1. < Polymyalgia Rheumatica (PMR)

Rheumatoid Drs

Posted by bren0718 @bren0718, Mar 8 10:08am

I was diagnosed with PMR in August of 2023. My family doctor has been all I have seen about my disease. I was ok with her until I came on this support group and now realize I dont know much about the disease itself or about tapering off of the prednisone. In December I was diagnosed with severe osteoporosis. My Dr told me to start tapering off quicker . I have gone from 20 mg to 7.5 . She never told me at what rate to taper or that if I was having a hard time I could go back up for a bit and then try again. I think I need to see a specialist after seeing all your comments. I have only had blood work done the one time and don’t understand the numbers that people are posting. I feel I have done myself a disservice by not seeing a specialist. Do any of you just have your family physician treat you ?

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

nancy53 | @nancy53 | Mar 12 9:03am
In reply to @bren0718 "Thank you for your advice. I did message my family Dr for a referral. Unfortunately it..." + (show)
@bren0718

Thank you for your advice. I did message my family Dr for a referral. Unfortunately it takes about 3 months around here to get into someone and that is if I’m willing to drive an hour away. I’ll continue to try a slower pace to taper at in the mean time.

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Book the appointment and ask to be on their cancellation list. It took me 2 1/2 months to see a Rheumatologist but sooooo worth it.

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1 reply
bren0718 | @bren0718 | Mar 12 10:46am
In reply to @nancy53 "Book the appointment and ask to be on their cancellation list. It took me 2 1/2..." + (show)
@nancy53

Book the appointment and ask to be on their cancellation list. It took me 2 1/2 months to see a Rheumatologist but sooooo worth it.

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Great idea! Thank you

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jrp11948 | @jrp11948 | Mar 13 8:37am

A doctor friend of mine says the PMR won’t kill you, but the Prednisone will. Best to see a rheumatologist.

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bren0718 | @bren0718 | Mar 13 6:24pm
In reply to @emo "It seems like the chorus has all chimed in about the importance of a rheumatologist. I..." + (show)
@emo

It seems like the chorus has all chimed in about the importance of a rheumatologist. I really hope you’re able to find someone. I know it’s usually a long wait, but they’re so much better positioned to help with the how it all fits together. Maybe you can see them once and after that if you need follow-up, you can do telehealth?

It can be dangerous or at least risky treating PMR without a specialist because of the symptoms, side effects to prednisone, etc.

It’s pretty common for people with PMR to need to supplement calcium and vitamin D, and/or start a medication preventatively for bone loss. My dad didn’t have osteoporosis, but because of his age, his rheumatologist started him on Fosomax as others have mentioned.

It may be worth asking your primary about that too if you’re not already covered by your treatment for osteoporosis.

Wishing you all the best.

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Thank you. My Dr did put in a referral so now I just wait for an opening. I am taking the Evenity shot once a month because I have been diagnosed with severe osteoporosis. That’s why I am trying to taper so quickly. I need to get off the prednisone as soon as possible.

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