Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Thanks for your answer. She has me on a tapered schedule. I was doing pretty well at 12.5; the pain is much worse at 10mg so I'll see if the 12.5 is enough to settle the pain down again. She did say to increase if needed. Some of the side effects of the prednisone have lessened so the insomnia and insatiable appetite are not so bad, the jittery feeling is also better so I was hoping the lower dose would be enough. We'll see.

What really helped me with tapering slowly was my rheumatologist providing prescriptions for the 1 mg as well as the 2.5 mg prednisone tablets. My first round with PMR took six months of back and forth between 1 mg and 1/2 mg until I was finally able to taper completely off of prednisone.

Interested in the 6 month from 1mg down I got to 1 but then had like no Adrenalin symptoms ended back up on 2 wondering how to get down again ...

Hello @ingekunga, Welcome to Mayo Clinic Connect. The 6 months of back and forth between 1 mg and 1/2 mg prednisone was after 2-1/2 years of being on prednisone starting at 20 mg dosage for my PMR diagnosis. My Mayo rheumatologist suggested slower tapering off by trying to go down by 1/2 mg every 2 weeks. Early on in my diagnosis and struggles tapering off of prednisone, my rheumatologist suggested keeping a daily dosage and pain log tracking how I felt on a scale of 1 to 10 with the pain. If the pain I was feeling in the morning was 2 or less when it was the day to taper to the next lower dosage, I tapered down. If was more I stayed at the current dosage a few more days to see if it got better. If not, I went 1/2 mg higher.

Can you share a little more about what you mean by no Adrenalin symptoms and ending back up at 2mg dosage? Also, have you discussed tapering down with your rheumatologist or doctor to see if they may have some suggestions for you?

was taking 10mg after very slow taper from 15mg..on 2nd week of 10 and began having hip pain and sever fatigue..checked CRP which was elevated so back on 15mg..one odd thing i noticed is that whenever i get a flair my vision gets a little blurry..anyone else have this experience

Re blurry vision I have had some recent experience with it but have not logged it as I saw it as not related but I will take more notice of it now so thank you. Started on 9mg today for next five weeks from 10.

Hi john I have been on pred a year and a half my going downhill .5 at a time was doing well. When I went from 1.5 to 1 I slept couldn’t get up dizzy I’d forced etc. I went back up to 1.5 band after couple of days better. My Gp said adrenals not producing cortisol. It put me into a higher pain level so went back up to 2 ok on that. I would like to go down again. One specialist said to go down . 25 at a time and the rheumatica clinic suggested varying the dose like 2 one day then 2.50 the next add no back again. I like your pain level idea - though I do have a problem deciding as I had arthritis in thumbs before pmr so what is age and arthritis and what is pmr on rise. It’s great to have people to chat to.

Hi @ingekunga, Depending on the day, I had a problem deciding on the pain level also. I think that's normal since each of us are not the same with pain levels. I think there are other members here in the discussion who have varied the dose or split it between morning and evening to see if it helped with their pain levels and tapering. I never had a pill splitter good enough to split the 1 mg tablet twice to get the .25 mg dose. Hoping you and all of our PMR friends have a pain free day!

Thanks to everyone for sharing your experiences. I have been dx & on Prednisone 20mg for 2 wks. Feeling 80% better. Sleeping great since no no more pain with every turn. No insomnia from Prednisone yet thank goodness. Dr. may try tapering at 1 mnth. depending on labs & sympt.

GCA/ Giant Cell Arteritis which is linked to PMR can cause vision changes and dizziness. I was told by my Dr. to report these changed as well as scalp tenderness ect.