How long has PMR lasted - I'm trying to find the average

Too often, the side effects called "rare" are only listed as that because they are rarely reported. When a side effect isn't identified in the original trials, it isn't originally listed as a side effect. That means it's often dismissed as being connected by both patients and doctors when it occurs, as it is not listed, so it's rarely reported as a side effect.

I also object to the medical practice of using the term "side effect". A harmful effect of a drug is not a side effect, it's a direct harm.

I really do not know. My skin may have thinned. I have posted previously about studies of arthritis patients who have taken prednisone for years and if it is under 5 mg per day there was not any serious problems. This was for years.

My PCP diagnosed my PMR 3 years ago telling me I would only be on it a month! She started me on 20 mg prednisone then dropped to 15 mg after a month. It worked quite well but I have never been able to taper below 10 mg without a flare. I am starting Kevzara now hoping it will help me taper. I chose it over Actemra because I can inject it bi-monthly and not drive 88 miles for a monthly injection. The benefit of getting off prednisone outweighs the risk for me. I see my rheumatologist every 90 days. He is the best!

I have read that the average is 3 years and it does go away.

I have been tapering from 20mg since my initial diagnosis in July. I have just dropped to 5mg but unfortunately my symptoms are returning. I have been splitting my dose 1/2 mid day and 1/2 night. I was getting no relief when I took it in the morning and only saw positive results when I switched to taking it at night. I had no trouble sleeping. Now I'm wondering if I should try switching the time again since I read on this forum that morning is the best time as it mimics the body's natural cortisol rhythms. I'm also wondering if Kevzara might be in my future. Am I correct that you still take predisone while on Kezvara but can taper more quickly. What is the typical dosage of predisone when first starting Kezvara?

No good at all.
That's a quick drop from 20mg down to 5mg in only five months. I started prednisolone two months earlier than you and am only down to 6.5mg so far, following the recommended reduction schedule. From what I see on this forum, the thing most likely to bring on a flare is reducing too quickly or by too much at a time. Reduce by no more than 10% of the dose each time is a warning often given. Were you just reducing too quickly do you think?

I don’t know if that was the cause of the flair but my rheumatologist wants me to get labs done before I go back to 7.5
My tablets are 2.5 so it’s difficult to cut the dosage. I guess I can get another prescription of 1 mg. I’ll talk to my dr about a slower taper. Thanks. Still wondering what the management of prednisone is when on Kezvara.

If you went straight from 7.5mg a day to 5mg I would think a flare was inevitable. That's way too much of a drop at once when you're below 10mg. I would definitely get a script for 1mg tablets.

I have not had any guidance for reducing prednisone while taking Kevzara. I do know you slowly taper off prednisone and the Kevzara may reduce pain while tapering. I believe it works differently for each person and may take a few months to help. Others say they get pain relief from the first dose. I plan starting it soon after a couple of procedures. Your taper is so fast I am not surprised you have had difficulty. I have so much osteo arthritis pain in winter it is hard to tell what is PMR and what is arthritis. Hoping we all are pain free sooner than later.

I have tapered off prednisone when on Actemra ... not Kevzara.

Kevzara works on the same inflammation pathway as Actemra so these two biologics should work approximately the same way.

Every person is different so I can't say every person will respond the same way to treatment with either Kevzara or Actemra..

When I tapered off prednisone while taking Actemra --- I tapered by 1 mg per month for the first 3 months. I was starting from 10 mg of prednisone so it took 3 months to get to 7 mg.

I was surprised by not having my PMR symptoms return because 7 mg of prednisone was where I usually had problems. I "believed" Actemra was helping PMR but I didn't know for sure. I wanted to put my belief to a test so I started to taper by 1 mg per week. In 4 weeks I went from 7 mg to 3 mg.

I was in "uncharted waters" when I was able to stay on 3 mg of prednisone. I had pain but I didn't think it was PMR pain. I attributed the pain to arthritis.

On 3 mg of prednisone, I didn't feel well. I was dizzy whenever I stood up too rapidly. My blood pressure was low so some of my blood pressure medications were stopped by my primary care doctor.

I asked my rheumatologist what to do and explained to him how I felt. I didn't think my symptoms were PMR symptoms. My rheumatologist checked my a.m. cortisol level when I was taking 3 mg of prednisone. My cortisol level was low so I was told to stay on 3 mg of prednisone until I could be seen by an endocrinologist.

When I saw an endocrinologist 3 months later, "technically" I was still taking 3 mg of prednisone. During the 3 months waiting for my endocrinology appointment I was "experimenting" with my prednisone dose. I don't recommend doing this. I did some fast tapers to zero and then back up to 3 mg just to see how I felt. I repeated this several times. I stayed close to 3 mg most of the time. I told the endocrinologist about doing these fast tapers and how I felt so I didn't keep it a secret.

My endocrinologist explained to me what "could happen" if I tapered off too soon. She reviewed my medical history and was amazed by how long I was on prednisone (12 years). My endocrinolgist rechecked my a.m. cortisol level at my first visit and verified that it was still low. I was told to stay on 3 mg with a followup visit scheduled 3 months later.

Three months later, my endocrinologist rechecked my a.m. cortisol level again. This time she thought my cortisol level was "adequate." I was instructed on what could happen when I discontinued prednisone. My endocrinologist said she didn't know what would happen. My endocrinologist thought it "might be okay" to discontinue prednisone and gave me a direct number to call her "if anything happened." She wanted to know about everything.

My endocrinologist said it would be okay to take prednisone again "if I felt the need." My endocrinologist said preferably I should call her before taking prednisone again but she didn't require that I call her first. She said she wanted to know about anything that happened when I stopped prednisone.

What happened after I stopped prednisone was completely unexpected. I needed 60 mg of prednisone again. My ophthalmologist prescribed prednisone for uveitis. It was a temporary setback while other things were tried. After about 4 more months I was off prednisone again.

I have successfully stayed off prednisone ever since except for when Actemra was stopped. I have taken Actemra for 4 years without any difficulty except for minor lab abnormalities. I had lab abnormalities on prednisone too.

I have a history of multiple autoimmune conditions including PMR. Actemra has kept everything in remission when I remain on Actemra. I don't know when or if Actemra will be stopped.

Sorry for the LONG story.