5mg of prednisone longterm experiences?

I’ve been on prednisone for 21 years, my doses have been high and low, the last few years have been horrible with weight gain moon face, GI issues, my body is screaming at me it hurts so bad. I’m trying to slowly taper off from 10mg to 5mg but it’s been so hard to get off of them. If I taper just 1mg I’m more fatigued than normal and body hurts worse also. My body does not like the withdrawal. And also being on them so long I have osteoporosis to where my hips are going to snap in 10 years. Whatever you do with the 5mg of prednisone, please do not stay on it long. All these years my doctors pushed and pushed prednisone on me. Finally I get an RA doctor that does not want me on it. It’s a long process

have you had your cortisol levels checked, possible Cushing Disease especially with moon face. I had cortisol level tested doctor found tumor from my CLL ON my adrenal gland, had to have it removed.@halo49

@kobebeef2026 hi there, no I haven’t had it checked but I did go to my primary and right when he walked in he said “I can tell by looking at you that you have cushions disease” and proceeded to tell me why, but never checked to see for sure. I didn’t know they do an actual test. Do you think I should get a second opinion?

@humbug it may be worth trying 5 mg alternating with 2.5 mg before going straight to 2.5. Maybe something to discuss with your doctor

@halo49 yes, an endocrinologist is the person to do it if you're going that route to do it right. There are tests that will assess how well your adrenal glands are working and whether or not you have Cushing's Disease. Once they figure that out, they'll advise on where you go from there. If your primary said "Cushing's" just by looking, I'm going to guess you might have 'moon face'??? (like me, lol) Good luck 🙂

@pm56 oh yes I have the moon face, pregnant looking belly and the buffalo neck. And thank you for that, I will call an endocrinologist next week. I do not know if it’s just me or what but my doctors seem like they got the degree online. The only doctor I do have that seem to care is my RA and that is 21 years worth of doctors I’ve been through. When I did have good doctors they retired not too long after I see them. Thank you very much for that info.

@halo49 that always seems to be the way! The crummy ones hang around forever but the good ones you get a couple of years and then they’re gone 😩

I’m in the same boat. I haven’t been able to taper, thought my adrenal gland worked as I did an early morning cortisol test with my rheumatologist and yesterday found out from the neurologist - “not so fast” … I need a more in-depth test with an endocrinologist as it’s hard to differentiate whether my symptoms are being triggered by my underlying rheumatic disease when I try to taper or if it’s just adrenal insufficiency as the symptoms are so similar. Or to make it even more complicated - could it be both simultaneously. Keep asking questions and advocating for yourself!

@laura1970 Thanks so much for the tip! Yes, I will definitely defer to my doctor about this.