How did you cope with the side effects tapering off prednisone?

Hello! I am attaching a Mayo Clinic post on discontinuing prednisone too quickly 👍

Diarrhea is a known symptom of adrenal insufficiency. Hopefully your doc is aware of your symptoms.

Yes he is aware of my symptoms but feels it isn’t related to prednisone or tapering. He said if it persists to see a gastroenterologist. From my research I felt it was related and wondered if anyone else had the same issue. Apparently they have . Thanks

Not playing doc here, but…It would seem that a lab test for morning cortisol levels would clarify the issue.

Gastric problems are a known side effect of prednisone, with or without adrenal insufficiency. That's why they say prednisone should always be taken with food. Some people get gastric problems from prednisone even when they do take the meds with food. It may not be connected to tapering.

I am down to 3 mg for the third or fourth time in my 6th year of this and taking at least 2 weeks for a .5 mg taper. My rheumy said 5 mg mtx would not be enough. I decided that for me the mtx side effects were too risky.
Only you know how your body feels, it's the uniqueness of this affliction and how your body reacts. Perhaps your Dr has never had a patient with your exact symptoms. " how do I get my rheumatologist to listen to me?"
Prednisone could set off a chain reaction in your body setting off symptoms that you don't realize are from increasing/decreasing your prednisone dose. You need to connect the dots. Besides my pcp I'm seeing a rheum, cardio, ortho, ent, opth. You cannot have Drs with 'tunnel vision', they need to see the big picture. If your specialists are reporting back to your pcp you're better off. My pcp is good at connecting the dots.
This is a bumpy road we are on.

I have had diarrhea since I was diagnosed with PMR and started Prednisone. I blamed the medication. Both my rheumatologist back in October and and my primary physician in December said Prednisone did not cause diarrhea. My doctor sent me to a GI doctor last month and I had a colonoscopy. Turns out that I have Lymphocytic colitis, another autoimmune disorder that must have occurred with the onset of the PMR. Not quite sure why my Rheumatologist wouldn’t have thought of that but grateful now I have an answer. I meet with the GI doctor soon to receive treatment for it. It has gotten a bit better on its own, too, but some of that is probably because I limit fiber.

Does anyone here take Kenalog injections instead of prednisone?

Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've discussed the fact that there appear to 3 types of PMR sufferers. Type A respond well to doses around 20mg and can quickly taper at 2-5mg at a time and get to zero in a few months with good remission rates. Type B need to taper a lot more slowly, 0.5 to 1 mg at a time, over a much longer time frame and often get 'stuck' once they get below 10mg and have flare ups but can get to zero in a year or two. Type C will generally be on Prednisone for many years and are classed as chronic sufferers. The type doesn't appear to relate to severity of disease at onset, its most likely genetics. Strange symptoms can crop up at any time during Prednisone tapering.

This was way back but yes I do! My forearms and the tops of my hands are awful. I can't wear short sleeves out anywhere because people stare at me. So in hopes when I finally taper back down below 7-8 it will get better.