1. < Polymyalgia Rheumatica (PMR)

Tapering pain

Posted by farnhamlaf1 @farnhamlaf1, May 5 9:45am

I’m down to 10 mg and I’ve had shoulder and neck pain slowly progressing to lower back pain almost to the level of where I first started on prednisone at 30 mg anyone else do I grin and bear 10 mg or do I go back up?

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farnhamlaf1 | @farnhamlaf1 | May 7 9:48am

Decided to try 5mg in am an 5 mg at nite. Also taking Tylenol in am (1)
What does Actemra do?
Seeing my Rumy tomorrow an want to ask about that

REPLY
pbhorton | @pbhorton | 2 days ago
In reply to @dadcue "Your symptoms sound more like what I experienced when I tapered down to 7 mg. The..." + (show)
@dadcue

Your symptoms sound more like what I experienced when I tapered down to 7 mg. The intense fatigue, dizziness and other symptoms that were not previously present all sound very familiar to me. An endocrinologist said my symptoms were consistent with adrenal insufficiency from long term Prednisone use.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10257969/
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Unfortunately, the way to get over this hump is to resist the urge to increase your Prednisone dose. An endocrinologist was more helpful to me than my rheumatologist. However, my rheumatologist provided me with another medication that kept PMR in check while my Prednisone dose was reduced. The other medication didn't suppress my adrenal function.

It was still a long process to taper off Prednisone. After I tapered to a low dose of Prednisone, I needed to stay on 3 mg of Prednisone for more than 6 months. That amount of time was necessary for me to overcome adrenal insufficiency. The amount of time needed is dependent on many factors and varies from person to person. However, the goal for me was not to increase my Prednisone dose unless it was absolutely necessary. Easier said that done!

The newer medication didn't suppress my adrenal function while keeping PMR controlled. Staying on 3 mg of prednisone replaced the shortfall of cortisol. When my adrenals were able to produce more cortisol and my cortisol level improved, it was easy to discontinue Prednisone but not until that happened. My adrenals needed time and time was possible as long as I stayed on the other medication that controlled PMR.

Jump to this post

I am trying to learn about tapering. Can I ask the name of the other medication that you used that did not suppress your adrenal function and still kept your PMR in check? Thanks

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1 reply
farnhamlaf1 | @farnhamlaf1 | 2 days ago

I went from 10 to 7.5 prednisone with Methotrexate added every Monday 15mg.
Now I’m at 5mg pred with 20mg MTX.
Kinda sore a stiff day 3. But not turning back. MTX needs a while to kick in

REPLY
Mike | @dadcue | 2 days ago
In reply to @pbhorton "I am trying to learn about tapering. Can I ask the name of the other medication..." + (show)
@pbhorton

I am trying to learn about tapering. Can I ask the name of the other medication that you used that did not suppress your adrenal function and still kept your PMR in check? Thanks

Jump to this post

There are many approaches for tapering off Prednisone. Learning which approach works the best for every person is difficult.

I often don't say what medication unless someone wants to know. The medication that worked for me might not work for everyone. I was on Prednisone for 12 years before I found something that worked for me. It wasn't like I was a fast learner in terms of knowing how to taper off Prednisone. There is no single best way to taper off prednisone that will work for everyone.

Much of what I learned only happened after my rheumatologist offered the new medication to me 6 years ago. I have been off Prednisone for almost 5 years. I'm still being treated but not with Prednisone anymore.

My rheumatologist wanted me to try Actemra (tocilizumab). The main drawback is the cost. I currently do an IV infusion every 4 weeks. I'm very fortunate that it doesn't cost me anything.
https://www.ajmc.com/view/tocilizumab-leads-to-improvement-in-patients-with-active-polymyalgia-rheumatica-despite-prednisone-therapy

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2 replies
aussiedogmom | @aussiedogmom | 2 days ago

After we added Kevzara, I was able reduce my Prednisone tho it wasn't easy, and I'm still on 3 mg a day. For now, I'm leaving it there. The Kevzara is a godsend.

