How to address PMR pain while decreasing prednisone

Hello @merkadale1943, I would like to add my welcome to Connect along with @legendts and other members. I'm happy you found this discussion so that you know you are not alone and can ask questions and share your experiences. Do you mind sharing what you were searching for when you found Connect?

You must remember the goal is to reduce only to where you feel little or no pain, not to reduce to 0 mgs Prednisone. You must also consider whether your adrenal glands have awoken enough to produce the cortisol that pred has taken the place of. PMR is unpredictable as to when it goes into remission or into a flare.
No doctor has told me not too drink alcohol. A question was asked on another forum about what their favorite alcoholic drink was and most responded. Because I also have an ulcer, I have stopped drinking wine but I do have a daily brandy coffee with honey.

Regarding my ulcer, I should add that it was caused by Ibuprofen taken in large quantities without food before PMR diagnosis.

I’ve had PMR for almost 6 years. I was told by my Dr. that they could tell by how fast the disease reacts to Prednisone. It’s a wonderful drug but it is difficult do get off of. I took my first Moderna vaccine and 5 days later had a flare up. We back up to 3mgs from 2 the and pain went away within a few hours. I had a test a few hours ago to assess my adrenal gland output and there was not much output. So thankful that I found this site just to vent a bit and see that I’m not the only one on the PMR island.

@josteman we are happy you have found this site as well. It is so important to feel understood and to get support from others who understand. It is also so important to keep seeking answers and improved health. Cheers to you for doing both!

I am 84 years old and have been having severe pain in hips and back for almost a year. Diagnosed with severe arthritis of the hips and stenosis. Could not have hip replacement because of other issues. On several pain medicines which really don't help. Yesterday laying in bed trying to sleep I thought back to 15 years ago when I was diagnosed with PMR and it lasted for over two years. Went from 20 mg to 5 until I finally got off of it.. I had some prednisone that I took, 20 mg and the pain went away. I believe that I have relapsed. Don't know why the doctor didn't think of that as it is in my records and he told me once it could come back. Anxious to get up in the morning and call him to see if the tests can be done. Has anyone else relapsed after this long a period? Any one else have that long a time between relapsing? Hate to think of going through this again but I was unable to walk and spent most of my time in a chair. At least taking the prednisone I am up and around and even walking.

Hello @lori0570, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I think the answer is yes, PMR can come out of remission and with a vengeance some times. Mine went into remission for 6 years and I had to go back on prednisone for about a year and half. Your doctor can order some lab tests - Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are blood tests that can be used to check the levels of inflammation in your body to see if they are high.

Did you have some left over prednisone that you took and it made the pain a little more bearable? You might want to check with your doctor because most medications, including prednisone, have a shelf life and may not be safe to take after they are expired.

It was impossible for me to exercise. I finally felt stable enough (started 10 mg Prednisone July 19, 2021) to try 3 min on treadmill 3 x's a day..so about 10 min. I did this for 5 days. Terrible symptoms, not the full set, but back muscles very tense and aching. I talked to Rheumatologist. She said stop for a bit...too much from zero to 10 min for my body it seemed. It took me 2 weeks to get free completely of any of those effects! I marvel at those who can exercise. So far, no way. I am 77. I do have arthritis in left foot that requires prednisone shot every 3 months and my right knee is very arthritic. Also requires prednisone every 6 months or so and the gel annually. So, those also need to be in line (those joints) for me to even try to exercise. Pretty much reluctant to do any thing. JUST starting the taper this week from 10 mg to 9 mg. We will check in weekly to see when/if I can reduce further but week by week check in with my doctor. Thanks for all the good sharing here.

I had my first occurrence of PMR in 2008, which was thirteen years ago. It resolved the same year and I was pain free for thirteen years when I had a recurrence after receiving the Pfizer vaccine for Covid.

I am really sorry to hear that. Mine came back after the second Moderna shot. I’m still going to get the booster, when offered, because I’m hoping that being already on prednisone will blunt the reaction. That’s just hope, not medical expertise.