Originally Posted by en bloc

Hopeful,

Sorry, I completely missed that you had posted right before I did, so didn't see it until now.

The steroids are typical protocol as a pre-med to IVIG...to avert reactions. I have ALWAYS received some sort of steroids before my IVIG. Many years ago, I got 40mg Solu-medrol, and now I get 5 mg Dexamethasone (about 25mg solu-medrol). I'm guessing you also get Tylenol and Benadryl as a pre-med as well...because that is also protocol.

I'm a bit confused about your dosing of IVIG. The typical dose of IVIG for primary immune deficiencies (what I receive it for) is 400-600 mg/kg. The dosing for neuropathy is much, much higher at about 2000 mg/kg. So what exactly are you receiving this for? I thought it was for neuropathy...if so you are getting a very low dose and maybe that's why you are not getting the full benefit.

I had received IVIG for 9 years when I got severe aseptic meningitis...so side-effects don't always come along right at the start. I stopped IVIG for several years due to this reaction...and was very hesitant to restart. However, my infections were one after another and I have drug reactions to ALL antibiotics, so my options were limited.

I honestly think the steroids is (at least partially) the cause of your recent side-effects (osteo, BP, cholesterol, and maybe even ketones), BUT that being said, I do NOT think you should get the IVIG without at least some steroids. IVIG is a blood product, so it is a foreign substance and therefore the body naturally tries to reject it...hence why they use steroids, benadryl, etc for everyone. The reactions from IVIG itself can be pretty rough. So, I think you should only reduce your dose of steroids each time, but not eliminate it all together suddenly.

Then you need to look at the IVIG itself...do you want to continue it. That comes down to what exactly you are getting it for (PLEASE pardon me for not remembering your full history). If a rheumy is Rxing then I'm guessing it's autoimmune disease related...as a neuro would Rx for neuropathy.

I would make a personal list what problems you had before, and assess whether any or all of these symptoms are improved (even little ones). Then determine whether something like IVIG is really worth the relief you get and is there anything else that can provide that relief instead.

Hope this all makes sense.