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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

@scpartain

So glad to know you are finally getting to see a rheumatologist. I'm sure that will be helpful to you. My PMR is currently in remission. The rheumatologist advised me to avoid strenuous exercise, especially stair climbing. That is not possible since I live in a house with four floors. I still have some residual pain and stiffness in my shoulders, buttocks, and thighs, but off of prednisone and over all good for a seventy-six year old person. I can relate to the jaw pain. When my PMR was active, there were times when I could not open my mouth to eat; it was too painful. I wish you good luck at your appointment with the rheumatologist and I hope you will update your treatment and progress.

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Have any of you been diagnosed with GSA since you all have/had experienced jaw pain, which jaw pain is one of the main symptoms of GSA?

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@sloped483

Have any of you been diagnosed with GSA since you all have/had experienced jaw pain, which jaw pain is one of the main symptoms of GSA?

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When my PMR was active I was not aware that jaw pain was a symptom of GCA and did not talk to my rheumatologist about it. However, I did not experience any headaches or other such symptoms and the 15-20 mg. doses of prednisone were adequate to control the pain, so I doubt if I had GCA.

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Thanks for your kind comments. A slow taper is best. It took three months of gradual reduction for me to be able to discontinue prednisone, but others need even longer times. My rheumatologist advised that the 5 mg. level is the point where many people experience a relapse of pain. However, I was able to keep tapering after reaching 5 mgs. Each time the dose was reduced I experienced a brief period of increased pain but was always able to overcome it in a couple of days. After I got to one mg. I was able to discontinue the drug completely. I hope your journey goes smoothly and you are able to achieve remission. All my best to you.

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@sloped483

Have any of you been diagnosed with GSA since you all have/had experienced jaw pain, which jaw pain is one of the main symptoms of GSA?

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Welcome @sloped483, It sounds like you may also have Giant Cell Arteritis (GCA) along with PMR. There is another discussion you may want to join and learn what other members like @tsc, @norieaugustine, @artist01, @tillysam and others have shared:

PMR connection to GCA: https://connect.mayoclinic.org/discussion/pmr-connection-to-gca/

Have you been diagnosed with GCA?

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@johnbishop

Welcome @sloped483, It sounds like you may also have Giant Cell Arteritis (GCA) along with PMR. There is another discussion you may want to join and learn what other members like @tsc, @norieaugustine, @artist01, @tillysam and others have shared:

PMR connection to GCA: https://connect.mayoclinic.org/discussion/pmr-connection-to-gca/

Have you been diagnosed with GCA?

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Thanks for the welcome. I was just recently diagnosed with PMR and put on a low dose of methylprednisolone and am just currently learning all that it entails as well as learning how GSA is connected to PMR and the seriousness of it.

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@johnbishop

Welcome @sloped483, It sounds like you may also have Giant Cell Arteritis (GCA) along with PMR. There is another discussion you may want to join and learn what other members like @tsc, @norieaugustine, @artist01, @tillysam and others have shared:

PMR connection to GCA: https://connect.mayoclinic.org/discussion/pmr-connection-to-gca/

Have you been diagnosed with GCA?

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Hi @sloped483, I have Giant Cell Arteritis. I experienced a very stiff neck with pain running down both sides of my head, tender scalp, a dry cough, short stabbing pains from my ear to my nose and trouble seeing out of my right eye a couple of times in addition to anorexia, loss of appetite and anemia (manifest as extreme fatigue). I didn't have any jaw pain though.

My mother in law also had Giant Cell and her jaw hurt so badly she could not finish chewing her food. My Rheumatologist also described the jaw pain of GCA to me as difficulty chewing.

I hope that helps you. Best, Teri

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@milld835

No recommendations. I have had pain return in my neck, shoulders and between shoulder blades after reducing from 15mg to 12.5, then upped it to 13.75 and now back to 15 mg. Jaws started raging after supper the other night. Went into ER the next morning as the jaws were still bad. Then that stopped (so far), but the neck and shoulders this morning are not good. Neurologist recommended staying at 15 mg to see if I "level off" and then will decrease by 1 mg. in another week. Quite the rocky road by times, but nothing compared to the pre-diagnosis pain. Good news is I finally have a Rheumatology Clinic appointment for May 30, also an actual Rheumatologist. The "urgent" referral has been since Jan. 5/22. Canadian medical system may be free, but it's not the best.

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May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.

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@aspine

May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.

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Thanks for the information. I'll check it out.

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@aspine

May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.

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this truly a great PMR site

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@aspine

May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.

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Thank you. I appreciate evidenced based sites as well as this supportive community group.
My tapering doses continue to be adjusted when my trigger points become rotating knifepoint lightning burns.

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@aspine

May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.

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This is a amazing site. Thank you for the reference. Much appreciated!

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@doloresmacneil

Thank you. I appreciate evidenced based sites as well as this supportive community group.
My tapering doses continue to be adjusted when my trigger points become rotating knifepoint lightning burns.

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You shouldn't have to be suffering those "knifepoint lightning burns". You should be proactive in tapering – not reactive. But there are smart ways to do that, and the plans in that site give you lots of options to figure out what works for you – without pain. Pain is inflammation, and that's what the pred is meant to get rid of. But you should be in control of your body. Not the prednisone and not the PMR. Good luck.

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