Reducing predisone side effects

@dvorahberlin
I started at 15 mg in December, 2025 and this week am at 4.5 mg. I am noticing some discomfort at this stage and may stay at this dosage for a while. I had been tapering 1 mg per month before mostly and reduced to tapering 1 mg every 2 weeks. I hate the weight gain (15 lbs) .

@pmrsuzie I would follow your PCP’s advice. One problem I’ve had, is second-guessing the dosage. Heat and humidity makes me feel so much worse. I told my rheumatologist a month ago that I wanted to taper-off my prednisone completely. I’ve gone from 5 mg. in a month to 0. Hip pain came back, better today. Knuckles are hurting some. A lot of stffness going walking, and going up and down stairs. I think muscle atrophy is a lot of my problem, so trying to keep-up my protein intake, and walking 1 mile a day. All that being said, if 2mg. makes you feel better right now, follow PCP’s advice. Try doing things you enjoy this summer. That will make you feel better mentally, too. Don’t get discouraged. Prayers!

@gilbert56
Thanks for your reply. I was having a lot of hip discomfort during the taper from 3 to 2mg and made an appointment with an ortho Dr who specializes in hip problems. I wanted to know if my problems were arthritis related. Seems like I have some arthritis but it's "not too bad" so he said. Once I settled in at 2mg the hip pain has subsided. Still having some trouble with stairs but it's better. He gave me a script for PT which I'm starting in two weeks. Staying at 2mg to build up strength til I see the rheumatologist in Aug.
I'm trying to avoid taking any pain meds even Tylenol.

It's always best to follow the tapering schedule provided by your doctor. Any changes you want to make should be discussed with your doctor. You are going to feel some changes or discomfort at each change in dosage. It should only last for a few days until your body adjusts to the new dose. If your body doesn't adjust before the next decrease, then discuss it with your doctor. Tapering schedules are generally flexible and taper effects can vary from person to person. Flares and adrenal insufficiency are to be taken seriously.

@kjoed53
I will admit to not always following the tapering schedule provided by rheumatologist. A couple times following his schedule I got into trouble resulting in spiked crp and going back to the dose that had been working. I think some pmr patients are classic textbook cases and some are not. I am not. I have tried to find others who also have cppd, Meniere's Disease and recently was looking for others who have no gallbladder. Very few if any patients like me. Part of my problem is that I am not a fast thinker and during an office visit I listen to the discussion we have and I agree to it. I go home and rethink everything that was said and confusion sets in as to if I'm doing the right/best thing. I see my PCP more often and always discuss what I am doing with her. My next rheumatology visit is next month. I'm not exactly on track with his plan but it is what it is, I'm feeling pretty good and I'll be sure to understand the logic of what the plan will be.
The no gallbladder question I posted evoked a very interesting response from one member. I hope that topic is not overlooked.

@pmrsuzie

Maybe there aren't too many people with Meniere's, CPPD along with PMR. However, I'm at least one person with PMR along with several other autoimmune conditions as well as other non-autoimmune medical conditions combined with "long term" prednisone side effects.

PMR and a history of long term prednisone use on top of everything else makes my entire medical picture much more complicated. I understand how you feel.

You would not believe how much Prednisone I took before I ever had a primary care doctor or a rheumatologist. I was regularly seen by a fantastic ophthalmologist but he only treated my eyes for about 15 years before I was consistently seen by a PCP and rheumatologist for another 25 years.

I still have my gall bladder but a surgeon wants to take it out. I'm now being seen by an oncologist who says the medication (Lanreotide) will likely cause me to have gall stones. Surgery to remove my gall bladder along with other abdominal parts of me is said to be my best option. I'm going to refuse surgery and will take the medication that will treat me and hope I won't have gall stones and/or bowel obstruction.

The oncologist I now see is also an endocrinologist but not the same endocrinologist I have seen since I tapered off prednisone. My endocrine system was messed up by prednisone but now there is a major problem with many of my hormone levels. It is hard to find a normal hormone level in my body anymore. I didn't know there were so many hormones. I was only worried about my cortisol level,
https://www.yourhormones.info/explore/discover/why-do-we-need-hormones/

@dadcue
Is your gallbladder making you sick?
We were only married 6 months before the problems started. If I ate something that did not agree with me and we were in the car, we'd have to pull over and I'd open the car door to throw up, That's what made me get tested. For some reason the surgeon wanted me to take Vitamin C tablets and I ended up in the ER with the worst case of hives. They said nobody could be allergic to vitamin C, was a 'filler' in the pills, the tablets were huge. Took so much Digel it made me gag.
I hope you're able to keep it under control. I didn't have a choice. I was working at a hospital that was nice enough to make a special diet meal for lunch.
Thanks for the link, I'll read it tonight.
Your diet will be important

@kjoed53
I will admit to not always following the tapering schedule provided by rheumatologist. A couple times following his schedule I got into trouble resulting in spiked crp and going back to the dose that had been working. I think some pmr patients are classic textbook cases and some are not. I am not. I have tried to find others who also have cppd, Meniere's Disease and recently was looking for others who have no gallbladder. Very few if any patients like me. Part of my problem is that I am not a fast thinker and during an office visit I listen to the discussion we have and I agree to it. I go home and rethink everything that was said and confusion sets in as to if I'm doing the right/best thing. I see my PCP more often and always discuss what I am doing with her. My next rheumatology visit is next month. I'm not exactly on track with his plan but it is what it is, I'm feeling pretty good and I'll be sure to understand the logic of what the plan will be.
The no gallbladder question I posted evoked a very interesting response from one member. I hope that topic is not overlooked.

@pmrsuzie
If you discuss it with your PCP, then you are not just doing it on your own. You have covered yourself by involving a doctor who can steer you away from something that could be harmful. We usually have more than one doctor in our treatment.