Hi Mark -

It is smart of you to ask all the right questions.

The steroid sparing immunosuppressants, in the opinion of my dr, are typically considered safer than long term, high does steroids for a variety of reasons.
One reason to consider: Since the Pred will replace the body's natural production of cortisol your adrenal glands can become "lazy" after long term use.

Here's the hiccup: when you try to taper, in some instances and depending on the dose and duration, the glands don't want to turn back on. Then you can become "steroid dependent" for life.

You may already know all this so forgive me, if so, but I didn't fully appreciate this until well into my course at which point I sought the guidance of my endo. The trick when tapering is go slow - painfully slow - so the adrenals "wake back up".

In my autoimmune travels (ie waiting rooms etc) I have met a number of patients where this was the case (some being treated for Lupus, MG, Crohns etc) and the overwhelming sentiment was that they wished their drs had properly warned them of not only this but of other side effects.

The other s/e I experienced were:

1. Bone Loss and associated stress fractures (after only a short time)
and enamel loss. My teeth thinned.
2. Refractory thrush (meaning it was VERY VERY painful in my mouth/throat and would not clear until after I was off the pred despite heavy duty antifungals)
3. Multiple skin infections
4. The fattest face in the world (I refuse to call it moon face bc the moon is beautiful and this insane swelling was not). Unlike most ppl who fully reverse, I still am dealing with it 6 months later. It is much better but still not my face.
5. Damage to my stomach lining. Long term pred can cause ulcers and other lining issues. I am just going through it now. It has been painful.
6. Joint problems

These all in their own right have diminished my QOL and yet I have heard far worse horror stories. Again, I don't mean to alarm you but I do wish someone had laid this out for me. I would still have tried the pred but I would have taken protective measures like:

1. a low sodium diet
2. Use vit d and calcium
3. Use antacids to protect my stomach etc.


I will write more later on IVIG/other treatment options. My eyes are tired and I know if anyone gets that it's this group

Last thought: IVIG is typically offered last bc it is the most $$$$.