Can IVIG or corticosteroids cure PN if caught early enough?
 

I've read for some people, such treatment has reversed the PN or made it go into remission. My first neuro recommended Prednisone but after doing more research on the horrible side effects, I passed. But now i'm wondering if I made a mistake and should have taken it when my symptoms were mild. Can immunsuppressants allow the body to heal quicker?

Some people on this message board have done small trials of Prednisone. I don't recall any successes. At this point, I would try Prednisone for a few months if someone offered it to me since it doesn't look like my full body burning is going away anytime soon :(

http://www.neuropathy.org/site/DocSe....pdf?docID=944

Hi Tunaboy, hopefully the attached link comes through on this message. Someone kindly sent this to me yesterday. It was really informative ref how some immune mediated neuropathies may be tackled. It is however confusing as many of us don't know the exact type of neuropathy we have and the mechanisms behind it. I don't at this point anyway. So knowing which exact treatment may be best is difficult. Trying to access it may also be a problem. I already have a diagnosed autoimmune condition so I'm convinced my neuropathy is autoimmune. I had one corticosteroid shot a few months ago and it had no impact on my neuropathy. I don't think one corticosteroid shot will cause you problems in terms of side effects so one shot of that may be worth considering? I'm no expert but just wanted you to know that one corticosteroid shot caused me no problems or side effects at all.

Tunaboy
Speaking as someone who is on 3 different steroids (maintenance doses) for managing an autoimmune condition, they have made no improvement to my PN - including a spell of very high doses last Oct during surgery.

However that said I think it very much depends on what type of PN you have and what caused it. Steroids may be temporarily effective for some types. That's why getting as definitive diagnosis as possible is important. The long term effects of steroids are nasty and their use for PN should only be considered when all other options have been exhausted.

Thanks JoannaP79 for the article link - I haven't read it all yet but it looks to be one of the most comprehensive I've seen so far and deserves a more thorough perusal.

Hmm..

Has everyone tried IVIG? It seems to be the most promising, with some people showing significant improvement or even going into remission. I am going to try to get this since I am in the early stages. So my question is, besides the cost, how come more people aren't on this treatment? It seems like the only solution to stop the body from attacking itself, thus allowing it to heal.

I think cost is big thing with IVIG. It runs upwards of $3K depending on much is needed. If the PN is autoimmune then certainly IVIG would make a difference. For that matter, IMHO if it's early autoimmune-y, say a body's hyper reaction to something that maybe isn't a full autoimmune disease (think drug or viral reaction) then steroids knocking the immune system down a notch could be helpful before all the damage is done. I wouldn't be afraid of a short course of oral steroids. You're not talking long term. I think you'd know pretty soon if you had something that would respond.

I've been told funding is a key issue for the NHS (UK). I am told it may not help and could cause more harm than good. You just dont know whether they are saying that just to deter you or not. I cant find enough on the internet about SFN and IVIG. I have searched all over for weeks and there aren't a great deal of studies or trials out there. :(

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.

Interesting article. I don't know why but I have never had good reactions to steroids. Also, when I had surgery before all this started, I was given IV steroids and now i'm worried that might have been a factor.

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