[Mrs.Redman]

Has anyone used IVIG for their SFN? I have done some small research on IVIG and have found that insurance companies don't like to pay for this. I also read that you have to have some type of chronic infection at least 4 times or more a year to be eligible to have IVIG for insurance companies to pay for this. Can someone please give us your experience on this topic. I am going to see my specialist next week and would love to be able to talk knowledgeably with her about it.

Also, if you have been dx'ed with fibro and SFN ONLY, would you please comment.

Thank you.

[en bloc]

You are correct...insurance does NOT like to pay for this. But if you have a documented case for SFN (positive skin biopsy and trial and failure of other treatments) there should be no problem.

They typically will NOT cover IVIG just if you have 4 infection in a year. You must show confirmed/document PID (primary immune deficiency) on lab work...and repeated infections.

IVIG is always in short supply (it's a specialized blood product that requires up to 2000 donors to make ONE dose), so there is strict criteria to get it. Not to mention that the cost is very high. My dose just for PID (which is much lower then dosing for SFN) is about $8,000-$10,000 for one dose each month. Now that I'm starting to get higher doses for neuropathy, that cost will triple each month.

But if you can get it, you might find it's very helpful...as many others have.

[Mrs.Redman]

Originally Posted by en bloc

You are correct...insurance does NOT like to pay for this. But if you have a documented case for SFN (positive skin biopsy and trial and failure of other treatments) there should be no problem.

They typically will NOT cover IVIG just if you have 4 infection in a year. You must show confirmed/document PID (primary immune deficiency) on lab work...and repeated infections.

IVIG is always in short supply (it's a specialized blood product that requires up to 2000 donors to make ONE dose), so there is strict criteria to get it. Not to mention that the cost is very high. My dose just for PID (which is much lower then dosing for SFN) is about $8,000-$10,000 for one dose each month. Now that I'm starting to get higher doses for neuropathy, that cost will triple each month.

But if you can get it, you might find it's very helpful...as many others have.

Thank you so much for your insight into IVIG and the cost. I am not certain what PID is or how to get it checked. Are there specific infections? I can get 3-4 sinus infections a year. Would that count? I am documented with SFN but not sure about "other treatment failures" Most of us with painful neuropathies take meds that only help us cope and not take the pain away completely. I suppose that could count as failure.

I'm asking all of these questions because so many drs don't know how to treat neuropathies and you have given us some valuable information. Unless you have a great specialist, your local neuro, I believe, doesn't know much about good treatments or the newest "thing" out there. Not that they are not interested. I think they just don't have the time, which is unfortunate for us.

I'll be doing some research on PID. I do hope your treatment works for you and that it makes you feel wonderfully better.

[en bloc]

Originally Posted by Mrs.Redman

Thank you so much for your insight into IVIG and the cost. I am not certain what PID is or how to get it checked. Are there specific infections? I can get 3-4 sinus infections a year. Would that count? I am documented with SFN but not sure about "other treatment failures" Most of us with painful neuropathies take meds that only help us cope and not take the pain away completely. I suppose that could count as failure.

I'm asking all of these questions because so many drs don't know how to treat neuropathies and you have given us some valuable information. Unless you have a great specialist, your local neuro, I believe, doesn't know much about good treatments or the newest "thing" out there. Not that they are not interested. I think they just don't have the time, which is unfortunate for us.

I'll be doing some research on PID. I do hope your treatment works for you and that it makes you feel wonderfully better.

PID is Primary Immune Deficiency. It is checked simply by basic lab work for immune system function. Sinus infections are common in those with total ot subclass immune deficiencies.

There are several parts of the immune system with IgG being the biggest part. This part is broken down into 4 sub-classes (1, 2 , 3 & 4). You can have enough total IgG, yet not enough of one or more subclasses. This could cause you to have repeated infections...and yes, qualify for IVIG. Your doctor needs to check all parts of the immune system (IgG, IgM, IgA, IgE)...then look at the sub-classes of the IgG. Then they would have a better idea if you are immune deficient and might qualify for IVIG based upon that.

If you have SFN and a skin biopsy confirms it, you should qualify based upon this aspect only...and NOT need the immune deficiency diagnosis for approval.

[hopeful]

Originally Posted by Mrs.Redman

Thank you so much for your insight into IVIG and the cost. I am not certain what PID is or how to get it checked. Are there specific infections? I can get 3-4 sinus infections a year. Would that count? I am documented with SFN but not sure about "other treatment failures" Most of us with painful neuropathies take meds that only help us cope and not take the pain away completely. I suppose that could count as failure.

I'm asking all of these questions because so many drs don't know how to treat neuropathies and you have given us some valuable information. Unless you have a great specialist, your local neuro, I believe, doesn't know much about good treatments or the newest "thing" out there. Not that they are not interested. I think they just don't have the time, which is unfortunate for us.

I'll be doing some research on PID. I do hope your treatment works for you and that it makes you feel wonderfully better.

Check the medications you were prescribed for your sinus infections. There are medications (cipro, levaquin, Avelox) that are known to cause small fiber neuropathy.