It ALL comes down to what the root cause of the PN is. if the PN is inflammatory based, then steroids can be helpful. If it is autoimmune in nature, then IVIG can be helpful. Both carry risks.

Steroids can (and usually will) cause permanent damage to various things, including bone density, skin (causes paper thin skin), blood sugar (steroid induced diabetes), weight gain, glaucoma, moon face (and other fat pad swelling), and potassium loss...and that is NOT the end of the list. Patients (like myself) can end up with Cushing's syndrome and in some cases the body completely stops producing it's own cortisol.

IVIG carries risk of stroke (but it's not a huge risk). There are many side-effects like headache (very common and can be very bad), chills, tachycardia, etc. The biggest problem with IVIG is the cost. Not sure where you got $3 for an infusion...it is far more than that. My current infusion (once a month) is in excess of $30,000!! And that is not even the actual dose for neuropathy (it would be double).

But again, it all depends on the cause and what you're treating to know whether it would be helpful. If SFN is documented by skin biopsy, the IVIG is know to help increase fiber density, especially in autoimmune cases.

Hope this is helpful.

Thanks for the info. I don't know the exact mechanism of how IVIG works for some people, but I would think that since it stops whatever it is from attacking the nerves, this would allow the nerves to heal. Of course the treatment would have to continue for an extended period of time. I don't think I could just take pain meds, knowing that my nerves are continuing to degenerate.

My guess is unless there is a clear etiology for the PN insurance is not going to cover IVIG treatments. That's very expensive treatment and would likely require documentation from the physician's office of the cause of the PN and how the IVIG can treat or cure the PN.

Case in point I worked with a guy that came down with Guillain Barre and was immediately hospitalized. In his case the IVIG was the first line of treatment cause he had a clear diagnosis.

You are right...there must be clear etiology and documentation for IVIG to be approved. This is one of the reason I suggest people get the skin biopsy as it's typically required for approval of this treatment.

That being said, I have Medicare (who rejects treatments frequently) as my primary insurance and it pays for this for both my immune deficiency and treatment of immune mediated neuropathy. So it is possible to get this treatment...but those in the UK will find it much harder.

The exact mechanism is not fully understood...as you'll read in this article. But IVIG is like an immune modulator and helps to organize the immune system for better function (when autoimmune diseases attack the body). Once the attack is no longer against the nerves then I guess they can start to heal.

http://www.medscape.com/viewarticle/730670_3

Thank you en bloc and I would bet with your autonomic neuropathy more aggressive treatment like IVIG is warranted.

It kinda sucks because what if your PN hasn't progressed enough to result in a positive biopsy. Then you won't get early treatment while your symptoms are relatively mild, which has a higher chance of full recovery. Instead you have to wait until you get bad, then get treatment but by then it might be too late

Yep the same could be said for heart catherization. If you have elevated cholesterol they wouldn't do a heart cath unless you have significant symptoms. Heart caths carry risks and are an expensive procedure. You basically have to progress to a point in heart disease were more risky and aggressive is warranted. This might not be an exact parallel but similar.

I worry about this exact thing. I have SFN confirmed by punch biopsy, significant loss of density, burning only started sept / Oct and its awful already. Spreading and I fearwwhatstate i may be in within a year. Its pretty obvious mine is autoimmune. Being deterred at every juncture from ivig. Cost and resource always the issue. I am still pushingto be considered but I know how ruthless they are when it cones to resource. I am not at deaths door so am not severe enough. Also, in NHS guidelines there is no mention of use for Sfn.

Ivg carry risks. Because it is a good way for infections to enter your body. If on is caused by autoimmune and inflammation. Certain corticosteroid can be used but for limited amount of time. If you the very Strong's like clebestatol or acetonide those are strong enough to affect to suppress certain hormones. If its a topical cream. The side effects are dry and skin thinning. If on is caused by injury or genetic relatrd . pain meds are used instead. From what I read about ivg. Its very expensive and it doesn't have efficacy.