IVIG treatments or long term steriod use

I have been taking IvIg for a couple of years now for several reasons, one of them is nerve pain. I would have to say that I could be in much more pain than I am. Taking steriods is very problematic. Just read how much problems they give people. It is not a choice I would go for.

Our experience on steroid (Budesonide) was to use it 9mg/day during 3 months open capsule to be directly effective in stomach . We had some mouth ulsers and supression of growth but its effect dissapeared jst after stop using .

@suetex which steroid did you take ? How long ? for what purpose

@sinandigestive I took prednisalone (which is a little stronger than pred) for PMR for about 3 years. I had 1 flair.

@sinandigestive How is your insurance company paying for your IvIg? You are very lucky! I have not started any steroids yet.

I take IVIG. I had to google find the documentation for my doctor and he gave it to the insurance company. I was approved. I was on IVIG from age 10-18 and again now. I have small fiber neuropathy. Severe axonal peripheral polyneuropathy. Cardiac autonomic neuropathy, dysautonomia. Mine is caused by autoimmune lupus, connective tissue disease, Hashimotos SJOGRENS. MY BODY DOSNT regulate my body temperature, I have arrhythmias and my blood pressure goes up and down along with pericardal effusion. The problem with long term predicts one is I ended up with avascular necrosis in both hips and fractured the actebulum dislocated hip took me over AA year and a half to walk, still having problems since 2010,

@notborntoburn I am on Medicare and have a Advanteged program. Tell me if you can what is the Dr hoping the steriods will treat?

I don't see the neurologist until Jan 26. I am searching for relief from idiopathic neuropathy constant pain and Sjorgrens. I have constant burning in feet the doctors are not really much help I have tried the usual medications and treatments but nothing seems to help.

My two cents is steroids should be used only temporarily to provide short-acting relief while you wait for a longer acting drug, ie like a biologic, to kick in.

I have been on steroids for 6 years while I trialed different biologic drugs trying to find the right one - I now have steroid myopathy and adrenal insufficiency as the steroids have destroyed my type 2 muscle fibers and suppressed my adrenal function. So while I need to get off steroids - I can’t. So IMHO steroids should be used sparingly and never as the primary drug if at all possible.

I was denied IVIg this week under myopathy, but my doctor resubmitted under neuropathy and it is now approved. If you have Sjogrens with neuropathy and have had multiple primary failures, I believe IVIg can be used. Has your doctor appealed the denial?