There are tons of videos on youtube about the dangers of prednisone. Last thing I want to do is open up another can of worms and do permanent damage. IVIG has risks as well, but less it seems. I have a feeling my PN will be idiopathic but something is definitely attacking my nerve cells.

Isn't there a significant risk associated with IVIG treatment?

Seems to be risk with most everything!

SHORT bursts of steroids seems to be fairly low though except for people with diabetes. adrenals usually recover to baseline pretty quickly when prednisone is short term. We're not talking about people who take steroids to gain muscle. That is NOT a valid reason to take them, they aren't addressing a medical need and do cause damage over time in those circumstances. Long term for any reason can be a problem. Think instead of a Medrol dosepak given for everything from bad allergies to bronchitis to poison ivy. It does have a place for inflammatory problems in short rounds. In the world of potential medical misadventures stopping an oral medication due to side effects or concerns is not too bad a deal.

Unfortunately we sometimes have to take risks for the chance of getting better. When it gets to that point all one can do is get as much information as possible and follow your instincts about what YOUR body might improve with.

So if someone was lucky enough to get this approved for an autoimmune-based neuropathy, how often do you get it? And how long? For the rest of your life? I need to take charge and get some answers, which means I need to see a more knowledgeable neuro & rheumatologist!!!

The dose and time between IVIG may not be the same for everyone. 2gm per kg is a pretty standard dose for CIDP.
I started at 12 week intervals, then 6, then every 3 weeks (all 2gm per kg) I then did 1gm/kg every week for 12 weeks.
It depends on how long you stay stabile on your current plan, if not it may need to be altered.
I've also got other opinions, and found that each Dr, has their own ideas on how it works best as well.
As far as staying on it forever, that's not usually the plan , but it sometimes ends up that way for a lot of people. My doctor believed the only way to ever get off it , is to try to go without it for a while and see how you do.

I have autoimmune Addison's Disease, so i have taken corticosteroids everyday for about 6 years. Addison's means the part of my adrenal glands that make cortisol (as well as other things) is dead. The part that makes adrenaline still works (in spades haha). Autoimmune means my body made antibodies for this part of my adrenal glands, and killed it off. I would die without the daily steroids, taken 3 times a day. That being said, my dose is highly regulated to my body's needs. It is VERY small in the grand scheme of things. I take 20mg (separated into three smaller doses a day to mimic a normal cortisol curve) of hydrocortisone, which translates to less than 7mgs of prednisone a day...and really, it's just replacing the cortisol that my body can't make on its own anymore. Also, steroids used in autoimme illnesses and inflammation treatments are corticosteroids...the steroids used by body builders are different.

Symptoms of too high steroid use have been outlined above by other posters, but it would take very high doses and some length of time for those things to happen, and the damage isn't always permanent. I got very Ill a few years ago, and my steroid dose got increased more than it should have (when seriously ill, people naturally make more cortisol...so my docs were basically guessing at what my body would make for the illness I had, and they played it safe and gave me too much, because being unsafe would mean addisonian crisis and death). Needless to say, I had terribly high blood sugar, gained weight, face like moon, total mess. I was tapered off that dose slowly, and the side effects all went away. If on high enough doses or for long enough, certain damage caused by steroids can absolutely be permanent...and the threat of adrenal gland suppression is a real one, but again, a burst of steroids won't necessarily cause huge damage, and the steroids would need to be tapered very slowly. And there are no promises...bodies don't always react the same. That being said, steroids have saved lives, saved eyesight, and thrown people into remission when bad inflammation and sometimes out of control autoimmune diseases get a foothold.

IVIG shows incredible promise and has changed lives. I don't think it's fair to criticize its use in this regard. It's a powerful treatment, so yes, risks are real, as with steroids and any other powerful treatment...but I think it's efficacy has certainly been proven.

That's why idiopathic is so frustrating, because a lot of neuropathy treatments involve powerful mechanisms, and it's a guessing game when there is nothing specific to point to.

I don't notice any difference in my neuropathy (small fiber idiopathic, biopsy confirmed, non length dependent) due to my taking steroids...in fact, I developed it while on steroids. It's always possible I am on too much steroid each day, and maybe that tempers things for me, but I get blood work every three months to test my various levels, and I have zero indication of too much cortisol in my lab work and body.

IMO when faced with an idiopathic diagnosis, one really needs to weigh the pros and cons for themselves, and be informed as much as possible, and hopefully work with a very good neurologist (or team of doctors in necessary/available) to come to any treatment conclusions.

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.

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