How does your pain come back when decreasing dosage?

@csimmonds

Interesting that you started at 30mg in March and now you are already down to 3mg , as my rheumatologist started me at 15mg one month ago and now has started to taper me off as I am responding well to the treatment.

I am now at 14mg but he is only tapering me at 1mg less each month, insisting that this is the proper protocol.

Thus, 15 months cure if all goes well.

And he said that 15mg was the maximum that one should be prescribed for PMR.

I am based in Belgium.

@visnu

Your rheumatologist isn't wrong about what he says. There is nothing wrong about the protocol. It more closely represents the "textbook protocol" for how to treat PMR. However, there isn't a single best way to treat PMR and not everyone has a textbook case of PMR.

Likewise, the duration of PMR varies widely. Sometimes "remission" can be achieved in a few months and sometimes remission can take years. It isn't correct to say that prednisone "cures PMR." Prednisone does not cure PMR, but it helps to relieve the painful symptoms until PMR goes into remission.

After PMR goes into remission then we slowly taper our Prednisone dose lower until we reach the "lowest effective dose of prednisone." The lowest effective dose also widely varies and depends on many variables.

Whenever my prednisone dose got too low, there was always the danger of a relapse. Relapsing PMR was why I needed to take Prednisone for more than 12 years. My relapses had nothing to do with how I tapered my prednisone dose. There isn't one single best way that any research says is superior to all the other ways of tapering off prednisone. Anyone who claims to know the "best way to taper off prednisone" is deceiving you. However, the general rule is to taper off "slowly" which conflicts with the general rule to taper off Prednisone "as soon as possible."

In the USA, relapsing PMR is now being treated more often with a biologic called Kevzara (sarilumab) which is a monoclonal antibody medication used to treat moderate to severe polymyalgia rheumatica (PMR). It works by blocking interleukin-6 (IL-6), a cytokine that plays a role in inflammation.

For GCA, a different biologic called Actemra tocilizumab) is frequently used. The biologic Actemra (tocilizumab) is frequently used and is the first FDA-approved treatment for adults with giant cell arteritis (GCA). Actemra also blocks the IL-6 cytokine which is implicated in both PMR and GCA.

Doctors in the USA have the belief that the risks of "long-term" prednisone use outweigh the "short-term" benefits of prednisone. I think European doctors also believe this to be true. This is why all doctors universally want us off prednisone as soon as possible.

Fortunately there is research being done to enable us to get off Prednisone faster. There are other biologic treatments for PMR/GCA that are being researched. It only took me a year to taper off Prednisone after Actemra was tried. There weren't many options except for Prednisone when I was diagnosed with PMR nineteen years ago. Better options are currently available.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr

@dadcue Ike, what is considered long term use of prednisone?

@susanalka

Long term use of Prednisone isn't well defined. Artificial intelligence says the following:

"While there is no single official definition, prednisone use for over 30 days is generally considered long-term. Other definitions use a threshold of longer than 3 weeks (21 days). The classification of "long-term" is primarily based on the duration over which significant side effects, such as adrenal gland suppression and an increased risk of infections, osteoporosis, and diabetes, become a concern."
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When Prednisone is used to treat PMR ... "long term" might be more than a year. In theory, PMR only lasts a year or two and "burns itself out." I think the time-frames for treating PMR are purposely vague because there aren't any precise answers. However, my prednisone side effects happened after my first dose.

I was treated with Prednisone for 12 years. I can't say PMR ever burned itself out. I had countless relapses no matter how slowly I tapered. The only thing a slow taper did for me was to keep me on Prednisone longer. There weren't many other options other than prednisone that were available when I was diagnosed.

When Actemra was tried, I tapered off Prednisone in about a year. Actemra actually keeps PMR in remission and has kept me off Prednisone for 5 years.

@susanalka

Long term use of Prednisone isn't well defined. Artificial intelligence says the following:

"While there is no single official definition, prednisone use for over 30 days is generally considered long-term. Other definitions use a threshold of longer than 3 weeks (21 days). The classification of "long-term" is primarily based on the duration over which significant side effects, such as adrenal gland suppression and an increased risk of infections, osteoporosis, and diabetes, become a concern."
----------------------------
When Prednisone is used to treat PMR ... "long term" might be more than a year. In theory, PMR only lasts a year or two and "burns itself out." I think the time-frames for treating PMR are purposely vague because there aren't any precise answers. However, my prednisone side effects happened after my first dose.

I was treated with Prednisone for 12 years. I can't say PMR ever burned itself out. I had countless relapses no matter how slowly I tapered. The only thing a slow taper did for me was to keep me on Prednisone longer. There weren't many other options other than prednisone that were available when I was diagnosed.

When Actemra was tried, I tapered off Prednisone in about a year. Actemra actually keeps PMR in remission and has kept me off Prednisone for 5 years.

@dadcue thanks, Mike. Great info. My PCP has never suggested Actemra or any other option for me. I’m at 2.5, down from 20mg in Dec ‘24. I saw her in June for a physical and the taper schedule seemed fine. Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and asking how I’m doing.

@dadcue thanks, Mike. Great info. My PCP has never suggested Actemra or any other option for me. I’m at 2.5, down from 20mg in Dec ‘24. I saw her in June for a physical and the taper schedule seemed fine. Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and asking how I’m doing.

@susanalka

"Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and asking how I’m doing."
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Some people interpret this to mean that their doctor would like for them to taper off Prednisone faster. My rheumatologist "encouraged" me and offered "suggestions" that might help me get off Prednisone sooner. I interpreted the encouragement and the suggestions were because of her concern for my overall health and well being.

You are doing great to have tapered down from 20 mg to be at 2.5 mg in less than a year. I hope you don't have a relapse. I think most rheumatologists will only consider a biologic after you experience a relapse. Biologics like Actemra are currently being used for "relapsing PMR" or "refractory PMR."

There are several biologics available now but more options might be available in the future.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr.

@susanalka
As for biologic, my Rehumy put me on KevzaRa to help me get off prednisone. So far a success. 35 wks Kevzara