How to address PMR pain while decreasing prednisone

Thanks for your help John

I have a long rather complicated history with PMR. I am 85 now. I was on Prednisone for over two years and it did certainly help with the pain. In May of 2019 I had to go by ambulance into hospital where I had an emergency colonoscopy and came out of it with an ostomy for life and then developed further complications with infections and not healing. The doctors in the hospital were adamant that I get off the prednisone immediately. It was their opinion that the drug was hindering healing and that the reason my ostomy bag would not stick on my skin was from the affects of the prednisone. To shorten the story I was in the hospital for five months, during that time I was completely taken off prednisone. I noticed after I came home (Nov,/1019) that I was having a lot more joint pain and when it hit my shoulders I realized that it was the result of my PMR without Prednisone. I am really afraid of starting to take it again after the reaction of the hospital doctors but my pain is quite severe. Does anyone have any thoughts on this?

Hello @bcstew, Welcome to Mayo Clinic Connect. I'm sorry to hear about your complications using prednisone. Having 2 occurrences of PMR I can understand the need for relief from the pain. Have you discussed the complication with using prednisone with your rheumatologist? I'm wondering if they may have an alternative.

No, I spoke to my GP and she said that other than painkillers like Tylenol with Codeine, Prednisone was the only thing would help.

@bcstew - I'm no medical expert and have no training but a rheumatogist is the specialist when it comes to PMR and similar conditions. If it were me, I would want to see the specialist or at least get a second opinion. Here's some information that may be helpful.

Any alternatives for Prednisone -- https://www.hopkinsarthritis.org/ask-the-expert/any-alternatives-for-prednisone/

Hello again, John...I’ve had PMR now for 1.5 yrs and am still on Prednisone...down to 4 mgms ...went down too quickly and PMR returned. Could you please tell me if PMR is a compromised autoimmune disease. Now that the new COVID-19 VIRUS has arrived, do you know if people who have this are being told to stay at home? Especially if they are over 70, which I am! Once again, I thank you for any advice you can give me.

Hi @dreamer38, I'm 76 and even though my PMR is in remission I have the same concerns as yourself and other members of our age group. I think it's prudent for us elderly folks to take extra care of ourselves. We have a new health group on Connect to help members get through the COVID-19 pandemic with many discussions to answer your questions, as well as share with and support other Connect members. If you don't find a discussion that answers your questions, please feel free to start a new discussion. Here is a link to the new COVID-19 health group and a list of the discussions in the group:
https://connect.mayoclinic.org/group/covid-19/

Thanks so much, John. Since writing the above, I now have PMR in my hands and wrists. Rheumy put me back up to 20 mg from 2 mg, but just for a week!! Pain is much better. Apparently, with Pred this high, one cannot venture outside during COVID-19.

I was on Pred for two years, dosage up and down several times. I kept trying to lower it but pain was too severe. Last year I ended up in the E.R. with bowel problems. I came out of it with a colostomy followed by several unexpected complications which led to more gastric/bowel surgery. Long/Short I was in hospital for 5 Months. Wounds would not heal and in that 5 months I saw many, many doctors. The one thing they all agreed on was that I must get OFF the Pred. at once. It had suppressed my immune system to the point where the wounds couldn't heal and were the cause of several different infections. I am home now and take zero Pred. Yes, I have a lot of pain but from what I learned the damage that it does to us makes it dangerous for seniors (I am 85) re the COVID problem and any other medical problems that might occur. I hope this first hand account will be of some help to you.

Sorry to hear about all the difficulties you have had bcstew. It certainly will be of help to others to realise what prednisone can do without a person realising and not get complacent and encourage us to put up with a bit more in attempt to wean off it. Thanks for the reminder.