PMR Anyone?

Hi @susieflamilngo I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to the discussion John mentioned so that you can meet others with PMR. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be frustrating to have such an awful side effect. I wanted to tag fellow Connect members @becsbuddy @beryl and @rachelp as they have experience with PMR and may be able to offer you support.

Back to you @susieflamilngo I wanted to repeat John's question. What tapering schedule have you tried?

Thank you for reply. I started at 20 ml predinone and slowly
Tapered for a year to 3 mg.
I did not have a formal schedule
And maybe that was part of my headache problem. I remember going down very slowly. My
A1-C and Sed are now normal and I hav never had the terrible pain of many in this group. I just wonder if the two drugs
Mentioned above are overkill for present condition.? They both have potential bad side affects.
Leflunomide OR Methotrexate are the strong drugs being considered by my arthritis md to
Gradually taper from the prednisone currently at 6 mg.

Hi @susieflamilngo -- Have you discussed the use of Leflunomide and Methotrexate along with prednisone with your doctor or rheumatologist? I have only used prednisone for my PMR. I would also ask them if they have a tapering schedule that they can recommend. Since we are all different in the way the the PMR affects us I don't think any tapering schedule is something that is cast in stone. I think you have to work with your doctor to find something that works for you. The first time around when I was on prednisone for 3 years, the last 6 months was spent going back and forth between 1 mg and 1/2 mg dosage. At first I was tapering down on a weekly basis and then tried on an every 3 days basis. The main thing I would do is keep a calendar/log of the dosage and a number on the pain scale of how you feel when you change the dosage.

John

Hi Jan @olegraymare, Just checking in with you to see how you are doing with your polymyalgia rheumatica (PMR). Is your PMR still active? Just wondering if some of the pain has gotten better or if you've found some other tips that help you.

Hoping you are having a pain free day - John

Thank you for your concern. I just had another follow up with my rheumatologist today as a matter of fact! My blood work shows all is well, inflammation levels are normal. I’m down to taking 7 mg a day of prednisone. My rheumatologist wants to put me on bone density type drugs as I already have been diagnosed with having osteoporosis. He’s worried that the steroids will impact me significantly as history shows it’s a “bone killer”. I’ve resisted taking these bisphosphates and take vitamins algaecal that have history had shown to improve results. I walk everyday and lift weights. I’m scheduled for a bone Denistry test this Friday to compare.
Do you have any thoughts or ideas concerning this?? P.s I do not have any pain dealing with pmr.

Hi Jan @janetlynn, Welcome to Connect. I had a bone density test when I had my last occurrence of PMR in 2016. My primary care doc wanted me to go on 1200 mg daily of calcium as I have osteopenia. I tried it for about a week but it was really constipating so I told him I would work on adding natural food high in calcium to my diet. I like broccoli and I'm learning to like kale 🙁 which I add to my salads at lunch and top with chia seeds. I also have found some chocolate calcium chews that don't seem to plug up like the tablets. I tend to be like you with not wanting to take any medications that I can avoid if there is a healthy alternative and I can get a little buy in from my doctor. We will see when I have my next bone density scan.

You are doing all the right things - exercise and walking are good to keep the muscles working. I have a trouble with the walking due to my lower back pain but I try to ride my recumbent exercise bike every day for at least 15 minutes or longer. Can you let us know how your bone density test goes?

Yes! I will keep you posted! I too, try to incorporate kale, chia seeds into smoothies. Thank you again.

I probably need to get back to having my breakfast green smoothies ☺ I was hooked on them after reading Dr. Terry Wahls story and getting her book the Wahls Protocol which has some good smoothie recipes in it -- https://terrywahls.com/about/about-terry-wahls/

@janetlynn I will be interested in hearing your bone density test results. A couple of months ago I had mine done and it should my bones are getting thinner so started on a bone growth . I told the Dr. I wouldn't take any of the perscribed meds she was o.k. with that .

Hi @charlena, There is another active discussion for PMR where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Autoimmune Diseases > PMR Anyone?
-- https://connect.mayoclinic.org/discussion/pmr-anyone/

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to get off and I was tapering slowly. The last six months I was going back and forth between 1 mg and 1/2 mg tablet until I was finally able to get off and only had a few minor aches but no real pain. I found it really helpful to get my rheumatologist to prescribe 1 mg tablets along with my others so I could go down more slowly. I eventually had to split the 1 mg tablet which was how I was able to taper off the first time.

Is your husband trying to taper from 5 mg to being off?