How to Slowly and Safely Taper Off Prednisone but ... no set rules.

My doctor has said that inflammation markers also rise as we age, and a “normal” sed rate for me is between 30 and 40, where it has been most of the time since starting prednisone. It was 77 at diagnosis. I know ultrasound is certainly not definitive in diagnosis, but possibly helpful and may be used more in Europe. I seem to remember reading that in another thread on this forum. My question is: what exactly appears on the scan to suggest PMR? I am having it on Monday and seeing my rheumatologist a week later, and will report back.

trying to get off of prednisone - started at 10 now at 8 - itch started today...........what can I take to feel comfortable?? and yes I have polymyalgia pheumatica

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How to Slowly and Safely Taper Off Prednisone but ... no set rules.
Posted by DadCue @dadcue, Sep 28, 2024

I now have Adrenal Insufficiency from being on Prednisone for a year. My Endocrinologist says there is no proven safe way to taper or to avoid an adrenal crisis and is really all over the place with the instructions she gives me to taper. Now she says I can try staying on 5 mg and 2.5 mg every other day for 3 months then see her again, or try 4 mg for 3 months and see her again, she left it up to me! Neither of these make any sense to me. She also says there is no lab test for adrenal insufficiency that is really accurate. I feel very defeated because I can’t go anywhere else for a second opinion and I desperately want off of prednisone but I’m also now terrified of an adrenal crises because of the severity of the symptoms I have when I try to go below 5 mg. Has anyone been in this situation?

There is something called a “dead slow taper”
1 day new dose-6 days old dose
1day new dose-5 days old dose-and so on for 4,3,2 and 1 days.
Next 1 day old dose-2 days new dose
1 day old dose 3 days new dose
1 day old dose 4 days new dose
1day old dose 5 days new dose and continue this pattern. There are some people in my support group that use this.

I’m tapering and at 7mg now. I take Tylenol occasionally and it works well for me. Check with your MD first. Good luck

I'm going down 1/2 mg per month. If I hurt, I first try 8 hour advanced strength Tylenol.... basically 2 regular t
Tylenol. If I REALLY hurt, I take an extra 5mg to 10mg of prednisone for 1 or 2 days. Usually 2 days does the trick. Then back to regular dose I was taking before the temporary increase. It's like sometimes the body just needs a hug with some extra prednisone and then it's OK. Lol. If it helps, I currently take 200mg of
Hydroxizine in the morning and at night. My Rhemetologist said it would help with the symptoms and help me wean off prednisone. He has/had no set path for me other than to get off prednisone quickly... but no set directions. I am the one who knows my body and I listen to it. 😉 I started back in June 2020 and am down from 15mg to 4.5. I asked him for 2.5mg and 1mg pills so that when I taper I don't have to cut pills in half and then have to worry about if they are the exact amount needed. I keep my old 5mg for the occasional flare and that seems to knock it out. Everyone is different. I consider myself very fortunate as some deal with a considerable amount of pain, and some with clueless and/or uncaring doctors. This is an excellent forum for us all and I pray everyone will one day be pain free. Virtual hugs to us all! 😉

Very sorry to hear what you’re going through. Of course follow the best instructions you can get from the best doctors. Just a few things I wanted to say based on what my drs have said in the past. I don’t think it’s true about testing for adrenal insufficiency. There are two tests, a morning cortisol test and then a more specific test that should help you. Any possibility you can see an endocrinologist?

"It's like sometimes the body just needs a hug with some extra prednisone and then it's OK. Lol."
---------------
I used to say that I needed a "prednisone fix" whenever I increased my prednisone dose. It is good to retain a sense of humor.

After I realized that prednisone replaces the cortisol that our body normally produces, I started saying that I needed a "cortisol fix" when I took more prednisone. That was more accurate according to my endocrinolgist who diagnosed adrenal insufficiency. She said my body would need to fix my cortisol level and more prednisone wasn't the best solution.

Since I took prednisone for 12 years to treat PMR and other things, my endocrinologist said taking less than 5 mg of prednisone was going to be a tough thing for me to do. I told her less than 7 mg was impossible for me to do.

My endocrinolgist referred me back to my rheumatologist to see if there was something else that would treat PMR.

Thank you to everyone in advance for your insightful comments and support. Much appreciated.

My question is this -- I have been tapering off of prednisone for the last month. It seems that I have pain in the morning, not totally disabling, but significant. I take the prednisone and the pain gradually diminishes, so that by late afternoon or evening, I have better range of motion and am almost pain free. I also take a tylenol if the pain persists.
I'[m wondering if other have had this experience as well. It seems that, regardless of the dose, this has been the pattern.