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Looking for feedback on tapering off Cortef

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Glad to hear you are ok to stay on and stabilise. when I took prednisolone recently I was able to eat everything and anything for a period of 6 weeks - even after the steroids had been stopped. Its quite well known that steroids will help MCAS symptoms. I cant take it all the time because I react to pred and steroid hormones always mess me up hormonally every time I have taken them.

Are you trying the next IVIG without the steroid beforehand?
 

Gingergrrl

Senior Member
Messages
16,171
Glad to hear you are ok to stay on and stabilise. when I took prednisolone recently I was able to eat everything and anything for a period of 6 weeks - even after the steroids had been stopped. Its quite well known that steroids will help MCAS symptoms.

@justy What's weird is that I have been on the Cortef for 1.5 years and it did not stabilize my MCAS. It was not until starting the IVIG that it has gone into this remission state (with the exception of when I tried to taper off Cortef and it flared up really bad again) but then stopped the taper and had another IVIG and it's back in the remission state. So Cortef alone didn't cause it but it seems to be the combo of all my MCAS meds, Cortef, and IVIG that is bringing this about.

Are you trying the next IVIG without the steroid beforehand?

Yes, my next IVIG (on 10/8) will be without any steroids. It scares me a little but the high dose steroids caused me so many problems, including the staph infection on my ear, that I really do not want to risk it. Plus, I am really wanting to build up to the autoimmune dose with IVIG and this would be two days in a row of a split dose and I know I will not tolerate two days in a row of high dose steroids.

So this will be a test (at the lower dose, slowest infusion speed, and with Atarax and all the other pre-meds) to see if I can tolerate Gamunex without any steroids. My MCAS doc thinks I can and that if I was truly allergic to it, I would have already gotten a reaction. I will still take my daily 15 mg of Cortef but nothing more. Am hoping this is not a disaster.