurred whenever, on multiple occasions, I tapered prednisone below 10 mg/day. As time has gone by, I have continued prednisone 10 mg/day plus, with increasing severity and distribution of pain, I have tried multiple pharmacological interventions (plus a spinal cord stimulator) to control pain and/or neuropathic processes. Only recently have I (with physician concurrence) hit upon trying higher-dose prednisone burst as described earlier.
My continued use of prednisone found academic support in the following report by Dabby:
Acute steroid responsive small-fiber sensory neuropathy: a new entity?
Ron Dabby, Ronit Gilad, Menachem Sadeh, Yair Lampl, Nathan Watemberg. First published: 07 March 2006 https://doi.org/10.1111/j.1085-9489.2006.00062.xCitations: 46.
"Abstract: Small-fiber neuropathy is often idiopathic and commonly follows a chronic course. Treatment is often effective in treating the core symptom of pain, but it has no effect on the pathologic process. We describe four patients with acute small-fiber neuropathy who responded dramatically to steroid therapy. All patients had acute onset neuropathic pain, normal nerve conduction studies, and evidence of small-fiber dysfunction in quantitative sensory testing and skin biopsy. Symptoms were distal and symmetrical in three patients and generalized in one patient. In two cases, the neuropathy presented as an erythromelalgia-like syndrome. Marked clinical improvement occurred 1–2 weeks after oral prednisone therapy was initiated. Three patients remained symptom free, and one patient experienced recurrence of neuropathy after prednisone was tapered."
I tried much later daily doses of prednisone years ago for my pains which they have now identified as neuropathy with little success and stopped it because they felt the damage of long term use way out weighed the gains. Daily use of Meloxicam worked wonders for me and didn’t effect my kidneys or stomach after over 3 years of use but the last 5 months of IvIG infusion treatments for CIDP and small cell neuropathy have helped me a lot. It is weird though the treatments which l get now every30 day are getting better every month but by the time l go back l clearly need it.
It is so reassuring to hear that IvIg infusion treatments are working for you. I started my infusions but will not get up to "immunomodulating dose" for 4 more months. It is also interesting to hear about the prednisone pulse treatments. I am already taking medications (anti-convulsants for epilepsy) that gave me osteoporosis, so I have steered clear of any further steroids. But I will ask my endocrinologist about the pulse prednisone effect on bone marrow density. I need to find some relief from my neuropathy pain because there are times (i.e., dropping barometric pressure) when it is nothing short of excruciating (comparable to a ruptured bowel), and doctors just don't want to prescribe opioids (the only thing that marginally helps). I think I've tried everything else out there for pain control with no success.
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How much prednisone? My idiopathic SFN is also prednisone-responsive but my docs & I have kept daily dose at 10 mg/day with infrequent, brief burst (50 mg/day tapering by 5-10 mg/day for stress-induced (mechanical, emotional, exertional) severe flares of neuropathic pain).
IVIG helped drain my $$$ but did nothing to my daily pain.
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1 ReactionHello @docme, Welcome to Connect. I'm glad to hear the prednisone is provide relief for your SFN symptoms. It's interesting that your idiopathic SFN is being treated with prednisone. I wasn't aware of prednisone being a treatment. I also have idiopathic small fiber peripheral neuropathy but only have some numbness and haven't found any medications that help with the numbness. I have taken prednisone for 2 separate occurrences of polymyalgia rheumatica (PMR) and started both at 20 mg. I'm glad to be off of it now but it definitely helped with the PMR pain. I was always concerned with long term use of prednisone even though it can be a necessity for some conditions. I did find some information on the topic that may be helpful to others looking for something other than the normal medications prescribed for neuropathic pain.
"Will prednisone help with neuropathy?
Chronic inflammatory demyelinating polyneuropathy responds to immunosuppressive treatments, such as prednisone, intravenous immunoglobulin, and Plex. Treatment with daily prednisone is inexpensive and effective but is associated with long-term adverse effects."
