Does PMR go away permanently?

I have been on prednisone 9 weeks and am having a very rough time. Fast taper every two days, 40mg to 30mg to 20mg to 17.5 to 15 to tryfor for 2weeks but bottomed out at about 10 days and had to go back to 20mg. Did that for 2 weeks now at 17.5 for another week. I want to get off this horrendous roller-coaster. Speaking with my rhuemy later in the day, will discuss including a biological or a slower taper to 17 mg next week. I'm just not doing well with this whole prednisone ride. I feel like I've been awake for 6 months with strobe lights shining in my eyes and open electrical cords through my whole body. I'm scared and tired and angry and sad and at a loss

@carolneedham

I understand those feelings. Rather than a roller-coaster ride my rheumatologist recommended a "stable Prednisone dose" that worked. I hated the roller coaster but I got used to the stable ride on a stable dose of Prednisone.

Twelve years later was when I got off Prednisone after a biologic was tried. It took me another year to taper off Prednisone after the biologic was started. My biggest regret was not starting the biologic sooner, That would have spared me a lot of prednisone and countless relapses. A slower taper ended in a relapse too and prolonged the time I took prednisone.

I remember someone telling me Actemra (tocilizumab) was "nothing more than an expensive steroid sparing medication and taking Prednisone would be better and less expensive." I would recommend trying the biologic to see if it works or not, It might not work completely but it should decrease the need for so much Prednisone. I was lucky and haven't needed any Prednisone for 6 years.

@dadcue , thank you! Definitely the direction I want to go in.

@carolneedham I agree with dadcue. You need to find your lowest possible dose. I suspect that is what your Dr. is trying to do. Prednisone is a nasty long term drug but it works at the right dosage. If I understand , only being on for 9 weeks is usually not enough time for PMR . I was on for 6 months and felt lucky the PMR went into remission. Find a LPD then maybe switch to a biologic for longer term use.

@tuckerp
what is a biologic?

@pawprintpeg "Biologic medications are complex, high-precision drugs manufactured in living cells rather than synthesized from chemicals. They work by targeting specific proteins or immune system cells to treat conditions like autoimmune diseases, severe asthma, and cancer. Because of their size and complexity, they are administered via injection or infusion." Drugs like Actemra and Kevzara seem to be most popular for PMR.

Hello everyone, I’m relatively new to this group but it has helped me a lot. I am 70, diagnosed with PMR a year ago. I took a slow taper of Prednisone (1 mg every 4 weeks) which worked fine until I went from 4 to 3mg and my PMR flared. I’m stable now at 5mg. Before all of this, I was diagnosed with osteoporosis and decided to take a Reclast infusion as treatment. My PMR started within days and I believe it was triggered by the Reclast. Has anyone else had this experience. Now, even though I am at risk, I am very reluctant to start another osteoporosis medication.
Also, I am reading about these biologic medications. My doctor has not suggested I take these yet however, I am trying to learn more about it. My first concern is always the side effects. Can anyone share with me any side effects you have experienced while taking a biologic? I appreciate your input, sorry about the long comment.

@ggep

Welcome to the best PMR forum. You will read positive reports from actual people who have tried biologics. Some people have negative stories but they are welcome to share those stories too. I was on another forum where you could not say anything negative about Prednisone or anything positive about a biologic.

My personal experience with a biologic has been positive but I like it when other people share their personal experience.
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As for treating PMR, first you get diagnosed with PMR and start Prednisone. Your symptoms are relieved but then you attempt to taper off Prednisone. That is when many people have a relapse of PMR. Before long you are on "long term" Prednisone with all the inherent side effects of long term Prednisone use.

Almost anything can trigger a PMR relapse so it wouldn't surprise me if reclast did. While it is rare, some people report muscle or joint aches shortly after an infusion of reclast. It is possible these pains can mimic a PMR relapse. It is impossible to know why people relapse or whether or not it is truly a PMR relapse. There are many conditions that mimic PMR symptoms including prednisone withdrawal syndrome. Now you at a different stage known as "relapsing PMR."
https://connect.mayoclinic.org/discussion/i-keep-relapsing-when-i-try-to-get-off-prednisone/
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You really should be treated for osteoporosis because it is often an irreversible side effect of long term prednisone use. So now you are in a quandary but most medical professionals would say the risks of side effects from a biologic are less than the risks from long term Prednisone. Your doctor might want to try a conventional steroid sparing medication like methotrexate before jumping to the more expensive biologics.

@ggep
Like you, I was diagnosed with pmr right before I turned 70.
I'm now 77. I had osteopenia at the start which worsened a little and have had 2 Reclast infusions with no side effects. Since then my bone density has improved. I take 2000 IU of vitamin D3 and get my calcium through diet ( not supplements) under Dr supervision.
I am at 2mg prednisone and recently had great difficulty going from 3 to 2 mg. So I am staying at 2mg til I see the rheumatologist in August.

@ggep welcome to the group.
First off , do a search of Kevzara on this site and you will find more information than you ever need. You can also search the site for osteoporosis.
Short story you can see on this thread and me too that wish we started Kevzara sooner. It helps us get OFF PREDNISONE. Talk to your Dr.
For me, no side effects, off prednisone within 3 months of starting Kevzara. Remind yourself to be pain free for a couple of weeks at least before a tapper.
I’m 80yo female. Yes, have osteoporosis, but only in one place. Not treating the osteoporosis.