New member with PMR

Welcome Terri @rocksology, You are not alone and from reading your story I'm thinking you may have a leg up on where most of us have started with this PMR game because you are your own advocate which is a big plus.

There are a lot of great discussions started by other members here in the PMR group that will help you get a jump start in learning more and hopefully provide some encouragement. Here are a few of them that I have found helpful:

-- Comprehensive Overview Of PMR:
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
-- History of PMR:
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
One thing that helped me was keeping a daily log of my level of pain in the mornings and my dose of prednisone. Do you keep a log?

Hi Terri, I was diagnosed in Dec 2024 and started out at 10mg prednisone. I am tapering 1 mg every four weeks. I have some pain but so far not unbearable. I’m almost ready to reduce another 1 mg and just keeping my fingers crossed. Trying to stick with anti inflammatory diet and daily walks. By the way, my PCP is months out for appointments so I was seen by her assistant who diagnosed me and wrote the prescription. My PCP was given the info and sent me a brief email with no further info. Seems this is the state of healthcare these days. Good luck..I’m in Portland!

Hello Terri and welcome. I was diagnosed with GCA and PMR in late June 2024, so I'm familiar with both of those conditions. I started at 60 mg per day of prednisone, and I've tapered down to 6. I also taking Actemra injections weekly.

Has the prednisone taken care of your pain and stiffness? 4 months seems like a reasonable amount of time to get down to 10 mg. I would think you could taper in steps of 2.5 mg per month, and once you get down to 10, stay there until your appointment. Just see how you feel and if the pain comes back, go back to the previous dose and then start tapering at a smaller decrease.

Assuming you don't already have bone density issues, a standard piece of advice for anyone taking prednisone for an extended period of time is to take calcium and vitamin D supplements. I take a pill that combines both along with vitamins K2 and B12.

Also, take the prednisone as early in the day as possible along with food. I have to take a PPI, pantoprazole, to control digestive tract irritation. If you have problems you might need one too. Some people end up splitting their dose to get through the whole day better, but you can see how you do first with a single dose in the morning.

Are you having any problems with insomnia? I had a lot of trouble, but it went away once I got down below 40 mg per day. Hopefully you won't have that problem, but lots of people do.

Feel free to ask questions! I know I felt very much at sea when I was first diagnosed.

Hi Terri. I’m in Central Oregon and have been diagnosed with PMR since 8/24, currently on only Prednisone, tapering incrementally 20mg to 9.5. I am very happy with my rheumatologist, Dr. Kahr, who is in Bend, OR. Good luck

Sounds like a good plan your doctor gave you for your prednisone. If you get a flare somewhere along the way you can increase your prednisone and then taper down with the same plan. It will take 6 months or a year quite possibly. So be patient and learn all you can from various posts on this blog. I started at 15 and have now tapered down to 4 using the same plan as yours. I did have a flare at 5 once before and went back up to 8 though I could have gone back to 10. It takes time.

Hi Terri, I have been off prednisone for about 6 months but it took over two years to get there. I starts at 20mg for two weeks, then 15 for two weeks, then 10mg. Then I did the 1mg reduction every 4 weeks until I got stuck around 4-5 mg (which seems to be a common spot to get stuck). I would usually have a little discomfort for a few days when I did my reductions but if it lasted two weeks, I increased and stayed at that level until I was pain free +2-4 weeks before trying again. Eventually I got there! At the very end I was on 1 mg for months and then forgot to take my pill one day and it was ok!

What city are you located in Oregon? I will try to help you find someone the best I can. Also, Mayo Clinic has support groups online for PMR. Maybe you can ask about a Rheumatologist in the area where you live. I'm on the east coast, but you need to have a Rheumatologist not a Primary Care Doctor. I would definitely go for a second opinion on a new Rheumatologist. Ok, this is how it goes. To get better, this is not a race, it's a journey. You may find that once you start come down off the Prednisone, you will start experiencing bouts of pain. Do not get discouraged. Although they do not recommend to take Advil (my doctor said it was okay as long as I didn't overdue it), so I took 1 Advil Gel for 1 or 2 days and I felt a hundred percent better in an hour. Then I was able to taper down without too much pain. To be blunt the PCP was incorrect in telling you to come off the Prednisone fast. When you get down between 15 to 10 mg you may start to feeling your PMR symptoms coming back. When that happens, I would start going down only by 1 or 2 mg with each taper. This was my taper: 20 mg to 17.5 to 15 to 12.5 to 10 (at this point you may start experiencing pain; ask you doctor about taking 1 Advil Gel) to 7.5 to 5 to 4 to 3 to 2 to 1 mg. You can also come down by taking the old dose and the new dose every other day, for example: Your taking 5 mg and going down to 4 mg. You can take 5 mg one day and the next take 4 mg, and the next day take 5 mg and the next day take 4 mg, etc. etc. Then do this with each lower dose. This will help you come down off it slowly, and hopefully you will be Prednisone free. I hope this helps!

Lots of good experience to work with. It would be
helpful to get into the rheumatologist in Bend if you can wait several months and travel. After initial consultation
telemedicine is legal in most states.
Sometimes their offices will suggest getting your lab
records in advance of your visit to review and repeat.
Prevention of side effects is a good plan to work on.
Home blood pressure checks and a glucose meter are
simple at intervals. Ask your PCP to address your
increased risk of cardiovascular disease with appropriate preventive care. I asked for a baseline Dexascan and saw my eye doctor as well. Check out
the Mediterranean diet plan to help with chronic systemic inflammation. You have a good start by being
an informed self advocate.

Hi Terri you rock being firm with your Doc and getting what you need!! Prednisone is a wonder drug and a problem drug with side effects! I was thrown into diabetes so couldn’t wait to get off it! It took about a year SLOWLY going down 1mg every 2weeks at about 5 mg pain starting again from PMR but I persisted and even though I am having pain am off Pred and diabetes meds. 3different scripts of NSAIDS not helping looking into Kevzara.
If you have a Hospital near you maybe they can help you with finding a Rheumatologist?!
Good luck and congrats on your sobriety!

Similar to my experience. Started at 10, reduced 1 mg until 5 mg. Then .5 until zero ( to approximate 10%/month). Only flares at 1.5 mg, but manageable. Off for 2 months now with no flares. Good luck!