I had a ACTH Stimulation Test this morning and just got the results back from my Endo. She said even better than she expected. So now I can start tapering off of hydrocortisone at 1/2 tablet weekly. Currently I am on two 5mg tablets in morning and Two 5mg tablets in evening. It seems a bit fast but she said I could slow it down more if I feel I need too.
It was so wonderful to get good news, it’s been awhile. After two years and two months on steroids. Now I just have to keep fingers crossed that Actemra is doing its job.
Has anyone here tapered off or in the process of tapering off hydrocortisone. I know it’s not the end of GCA but I’m pretty excited.
Peggy
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pmac22
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That's great - but actually, fairly likely after just a couple of years. Just bear in mind though that the synacthen test just shows they are able to work, it doesn't show that the whole shebang is functioning properly and reliable all day, every day, Be aware if you end up in a stressful situation that you might feel a but wobbly! It is said to take up to a year to settle down fully even after being off steroids entirely.
Yes I have - I got Sepsis twice due to a rogue UTI - was put on 200 mg of HC by IV and then discharged on 200 mg of HC to taper down myself. It took over 18 months I found I could only go down every 6 weeks and I can't remember what mg I reduced by - I reached an impasse at 30 mg and had to switch to methyl prednisolone as 30 mg of HC did not supply the anti inflammatory response I needed so I got problems on the 30 mg HC range.
Have you used one of the dead slow taper methods? Are you reducing by .5 mg a week or 1/2 of a 5mg tablet a week? That seems fast unless she is trying to get you to 15 mg quickly and then move slowly down. I had severe flares until I did the dead slow method going down by 1mg and at 10 mg I reduced by .5 mg on the method.
Don’t go too fast. Restarting after a flare takes even more time. 😉
no. I switched back to prednisone. I was at 5mg then started experiencing severe back spasms and flank pain. My Dr thought it was back spasms and upped my prednisone to 40mg. The pain continued and worsened and the. They thought maybe kidney stones. Two trips to the ER, sent home with antibiotics and pain pills. Woke up and the pain had wrapped around to the front abdomen, and was horrible. I thought my appendix was ruptured. Turned out to be diverticulitis. Also went into adrenal crisis, my blood pressure went down to 68/37. They thought I had sepsis than ER dr figured out it was adrenal crisis, pumped all kinds of fluid into me and hydrocortisone. It was a rough 5 days. I am home now and on 10mg of prednisone and starting to taper again. Just starting to feel better.
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I feel great. What's happened? Are my adrenals working?
Adrenals or Not Adrenals 
Adrenal insufficiency 
Adrenals 
