Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@dreamer38

Hi John, my pain was really bad today in wrists, fingers, shoulders & hips so I took an extra half a tablet today, the day I was supposed to be off the Prednisone. Doctor still not back from holidays. Did you ever do this? Thanks again!

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@dreamer38 I'm sure we've all done that when we were trying to taper off or down and the pain was too much. Yes, I've bumped my prednisone up when the pain from my PMR was a little too much than I could handle. My rheumatologist was great working with me to come up with a tapering schedule. What helped is he wrote a script for 1 mg prednisone pills and I could easily add 1 mg or 1/2 mg if needed.

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@dreamer38

Hi John, my pain was really bad today in wrists, fingers, shoulders & hips so I took an extra half a tablet today, the day I was supposed to be off the Prednisone. Doctor still not back from holidays. Did you ever do this? Thanks again!

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@dreamer38 I, too, have bumped my prednisone up and down. I’m tapering down from 15mgs. My neurologist knows that it’s going to be hard and she said to go at my own pace. I successfully went down to 14mgs, but when I dropped to 13, it was awful. I went up to 14 again and I’m like a new person! But I’ll keep trying.
I’m sort of in the same boat as you, but my doc isn’t on vacation, she went to a new job at UT. The doctor she put me with is on maternity leave, so I’m up in the air! I’ll just slowly work my way to 10mgs and stay there.

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@becsbuddy

@dreamer38 I, too, have bumped my prednisone up and down. I’m tapering down from 15mgs. My neurologist knows that it’s going to be hard and she said to go at my own pace. I successfully went down to 14mgs, but when I dropped to 13, it was awful. I went up to 14 again and I’m like a new person! But I’ll keep trying.
I’m sort of in the same boat as you, but my doc isn’t on vacation, she went to a new job at UT. The doctor she put me with is on maternity leave, so I’m up in the air! I’ll just slowly work my way to 10mgs and stay there.

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I know everyone is different but I got to1mg in 18 months. FYIO: I was down to 5 in a year and had to stay there for a few extra months as my numbers from my quarterly blood work had gone up. My tapering schedule was started at 20 and I went down 2 1/2 each month until I got to 10 and then went down 1 each month until 1. Stayed on 1 two extra months and after that I stopped Prednisone.. It may come back but for now I am good. I followed my Rheumatologist's tapering schedule and had quarterly blood draws and so far it worked for me plus lots of good help and encouragement from John and others on Mayo connect.

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It was not originally prescribed to take the place of ,but to assist the prednisone to taper off. My local rheumy says I can use at lower dose if needed and I do.I started on prednisone almost 4 years ago when my GCA and PMR was positively diagnosed.I have had many ups and downs but feel pretty good now. Thank the Lord. Long road. I have eliminated sugar, soy, dairy, and wheat which has helped immensely. I eat those things VERY sparingly. I wish you the best. This is just what ,by many trials ,has helped me.

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@becsbuddy

@dreamer38 I, too, have bumped my prednisone up and down. I’m tapering down from 15mgs. My neurologist knows that it’s going to be hard and she said to go at my own pace. I successfully went down to 14mgs, but when I dropped to 13, it was awful. I went up to 14 again and I’m like a new person! But I’ll keep trying.
I’m sort of in the same boat as you, but my doc isn’t on vacation, she went to a new job at UT. The doctor she put me with is on maternity leave, so I’m up in the air! I’ll just slowly work my way to 10mgs and stay there.

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@becsbuddy…thanks for the info. How long were you on 14 mgms before you dropped to 13 and did the pain come back right away? My rheumy is back from hols and I have an appt for tmo, thank goodness! Any info you want to pass on, I would appreciate getting. Again, my thanks for replying. It is a comfort to know that there are humans out there who have this dreadful disease! One doesn’t want to complain, and it’s a real blessing to have friends who have a sense of humour!!! For that, I am so lucky. Good luck with your next dr. I notice you said ‘neurologist’ and not ‘rheumatologist’. Didn’t realize that they could handle PMR as well.

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@johnbishop

@dreamer38 I'm sure we've all done that when we were trying to taper off or down and the pain was too much. Yes, I've bumped my prednisone up when the pain from my PMR was a little too much than I could handle. My rheumatologist was great working with me to come up with a tapering schedule. What helped is he wrote a script for 1 mg prednisone pills and I could easily add 1 mg or 1/2 mg if needed.

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@johnbishop..thanks for info, John. When you ‘bumped’ up your Prednisone, have you any idea how long you waited before ‘bumping’. I see the rheumy tmo, and I know she has talked about the handling of the pain, but truly, I don’t know how long to gauge the length of time when I must add more meds. I do like the fact that your rheumy wrote a script for 1 mg pred so you could add same if/when needed! I’m on quite a few meds and am very leery about taking more of one thing! Thanks for any wise words you can think of. When your pain was really bad, were you able to walk and did it help?

