1. < Polymyalgia Rheumatica (PMR)

PMR - Decreased prednisone and pain returned

Posted by alan bruce @alanbruce, Dec 29, 2018

I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before... Any recommendation on what to increase the predisone to.

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susanew | @susanew | May 26 9:19am
In reply to @spmgka "@ekgilpin1 The blood tests will confirm it for you." + (show)
@spmgka

@ekgilpin1 The blood tests will confirm it for you.

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I have no blood test markers …they are completely in range but my rheumatologist evaluated my symptoms, age and X-rays. I started on 8 mg Medrol (methylprednisolone) and now down to 2 mg. If I try to reduce further, joint stiffness and inflammation sets back in. Was told it could be withdrawal symptoms but it gets so bad and unable to move about. No way to test if no markers to compare.

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2 replies
hopeinal | @hopeinal | May 26 11:06am
In reply to @susanew "I have no blood test markers …they are completely in range but my rheumatologist evaluated my..." + (show)
@susanew

I have no blood test markers …they are completely in range but my rheumatologist evaluated my symptoms, age and X-rays. I started on 8 mg Medrol (methylprednisolone) and now down to 2 mg. If I try to reduce further, joint stiffness and inflammation sets back in. Was told it could be withdrawal symptoms but it gets so bad and unable to move about. No way to test if no markers to compare.

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My inflammation markers were out the roof when I first managed to diagnosis myself 18 months ago and had my doctor run tests to confirm. Last visit to my rheumatologist a month ago & they were very low. So one would think I could successfully carry on with my taper. I had gone from 15 mg daily down to 7 when the pain hit me like a ton of bricks. So I called my rheumie and he said go back up to 10 mg for a month. Tried that for a week and the pain never let up. 15 didn't work either. So now I'm at 20 mg, highest ever for me, and most of the pain is gone although I'm still locked up when I wake up every morning with shoulder and arm pain & stiffness. Very discouraged. Best of luck to you!

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ekgilpin1 | @ekgilpin1 | May 27 7:17am
In reply to @dadcue "You are a Saint for being a caregiver to your wife. I understand the ravages of..." + (show)
@dadcue

You are a Saint for being a caregiver to your wife. I understand the ravages of steroids and they are widely used in neurosurgery. I have very mixed feelings. I had a hard time on another forum hearing how steroids are promoted as a miracle for PMR sufferers and the "only option." I think PMR patients should be clamoring for better options or nothing will ever change.

You might be interested in a dialog I had on another forum. The person who communicated with me was a Saint too. She made me aware of the consequences of long term prednisone use before she died of complications after an adrenal crisis. This conversation happened virtually about the same time my rheumatologist suggested I try Actemra. It was a low point in my life. I desperately wanted to be off prednisone and I was feeling down. I want people to hear her words about the
subject.

The flip side was another forum that promoted lifelong prednisone as a better option than Actemra. One person in particular wasn't very supportive. The other forum collectively of many PMR patients was great though. Unfortunately, the opinions were dominated by just a few individuals. This forum is truly an asset and much better because all viewpoints are respected.

I have posted the following discussion before but I don't know if anyone ever reads it. I think it is good information but I needed to rethink my opinions about Prednisone.

https://www.healingwell.com/community/default.aspx?f=16&m=4073463

Most doctors realize what happens when someone is on long term steroids. I can never "encourage" any person to take more Prednisone for any longer than is absolutely necessary. Then again, I took high doses of Prednisone for a very long time. I don't know what is the best thing to do. I will say, Prednisone prevented me from being addicted to narcotics so there are benefits to taking Prednisone.

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Thank you so much for the link above discussing the dangers of prednisone. It was very helpful and informative.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 27 1:52pm
In reply to @art43 "The links you and others often provide are helpful, and can avoid repetitive explanations. Wishing that..." + (show)
@art43

The links you and others often provide are helpful, and can avoid repetitive explanations. Wishing that the admins would establish a library of PMR-relevant links to reputable academic sources (e.g., nih) that relate to the recurring issues presented by participants.

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Great idea, @art43, for members to crowdsource helpful links and resources. Members have done this in other groups, for example:
- Knowledge is power: Add your helpful neuropathy resouces and links https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/
- Resources for The ABC's on Bronchiectasis and MAC (NTM)
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

I encourage you to start a similar discussion in the PMR support group (https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/) and invite others to contribute. 🙂

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nancy334 | @nancy334 | May 28 11:09am
In reply to @susanew "I have no blood test markers …they are completely in range but my rheumatologist evaluated my..." + (show)
@susanew

I have no blood test markers …they are completely in range but my rheumatologist evaluated my symptoms, age and X-rays. I started on 8 mg Medrol (methylprednisolone) and now down to 2 mg. If I try to reduce further, joint stiffness and inflammation sets back in. Was told it could be withdrawal symptoms but it gets so bad and unable to move about. No way to test if no markers to compare.

Jump to this post

I’ve had no markers and have had PMR for almost 4 years now…was off prednisone after long taper but pain never left during or after finishing the taper …couldn’t walk or stand for long …really reduced my life . I thought it was osteoarthritis kicking in but dr put me on 5 mg of prednisone to see …did nothing …so jumped to 20 mg …with in 3 hours I could walk normally ..I felt like a miracle had happened …that was yesterday …stiff this morning but nothing like before …I’m to stay on this amount for a week and then see where we go from there…being pain free is certainly wonderful …fyi I’m on Actemra shots biweekly .sulfasalazine hydroxychloroquine daily but haven’t been this pain free in all that time since diagnosed

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1 reply
susanew | @susanew | May 28 12:09pm
In reply to @nancy334 "I’ve had no markers and have had PMR for almost 4 years now…was off prednisone after..." + (show)
@nancy334

I’ve had no markers and have had PMR for almost 4 years now…was off prednisone after long taper but pain never left during or after finishing the taper …couldn’t walk or stand for long …really reduced my life . I thought it was osteoarthritis kicking in but dr put me on 5 mg of prednisone to see …did nothing …so jumped to 20 mg …with in 3 hours I could walk normally ..I felt like a miracle had happened …that was yesterday …stiff this morning but nothing like before …I’m to stay on this amount for a week and then see where we go from there…being pain free is certainly wonderful …fyi I’m on Actemra shots biweekly .sulfasalazine hydroxychloroquine daily but haven’t been this pain free in all that time since diagnosed

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Here is the problem with steroids. It can raise your ocular pressure. Mine was discovered during yearly ophthalmology exam. Ophthalmologist said it was higher than before and to check it every 6 months. I had noticed some eye swelling and really want to reduce steroid intake now especially since this new development

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nancy334 | @nancy334 | May 28 1:36pm

My daughter is an optometrist and has had me go for regular eye pressure tests since I started on prednisone…but yr right …many people don’t know to do that !

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