PMR and prednisone

Posted by gramsof6 @gramsof6, Sep 19, 2024

I was diagnosed in April with PMR. Because it was mainly in my shoulders I saw an orthopedic surgeon who put me on an inflammatory. Shortly there after I had an appointment with my rheumatologist and diagnosed me promptly.
He started me on 5mg 2 to 3 a day of prednisone.
The problem is I am a diabetic but was only on metformin. Now I am using small doses of insulin. What I don't understand, did you stay on a consistent everyday?
On days I feel great I avoid taking my prednisone. Recently my pain is now in my thighs which is affecting my ability to walk. I have a granddaughter that plays college soccer, 2 granddaughters that play high school varsity soccer and we attend high school football games. This means that at least 4 times a week I am climbing bleachers. I believe this is a contributing factor to the thigh pain. I am OCD about my house, enjoy cooking and canning and I am also a quilter. I am finding these activities difficult too. I am really confused about the proper way I should be taking my prednisone. My rheumatologist is aware that I am concerned about my sugar and has not established a definite guide line for taking the prednisone. I use infrared heat, supplements, oils and Voltaren
I would appreciate any suggestions. I did receive a steroid injection in one arm because the bursa was so inflamed it caused a large painful bump. Has anyone tried physical therapy or massages? Today was horrible and I retreated to bed. I am so glad I found this group and am looking forward to any suggestions. We are planning a trip to Gatlinburg and would enjoy hiking. Thank you, Deb from Ohio

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

@ailish

I'm struggling in the mornings with my arms. I'm currently on 10mg & my doctor suggested I go to 9mg after 4 weeks which will be tomorrow. Has anyone tpered whilst still in pain

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I was never pain free before PMR was diagnosed. I didn't expect to be pain free after PMR was diagnosed.

It was more about the pain being "tolerable" when I tapered off prednisone. After I completely tapered off Prednisone ... the pain was still tolerable. Except for a couple of exceptions, the pain has been tolerable for 5 years. The exceptions were not because of PMR.

My rheumatologist says that I still have PMR but it isn't being treated with prednisone anymore.

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@ailish

I'm struggling in the mornings with my arms. I'm currently on 10mg & my doctor suggested I go to 9mg after 4 weeks which will be tomorrow. Has anyone tpered whilst still in pain

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You can wait a week and see how you feel. You probably have maybe 9 months? ahead of you on prednisone so an extra week won't make much difference. Stay as active as you can and try to maintain your range of motion gently.

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@ailish

I'm struggling in the mornings with my arms. I'm currently on 10mg & my doctor suggested I go to 9mg after 4 weeks which will be tomorrow. Has anyone tpered whilst still in pain

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Nope and my Dr never asked me to. It would be pretty hard to taper if the PMR is still active. Did they check sed rate and ESR. Those should not be elevated.

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First, just because you feel better for a day or two doesn't mean your body is better. So please be careful with up and down steroid meds. I hope your goal is to get better long term. I went on an anti inflammatory diet, it helps a lot. Did it over time cutting out foods one by one. Refined sugar is a biggie.

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@oldbtstlshrp2

Thanks for that input. I am constantly experimenting with splitting doses between A.M. & P.M., different time of day for body clock function etc. I am on 12.5mg currently from 15mg last week & before.

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Please talk with a pharmacist or doctor about playing with or splitting any dosages. Also read up and become knowledgeable about your body's natural production of steroids and it's daily cycle. Splitting PMR steroid dosage is not common, but can be done. Your doctor can talk you through why and how to best do it, if your situation calls for it. Drugs are different and not all drugs should have a constant level in your blood stream. Mimicking the natural cycle should be the goal. Steroids are hormones, they are very complex not a simple concept and many are tightly tied to each other.

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@dadcue

I was never pain free before PMR was diagnosed. I didn't expect to be pain free after PMR was diagnosed.

It was more about the pain being "tolerable" when I tapered off prednisone. After I completely tapered off Prednisone ... the pain was still tolerable. Except for a couple of exceptions, the pain has been tolerable for 5 years. The exceptions were not because of PMR.

My rheumatologist says that I still have PMR but it isn't being treated with prednisone anymore.

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That's interesting. Thank you. I was diagnosed in November 2024 so I guess I have quite a journey ahead

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@tuckerp

Nope and my Dr never asked me to. It would be pretty hard to taper if the PMR is still active. Did they check sed rate and ESR. Those should not be elevated.

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I will have this check next week. In the meantime I will stay on 10mg. Thank you.

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@wfroslansky

You can wait a week and see how you feel. You probably have maybe 9 months? ahead of you on prednisone so an extra week won't make much difference. Stay as active as you can and try to maintain your range of motion gently.

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Thank you so much. Sound advice

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@jabrown0407

First, just because you feel better for a day or two doesn't mean your body is better. So please be careful with up and down steroid meds. I hope your goal is to get better long term. I went on an anti inflammatory diet, it helps a lot. Did it over time cutting out foods one by one. Refined sugar is a biggie.

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Did you cut out sugar completely? I’m trying to substitute stevia, organic honey and blue agave. I also eat peanut butter for protein. Wondering if these products are as inflammatory as refined sugar ?

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@susanalka

Did you cut out sugar completely? I’m trying to substitute stevia, organic honey and blue agave. I also eat peanut butter for protein. Wondering if these products are as inflammatory as refined sugar ?

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I went on a pretty strict keto diet for about 2 years. I could not go into keto because I had no energy at the low amount of carbs required. Carbs turn to sugar so the idea is limit as much sugar as possible. Stevia was considered the best sweetner. Most artificial sweetners were not recommended due to processing. Honey is nothing but sugar. Even organic. Peanut butter was a good snack. I like peanut butter. But 2 tablespoons of PB has about 5gm of carbs. Then what do you put the PB on? Ritz cracker? That blows it. Celery was my next choice. One stalk has about 1gm. Plus the 5gm of PB. You have eaten 7gm of your 20gm for the day. ughhh. It was too much for me.

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