I have CIDP and small fiber Neuropathy and had 3 months of 5 days of Ivig and now get 2 days per month. The infusions helped the small fiber issues the quickest. It seems to take longer to heal the CIDP damage but l feel so much better already it is nice.
Been on IVIG for about 10 years and it does nothing for my neuropathy including small fiber neuropathy. Take it for Low IGG and has eliminated my constant infections though.
Welcome @marquis113, You mentioned being on the IVIG for 10 years but it's for treating your low IgG and infections. Do you mind sharing any treatments you have tried for your neuropathy symptoms?
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.
After being diagnosed with CIDP my doctor suggested I try IVIG. I have the infusions every three weeks. They seemed to be keeping the symptoms from getting worse for about six months. But for the last two months my balance seems to have improved slightly. I’m hopeful that the improvement will continue to slowly improve.
I also have CIDP and neuropathy. I’m on regular IVIG infusions and know it helps my muscle weakness but I don’t know about the neuropathy. I think it would depend on the cause of the neuropathy if that’s been determined. I can barely walk with a walker and would be in a wheelchair without IVIG.
I am headed for my 5th month of ivig treatments. Balance is better, muscles relaxed, small skin nerve repair nerve seems quicker then large CIDP nerves but overall l feel much better. But l was only having minimal limited mobility issues it sounds like compared to you but l was starting to fall way to much, so this is great. Hope it keeps up.
I have chronic demyelinating peripheral neuropathy and am in Stage 4/5. I was up to pain level of 9.5 and my neurologist suggested we try IVIG. That took the pain level down to average of 7. We both acknowledged that it 'might' help with the disease itself, but determining that would be difficult. Three years ago, I had my first (superficial) thrombosis and we decided to pause the IVIG. Six months later, we knew the IVIG had been helpful because the disease advanced more quickly. Back to IVIG once a month for two days. But the REALLY good news was that I received a pair of C Braces. No more being confined to wheelchair. Going to be a long two months in physical therapy to enable me to walk smoothly, but being safely mobile is great. Ottobock tech rep says I can get back to cycling and even play golf.
Ottobock -- https://www.ottobock.com › c-brace › trial. The VA covers the cost and Medicare covers most of the cost.
Welcome @marquis113, You mentioned being on the IVIG for 10 years but it's for treating your low IgG and infections. Do you mind sharing any treatments you have tried for your neuropathy symptoms?
I take gabapentin twice daily which helps some for my pain due to 2 failed back surgeries. I don't know if it helps for my neuropathy. I take aspercreme applied to my ankles for the burning pain and it does help. Unfortunately I have over 40 allergies to medications so I am limited to what I am able to take. Have an appt with a rheumatologist and neurologist tomorrow. Will see if they have any better solutions. Current neurologist is no help.
I take gabapentin twice daily which helps some for my pain due to 2 failed back surgeries. I don't know if it helps for my neuropathy. I take aspercreme applied to my ankles for the burning pain and it does help. Unfortunately I have over 40 allergies to medications so I am limited to what I am able to take. Have an appt with a rheumatologist and neurologist tomorrow. Will see if they have any better solutions. Current neurologist is no help.
I have over 50 drug allergies and can’t take gabapentin or bacoflen by mouth. I am on a special compound crème my orthopedic surgeon prescribed for me.
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm
I have over 50 drug allergies and can’t take gabapentin or bacoflen by mouth. I am on a special compound crème my orthopedic surgeon prescribed for me.
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm
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Does nothing for my neuropathy
I have CIDP and small fiber Neuropathy and had 3 months of 5 days of Ivig and now get 2 days per month. The infusions helped the small fiber issues the quickest. It seems to take longer to heal the CIDP damage but l feel so much better already it is nice.
-
Like -
Helpful -
Hug
2 ReactionsWelcome @marquis113, You mentioned being on the IVIG for 10 years but it's for treating your low IgG and infections. Do you mind sharing any treatments you have tried for your neuropathy symptoms?
After being diagnosed with CIDP my doctor suggested I try IVIG. I have the infusions every three weeks. They seemed to be keeping the symptoms from getting worse for about six months. But for the last two months my balance seems to have improved slightly. I’m hopeful that the improvement will continue to slowly improve.
-
Like -
Helpful -
Hug
2 ReactionsI also have CIDP and neuropathy. I’m on regular IVIG infusions and know it helps my muscle weakness but I don’t know about the neuropathy. I think it would depend on the cause of the neuropathy if that’s been determined. I can barely walk with a walker and would be in a wheelchair without IVIG.
-
Like -
Helpful -
Hug
3 ReactionsI am headed for my 5th month of ivig treatments. Balance is better, muscles relaxed, small skin nerve repair nerve seems quicker then large CIDP nerves but overall l feel much better. But l was only having minimal limited mobility issues it sounds like compared to you but l was starting to fall way to much, so this is great. Hope it keeps up.
-
Like -
Helpful -
Hug
1 ReactionI have chronic demyelinating peripheral neuropathy and am in Stage 4/5. I was up to pain level of 9.5 and my neurologist suggested we try IVIG. That took the pain level down to average of 7. We both acknowledged that it 'might' help with the disease itself, but determining that would be difficult. Three years ago, I had my first (superficial) thrombosis and we decided to pause the IVIG. Six months later, we knew the IVIG had been helpful because the disease advanced more quickly. Back to IVIG once a month for two days. But the REALLY good news was that I received a pair of C Braces. No more being confined to wheelchair. Going to be a long two months in physical therapy to enable me to walk smoothly, but being safely mobile is great. Ottobock tech rep says I can get back to cycling and even play golf.
Ottobock -- https://www.ottobock.com › c-brace › trial. The VA covers the cost and Medicare covers most of the cost.
-
Like -
Helpful -
Hug
3 ReactionsI take gabapentin twice daily which helps some for my pain due to 2 failed back surgeries. I don't know if it helps for my neuropathy. I take aspercreme applied to my ankles for the burning pain and it does help. Unfortunately I have over 40 allergies to medications so I am limited to what I am able to take. Have an appt with a rheumatologist and neurologist tomorrow. Will see if they have any better solutions. Current neurologist is no help.
-
Like -
Helpful -
Hug
1 ReactionI have over 50 drug allergies and can’t take gabapentin or bacoflen by mouth. I am on a special compound crème my orthopedic surgeon prescribed for me.
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm
Hope it helps my son or husband rubs it into my feet.