REPLY
randersonccc | @randersonccc | 1 day ago
In reply to @dadcue "There are many approaches for tapering off Prednisone. Learning which approach works the best for every..." + (show)
@dadcue

There are many approaches for tapering off Prednisone. Learning which approach works the best for every person is difficult.

I often don't say what medication unless someone wants to know. The medication that worked for me might not work for everyone. I was on Prednisone for 12 years before I found something that worked for me. It wasn't like I was a fast learner in terms of knowing how to taper off Prednisone. There is no single best way to taper off prednisone that will work for everyone.

Much of what I learned only happened after my rheumatologist offered the new medication to me 6 years ago. I have been off Prednisone for almost 5 years. I'm still being treated but not with Prednisone anymore.

My rheumatologist wanted me to try Actemra (tocilizumab). The main drawback is the cost. I currently do an IV infusion every 4 weeks. I'm very fortunate that it doesn't cost me anything.
https://www.ajmc.com/view/tocilizumab-leads-to-improvement-in-patients-with-active-polymyalgia-rheumatica-despite-prednisone-therapy

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I started Actemra 2 months ago. So far so good and am holding at 3 mg of prednisone without having to adjust upward occasionally. I’m told by doc that it takes about 3 months to get the effects of the drug known. I do have less temporal headaches already. 👍🏻🤞🏻

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1 reply
Mike | @dadcue | 23 hours ago
In reply to @randersonccc "I started Actemra 2 months ago. So far so good and am holding at 3 mg..." + (show)
@randersonccc

I started Actemra 2 months ago. So far so good and am holding at 3 mg of prednisone without having to adjust upward occasionally. I’m told by doc that it takes about 3 months to get the effects of the drug known. I do have less temporal headaches already. 👍🏻🤞🏻

Jump to this post

Generally speaking you need to give any biologic 3 months to see if it works. The effects aren't immediate. Tapering off Prednisone also causes pain so it is hard to know what is happening.

I had to stay on 3 mg of Prednisone for 6 months waiting for my cortisol level to improve. That amount of time had nothing to do with Actemra effects. Actemra was keeping my symptoms in check while my adrenals were recovering from long term Prednisone use.

Prednisone had 12 years to work. I had relapse after relapse whenever I tried to taper off Prednisone. My only regret after starting Actemra was that I wish Actemra was tried sooner.

It is somewhat disappointing that I haven't been able to discontinue Actemra yet. I'm still doing a monthly infusion of Actemra. My quality of life is much improved compared to my 12 years on Prednisone. I'm still not cured of my autoimmune problems but I no longer have to cope with all the Prednisone side effects.

REPLY
pbhorton | @pbhorton | 11 hours ago
In reply to @dadcue "There are many approaches for tapering off Prednisone. Learning which approach works the best for every..." + (show)
@dadcue

There are many approaches for tapering off Prednisone. Learning which approach works the best for every person is difficult.

I often don't say what medication unless someone wants to know. The medication that worked for me might not work for everyone. I was on Prednisone for 12 years before I found something that worked for me. It wasn't like I was a fast learner in terms of knowing how to taper off Prednisone. There is no single best way to taper off prednisone that will work for everyone.

Much of what I learned only happened after my rheumatologist offered the new medication to me 6 years ago. I have been off Prednisone for almost 5 years. I'm still being treated but not with Prednisone anymore.

My rheumatologist wanted me to try Actemra (tocilizumab). The main drawback is the cost. I currently do an IV infusion every 4 weeks. I'm very fortunate that it doesn't cost me anything.
https://www.ajmc.com/view/tocilizumab-leads-to-improvement-in-patients-with-active-polymyalgia-rheumatica-despite-prednisone-therapy

Jump to this post

Thank you Mike. I was just diagnosed with PMR in May. I have learned a lot from your well explained posts in this Mayo support group! Thank you for taking the time to help us all learn.

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