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@dreamer38

@johnbishop..thanks for info, John. When you ‘bumped’ up your Prednisone, have you any idea how long you waited before ‘bumping’. I see the rheumy tmo, and I know she has talked about the handling of the pain, but truly, I don’t know how long to gauge the length of time when I must add more meds. I do like the fact that your rheumy wrote a script for 1 mg pred so you could add same if/when needed! I’m on quite a few meds and am very leery about taking more of one thing! Thanks for any wise words you can think of. When your pain was really bad, were you able to walk and did it help?

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@dreamer38 I normally waited a few days to make a change just to see if it was an overnight thing with the additional pain level. If the pain level didn't increase and it was tolerable I let it go another day to see if it would stay the same or get better. Some instances I found that the pain level decreased a little the next day. I'm sure it's different for each of us so it's something you just have to experiment with by making small changes up or down. My small was usually 1 mg or 1/2 mg prednisone. I found a good pill cutter and could cut the 1 mg tablets fairly easy.

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@johnbishop

@dreamer38 I'm sure we've all done that when we were trying to taper off or down and the pain was too much. Yes, I've bumped my prednisone up when the pain from my PMR was a little too much than I could handle. My rheumatologist was great working with me to come up with a tapering schedule. What helped is he wrote a script for 1 mg prednisone pills and I could easily add 1 mg or 1/2 mg if needed.

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Glad you wrote about taking a small amount of predsnosone when tapping down or up John I have been meaning to do this A little goes a long way. Beryl

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@dreamer38

@becsbuddy…thanks for the info. How long were you on 14 mgms before you dropped to 13 and did the pain come back right away? My rheumy is back from hols and I have an appt for tmo, thank goodness! Any info you want to pass on, I would appreciate getting. Again, my thanks for replying. It is a comfort to know that there are humans out there who have this dreadful disease! One doesn’t want to complain, and it’s a real blessing to have friends who have a sense of humour!!! For that, I am so lucky. Good luck with your next dr. I notice you said ‘neurologist’ and not ‘rheumatologist’. Didn’t realize that they could handle PMR as well.

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@dreamer38 I’m so sorry, I guess I misled you. I have a brain lesion, not PMR, but tapering the prednisone can be the same. I was on 15mg for about 6 months, then dropped to 14, felt awful so back up to 15 for a few days, then 14 for several weeks, then to 13, again felt awful so back to 14. Today, I’m trying 13 1/2 and we’ll see how it goes! The prednisone just adds to our misery about the disease, doesn’t it? Best of luck to you!

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@becsbuddy

@dreamer38 I’m so sorry, I guess I misled you. I have a brain lesion, not PMR, but tapering the prednisone can be the same. I was on 15mg for about 6 months, then dropped to 14, felt awful so back up to 15 for a few days, then 14 for several weeks, then to 13, again felt awful so back to 14. Today, I’m trying 13 1/2 and we’ll see how it goes! The prednisone just adds to our misery about the disease, doesn’t it? Best of luck to you!

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If you’re not on warfarin try taking vitamins D3 and K2. They’re both anti inflammatory and great for the bones. I use K-vitamins.com read their website and links.

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@jimma

If you’re not on warfarin try taking vitamins D3 and K2. They’re both anti inflammatory and great for the bones. I use K-vitamins.com read their website and links.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6110503/
Vitamin K2 helps remove brain lesions.

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@johnbishop

@dreamer38 I normally waited a few days to make a change just to see if it was an overnight thing with the additional pain level. If the pain level didn't increase and it was tolerable I let it go another day to see if it would stay the same or get better. Some instances I found that the pain level decreased a little the next day. I'm sure it's different for each of us so it's something you just have to experiment with by making small changes up or down. My small was usually 1 mg or 1/2 mg prednisone. I found a good pill cutter and could cut the 1 mg tablets fairly easy.

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Thanks for info, John. Rheumy back in office now and I had to go back up to 20 mgm. Bit of a shock, but the pain was so bad. Also found out that #s were quite high. Can’t believe where one has pain from PMR…fingers, hands, hips, upper arms, neck, shoulders. Guess I should have called rheumy earlier…much earlier. Many thanks for everyone’s help!! It’s good to have this blog.

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@jchatchett

I started at 20 mg now I am at 9 mg.

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are you still on prednizone? If so, what is your dosage now?

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@igolf

are you still on prednizone? If so, what is your dosage now?

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Hi @igolf, welcome to Connect. I would also be interested in learning what dosage or if @jchatchett is still on prednisone. I have had two occurrences of PMR but it is currently in remission and I hope it stays there. Have you been diagnosed with polymyalgia rheumatica also?

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