my neuro diagnosed me with SNF and then said he couldn't do anything so discharged me 😒 He has been pretty ineffectual to be honest.
I have since seen a rheumatologist and been diagnosed with sjogrens but no offer of treatment for the SFN other than the hydroxychloroquine for the sjogrens which will apparently help stop the SFN getting worse.

This makes me so angry I could use alot of expletives right now. I have read numerous reports / studies stating that ivig has improved outcomes for some with sjorgens related sfn. Is this a big conspiracy or are some of the neuros stupid? It just has to be the cost and lack of clinical trial data.
I do understand concerns regarding risks but they seem to be far less than some other immune suppressing treatments.
Can you change neurologists?
Feel your pain - literally. My neuro has just sent me away with 6 month check ups but I have been emailing persistently to ask for Ivig based on my own research.

Ok.....what is IVIG? I'm seeing my THIRD neuro doc on Oct. 14. I've learned more on this board than from ANY neurologist I've seen. They tried to tell me I had anxiety!! I have SFN and I believe I may have autonomic neuropathy too....2 phys therapists (1 is a Dr) have told me something is affecting my diaphragm. .......????????

I have Sjogren's related SFN/PN and receive IVIG. I'm sure it is the cost factor that keeps doctors from using this treatment more often. They are probably 'encouraged' to avoid prescribing IVIG.

You are correct about the risk, but as you say, 'some' other treatments actually carry more serious risks than IVIG.

One of the other reasons I think IVIG is held back from treatment is availability. It is a blood product and therefore subject to shortages. So criteria for prescribing is tough. If they gave it to everyone with even mild cases, then there would not be enough to go around. But the catch 22, is that if they used it for early/mild symptoms, they would probably have excellent results (catching it early).

IVIg is Intravenous Immunoglobulin. It is antibodies from blood donors. It takes about 2000 donors to make ONE dose of IVIG. That is why the cost is so high. My treatments run over $30,000 each (once a month).

The reason it is helpful for autoimmune based neuropathies is that IVIG is believed to help modulate the immune system...that is attacking its own body. The exact mechanism of action is unknown, but this is how they believe it helps the patient.

Hopes this helps.

Thanks en bloc. My neuropathy came on about 1 year ago. It was mild until December when the pain started. Does that mean too long for any hope. I worry that I haven't been caught early enough and now may have to wait few months more if I am able to access it
My symptoms are severe and debilitating so feel I am way beyond mild stage sadly.
Appreciate that it all depends and my question may not be easy to answer.
Thankyou en bloc for the really useful info :-)

Katekline, I don't know if you got my private message but I have covered some of the acronyms I have used in there.
Jo :-)

I don't think that is too long at all for possible improvement. Of course, the earlier the better, but starting agressive treatment by that first year is pretty good...being that many wait MUCH longer just to get a diagnosis.

It's just sad that you are having to fight for a treatment that can possibly help and should already be prescribed for you with your documented conditions. But it's all about cost and being a blood product drives that cost up. I have heard about others on NHS that cannot get IVIG...even though they have well documented conditions. Just keep pushing until you get it. Go ahead and get on the list for another neuro opinion (if you can) while you continue to fight with the one you have. Don't give up!!

In the meantime, you may want to consider other treatments (immune suppressors, and/or steroids)...if you haven't already tried them. Anything to help slow or stop progression and/or reduce the amount of damage/inflammation.

Thank you en bloc..I will keep on fighting to access it. I was taking entanercept ( enbrel) for my other problems but stopped it as I was worried about the nerve damage I already have. I get very frightened about making things worse. Problem is I am now in an awful state with severe inflammation in my eye stomach problems and awful neck back shoulder and joint pain from the AS. It has shown me that the enbrel was suppressing that. I fear I may not get ivig if I stay on enbrel as neither the neuro nor rheumy have a clue about taking both.
Things are just horrific right now to be honest. I can't even take naproxen or tramadol as I think one of them is causing my awful stomach problems.

Have you considered a short course of steroids...to see if your neuropathy and other symptoms are largely inflammatory based? If not, then it would be a wise choice...not a long course, just a taper pack. If your SFN is more inflammatory based, then you might feel much better (immediately). It's worth a try, just to determine (and learn) the amount of inflammation you are dealing with. Labs may/may not help tell you about your level of inflammation, but they are not very accurate.