Wow! You've been really helpful! I will totally look into all of that.

I'm so sorry you have been through so much. I can sympathize with your steroid troubles and side effects. I too have them. I'm dependent (now) on prednisone (10mg daily) as I have been on them for 14 years - take it everyday. We found osteoporosis when I was 26 years old - I had my first bone density scan. I developed cataracts at age 16 from the high dose initial treatment. Thin skin. You name it- just like you I'm sure. It is frustrating but gosh, I love and hate that drug!!! Increases when I need it provide much relief.

Ironically I notice a chance for the better in my dysautonomia symptoms when immunosuppressants have changed. I was switched from AZA to arava and my gosh I was finally able to be on my feet again!!! I even started sweating again. Back in 2010 an increase in prednisone from 5mg daily to 7.5 also helped dysautonomia symptoms. Going to 10mg helped even more.

I've slowly been getting worse the last few months (but not nearly like I used to be) and my plaquenil was decreased (I was getting areas of hyperpigmentation on my skin and rheum wanted to decrease due to worry about toxicity). I used to run orthostatic back in 2008/2009 but that orthostatic hypotension resolved. I believe when plaquenil was added into my drug cocktail.

I have learned small meals are my friend! When symptoms are bad I fast. I really need to start not eating after 6pm because sometimes I'm up throughout the night vomiting. So thank you for that recommendation. I will add that into my routine. I see a GI specialist who specializes in motility. I was suppose to have an endoscopy on Thursday however I cancelled it until I see my neuro. (I get very hypotension when sedated so I've been nervous about it. Going to put it off until sept and can talk to the neuro about any special things they need to do when I get sedated)

Sorry to hear about your immune deficiency. My grandma had hypogammaglobulinemia. Recently I had my levels checked again as I was requesting IVIG and I was at 796. They would give IVIG if I dropped to 750 but not the high doses like I wanted. Maybe now they will.

Glad to hear you're in good hands at hopkins. Anything you can think of to throw my way in terms of what you've learned would be awesome! I got a little worried when I saw adrenergic failure on my results.

Hoping I can at least gain more energy and get back to work. I had to stop working in 2010.

I certainly hope the higher doses of IVIG work for you. I'm sorry yours has gotten to such a bad point.