--- Treatment of Chronic Inflammatory Demyelinating Polyneuropathy With Pulsed Oral Steroids: https://jamanetwork.com/journals/jamaneurology/fullarticle/1107517.
How long have you been on the prednisone treatment?
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2 ReactionsWhat supliment will help with nerve regeneration?
Hello @021343dl, Welcome to Connect. There are quite a few discussions on supplements for neuropathy that you might find helpful. Here is a list of the discussions found using the Connect search function: https://connect.mayoclinic.org/search/discussions/?search=supplements+for+neuropathy.
The Foundation for Peripheral Neuropathy also has a list of supplements for neuropathy on their complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.
Have you been diagnosed with neuropathy?
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1 ReactionI know several people with PN that have successful results without negative side effects. They shared that the doctor's told them about a 50/50 chance it would help. Not a cure, but remission is possible. I read this yesterday in a group I have been in for years. Good luck.
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1 ReactionExcellent share. You are appreciated. The website has a wealth of great information. I go there often for updates.
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2 ReactionsPrednisone 10 mg/day for about 12 years following serendipitous discovery: Out of concern that new, severe tinnitus might be a harbinger of immune-mediated acoustic neuropathy with a risk of hearing loss, I took high-dose prednisone for about a week. I don't recall any immediate response of tinnitus, but to my surprise, prednisone promptly abolished my peripheral neuropathic pain. Subsequently, the pain recurred whenever, on multiple occasions, I tapered prednisone below 10 mg/day. As time has gone by, I have continued prednisone 10 mg/day plus, with increasing severity and distribution of pain, I have tried multiple pharmacological interventions (plus a spinal cord stimulator) to control pain and/or neuropathic processes. Only recently have I (with physician concurrence) hit upon trying higher-dose prednisone burst as described earlier.
My continued use of prednisone found academic support in the following report by Dabby:
Acute steroid responsive small-fiber sensory neuropathy: a new entity?
Ron Dabby, Ronit Gilad, Menachem Sadeh, Yair Lampl, Nathan Watemberg. First published: 07 March 2006 https://doi.org/10.1111/j.1085-9489.2006.00062.xCitations: 46.
"Abstract: Small-fiber neuropathy is often idiopathic and commonly follows a chronic course. Treatment is often effective in treating the core symptom of pain, but it has no effect on the pathologic process. We describe four patients with acute small-fiber neuropathy who responded dramatically to steroid therapy. All patients had acute onset neuropathic pain, normal nerve conduction studies, and evidence of small-fiber dysfunction in quantitative sensory testing and skin biopsy. Symptoms were distal and symmetrical in three patients and generalized in one patient. In two cases, the neuropathy presented as an erythromelalgia-like syndrome. Marked clinical improvement occurred 1–2 weeks after oral prednisone therapy was initiated. Three patients remained symptom free, and one patient experienced recurrence of neuropathy after prednisone was tapered."
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Hug
2 ReactionsI tried much later daily doses of prednisone years ago for my pains which they have now identified as neuropathy with little success and stopped it because they felt the damage of long term use way out weighed the gains. Daily use of Meloxicam worked wonders for me and didn’t effect my kidneys or stomach after over 3 years of use but the last 5 months of IvIG infusion treatments for CIDP and small cell neuropathy have helped me a lot. It is weird though the treatments which l get now every30 day are getting better every month but by the time l go back l clearly need it.
-
Like -
Helpful -
Hug
1 ReactionIt is so reassuring to hear that IvIg infusion treatments are working for you. I started my infusions but will not get up to "immunomodulating dose" for 4 more months. It is also interesting to hear about the prednisone pulse treatments. I am already taking medications (anti-convulsants for epilepsy) that gave me osteoporosis, so I have steered clear of any further steroids. But I will ask my endocrinologist about the pulse prednisone effect on bone marrow density. I need to find some relief from my neuropathy pain because there are times (i.e., dropping barometric pressure) when it is nothing short of excruciating (comparable to a ruptured bowel), and doctors just don't want to prescribe opioids (the only thing that marginally helps). I think I've tried everything else out there for pain control with no success.