How to address PMR pain while decreasing prednisone

Had a slew of blood tests, waiting for results , doctor said symptoms are that of PMR. or could be LUPUS. Doctor is cautious of steroids because of my osteoporosis>>>
Also , does anyone experience a heaviness on chest , and always trying to catch a breath ???????

Well I have made it to 1mg of Prednisone from 20mg and feeling a little stiff in my shoulders but not too bad. Hopefully I can completely come off this after a month, can anyone tell me do you just drop to nothing from the 1mg or do you halve it or every other day take 1 mg? Also, I have put on quite a bit of weight especially around my middle, has anyone else had this and how long does it take to get rid of all the excess you have from being on Prednisone? Any information would be a help.

Hi @lindapc, my PMR is currently in remission but I started on 20 mg of prednisone both times. The first occurrence took me 3 years to taper off and the last 6 months or so was going between 1 mg and 1/2 mg until I was finally able to stop taking it with a minimum amount of discomfort. I used a pill cutter to split the 1 mg tablets. I gained a lot of weight the first time around. Not sure exactly how much but it was 50 lbs or more. The second time around I was more conscious of the problem of gaining weight and was able to keep it between 5 and 10 lbs. There are other sites with information on how to control the weight gain but here are a couple that do a good job of summarizing. Exercise really helps but I believe the key is to not overdo the exercise to where it causes your pain to be worse.

ILD Nutrition Manual: Prednisone and Weight Gain
-- https://www.ucsfhealth.org/education/ild_nutrition_manual/prednisone_and_weight_gain/
Why do people gain weight on Prednisone?
-- https://www.helpfightra.org/weight-gain-on-prednisone/

Here's some ideas to help with staying more active.

3 Strategies for Coping with Polymyalgia Rheumatica (PMR)
-- https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Hi@johnbishop thank you for your reply and information it was very helpful. The information was more on not gaining weight when on prednisone, can you tell me how long it took you to get rid of the excess weight you had gained and how you went about it. I have the moon face plus gained weight around 10kg, Does the moon face and middle weight go after you get off the prednisone or do you have to diet and excercise?

@lindapc, I think the moon face will go away once the prednisone dosage gets lower according to what I've read. I had to do some lifestyle changes to get rid of the extra weight I gained the first time my PMR occurred. I did do some dieting and exercising to lose the weight. I was also looking for answers for my small fiber peripheral neuropathy and had read a book by Dr. Terry Wahls - The Wahls Protocol. I used her basic diet and some of her smoothie recipes for my breakfast. I got to liking the green smoothies and will occasionally make one for my breakfast meal. She has a really inspiring story on her website here: https://terrywahls.com/about/about-terry-wahls/. I also joined Weight Watchers when I was struggling the most but finally realized that I had to make some lifestyle changes to control the weight and while Weight Watchers provided support and accountability I thought I could do it on my own for free if I made up my mind. I also purchased an inexpensive hybrid recumbent exercise bike elliptical combo and used it first thing each morning for about 30 minutes when I got up. It really helped loosen my legs and got me going in the mornings and it wasn't too strenuous.

@johnbishop - Thank you John I really appreciate your comments and information. I think for me that is the most depressing thing about Prednison, I can put up with a bit of pain from the condition but when you have a body affect from the prednisone you look at yourself and it does not make you feel good. I thought that only being on 1mg now that my face would go down, maybe when I loose the weight then my face will go back to hopefully normal. 🙂

You're doing great if you are down to 1 mg. Just keep working on it and take it one day at a time, one step at a time. When I get down I try think positive. There is a great site with some short videos to help you train your brain so to speak ☺
https://www.resilientoption.com/

I would like to ask a new question, I am down to 4 MG and normally try to go down by 1/2 mg every 3 weeks, however I am feeling slight pain when I bend down and walk up the stairs. Do you wait for most of the pain to go away or do you still drop down on the medication? I do not want to make things worse. I have stayed on the 4MG for 4 weeks now and really want to lower it. At what point do you know it is okay to lower the medication? Are you asking for trouble if you lower it if you are still feeling some pain/stiffness on the current level you are at or do you wait? I just do not want to do it too soon. Any suggestions? thanks!!

I had the same dilemma . I very slow tapered ,as you.
Had a little pain and stiffness that would crop up from time to time, but continued to taper. I am finally now off pred and if I'm a bit stiff, I'll take a celebrex or advil on occasion. Everyone seems to respond different.Best of luck to you.

@ambershe you are doing great. Like @kdmorris says everyone responds a little different to tapering off of prednisone. My first occurrence of PMR took 3 years to taper off. The last six months was going back and forth between 1 mg and 1/2 mg until I could stop taking it and only have a little pain and stiffness. I was tapering on a weekly basis. If it were me I would try going down 1/2 mg for 3 days to see how the pain level is. I think it helps to keep a tapering log for future reference. Good luck and don't give up!!