Off Prednisone but still feeling new type of pain

I was diagnosed with PMR almost a year ago. I have been tapering from 30mg of prednisone and am now at 3mg. I want to go to zero. Before Christmas my pain wan increasing and I was discouraged. I realized that some changes in my life might help. This included diet, exercise, and stressors. I stepped back from some of the responsibilities and commitments that caused stress. It was also a busy time of year. Most of these were volunteer tasks I could give up. I was surprised at how much it helped the pain. I think I was able to relax better and get more restorative sleep. I am now ready to continue my tapering to zero.

@csimmonds I JUST STARTED ON THIS SITE. I HAVE COME TO REALLIZE STRESS IS A MAJOR FACTOR FOR ME. I WAS DOWN TO 1MG.AND HAD A FAMILY ISSUE . I THAN GAT ANOTHER FLAIR. I WAS BACK UP TP 11MG. I AM NOW AT 5MG. HAD SOME STRESSERS AND PAIN DONOT KNOW MY COUNTS. WILL GO TO DR. APPT. SOON. TAKING TYLENOL HELPING TO CARE FOR MY GREAT GRAND CHILDREN WHILE MOM WORKS AT HOME. THANK YOU

Has anyone taken humira/or biosimilars to replace prednisone and if so what were the reactions/results. I feel for all of us with this strange disease that I had never heard of for 78 years until I was diagnosed.

@danboldman

I had tremendous results from Actemra (tocilizumab) which is FDA approved for GCA, The biosimilars of Actemra should also work well. I was able to get off prednisone after 12 years. I had what is called relapsing and refractory PMR along with some other autoimmune conditions.

"FDA-approved biosimilars, such as Avtozma (tocilizumab-anoh), Tofidence (tocilizumab-bavi), and Tyenne (tocilizumab-aazg), are approved for the same indications as Actemra, including Giant Cell Arteritis (GCA) and rheumatoid arthritis."

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Kevzara (sarilumab) is FDA approved for PMR and seems to work for many people based on what I read on this forum. I don't have any personal experience with Kevzara.

I was trialed on Humira. It might work for RA and other types of inflammatory arthritis but didn't work well for PMR in my personal experience. Research has shown TNF inhibitors don't work well for PMR/GCA. I wouldn't go so far as to say Humira won't work because it might work for some people.

@dahliamama yes. Stress is a huge trigger.

Yes, a couple of months after going off Prednisone, I started feeling achy and stiff, particularly in one knee. It was like Prednisone had made me feel young again, and now the aging process was reversing and I feel older than before I got PMR. Well, I AM older. The rheumatologist wanted to put me back on Prednisone, but I resisted. I'll give it a year, I thought. After a year, I've gotten slammed with a twisted bowel (cecal volvulus) which required emergency surgery and a long recovery. The doctors don't know why it happens and I don't think it is related to PMR, but that has knocked me off my horse and made me feel even older. So that may have hijacked my experiment. I do think there is a price to be paid for the benefits of Prednisone. I would not have done anything differently, but there is a price to be paid.

@lbk67 I am similar. I have been on prednisone for 14 months. Tapered down from 20mg to 2mg , then had a major flare. Now taking 4mg and better but worry every day about reoccurring pain.

@susanalka Good luck. The Alieve (sp?) seems to help - believe it or not. I worry too and just wonder how much worse this is going to get as I get older.

@54pontiac

"I would not have done anything differently, but there is a price to be paid."
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That pretty much sums it up for me too. The pain had a way of making me take prednisone. Now I do a monthly infusion of Actemra. With any luck, I won't have to take Prednisone again.

I worry that there might be a medical price to be paid for being on Actemra too. I'm fortunate that the dollar cost isn't that much for me.

@dadcue since going off prednisone 9 months ago I have since stopped taking LDN and hydroxychloroquine. Both were Prednisone sparing drugs. I decided to bite the bullet and see what happens.
I have virtually no pain and believe I should have done this years ago.
I am stronger now and able to work out at the gym almost as well as before PMR. The prednisone had weakened my muscles which was making recovery harder. The pain I was often feeling was actually my muscles screaming because they were so weak
These drugs make us too dependent

I am so happy I have my life back. I’m celebrating by planning lots of travel which I had stopped because I never felt healthy enough to leave home on a trip.
The money I am saving by not going to doctors and paying for meds and supplements will help make this possible too.