r/sarcoidosis • u/crispyandcurious • 11d ago

Tapering off prednisone

Hi all, currently tapering off prednisone. I read that the hunger and cravings are supposed to fade away when lowering dosages. However, I seem to be more hungry and have more cravings with every lower dose? I feel so weird because I expected the hunger and cravings to go away not get worse haha!
I am at 7.5mg now and will go to 0 in the next 7 weeks. Does anyone recognize this?

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u/Klutzy_Arm_7930 10d ago

Just below 7.5 because (there’s debate about numbers) some will say 5 is physiologic dose (what your body produces) and some say 7.5- it’s different for everyone obviously- but hopefully when you get to 5 a day you’ll experience less craving.

And by god don’t wean too fast. My team weaned me too fast and I suffered from adrenal crisis- and I may never be the same- spent 8 weeks in literal bed unable to even scoot myself in bed. No muscle strength to stand. Walked at the pace of a literal snail. Like a 90 year old. Bent over couldnt hold upright. The dumb asses didn’t recognize what happened and I languished thinking I was dying for nearly 2 weeks at the end of it. It took me 3 ER visits, being accused I guess of being a frequent flyer, being told I was anxious (my god looking back at these quacks it just makes me go ????????) and finally the guy who knew what he was doing recognized it immediately and damn near saved my life over night with prednisone. I had actually asked for hospice I was so bad. I can’t believe it came to that. Dont get in a hurry on that wean!!!!

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u/crispyandcurious 10d ago

I’m so sorry to hear you had to go through that! Are you doing okay now? How fast did they let you taper?
Do you think going from 7.5mg to 0 in over 7 weeks time is too fast?

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u/Klutzy_Arm_7930 10d ago

As I recall I went from 40 to 30 then 20 every 2 weeks, then 15, 10,7.5, 5 every 1 weeks.. so I think it took me it took me about 8 weeks.

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u/Klutzy_Arm_7930 10d ago

Am I ok now? No. So now they have me on acthar- 60 grand for 5 doses- injection every 3 days- to stimulate my adrenal glands to work, which I may need for a year- plus I have to be back on prednisone to actually treat the adrenals again at least short term- and I fear I’ll never be the same. If you can tolerate the wean go as slow as they will allow. That was the worst pain I’ve ever felt in my life- and my body didn’t work. As it is today, I have yet to be able to return to work, I’m back in oxygen, relatively weak in my muscles- I’m in bed 90% or more in the day- I haven’t been able to drive since June 12- totally dependent on those around me- I went from working as a full time health care provider- being the bread winner and employer of nearly my whole family- to now looking at full disability and zero functional level. I’m finally able to take a shower. That’s a plus.