Newly diagnosed and confused about the goal

Posted by cj762 @cj762, 2 days ago

I am newly diagnosed PMR by my primary doctor. My symptoms started slowly with stiffness and pain in my hamstring area of my left leg only. Over a 3 month period of time the stiffness, pain, and feeling like the muscle would just snap in 2 spread to both legs and lower buttocks area, then to both hip girdle area. My doctor thought I might have sciatica and sent me to PT and an X-ray. X-ray showed L5. l4 area usual arthritic changes in a 73 year old body. PT made me feel better overall physically, but did nothing for the pain. Doctor then did blood work which showed protein reactive score of 17. Put me on 15 mg of prednisone. I have only been on it for 9 days. Some ever so slight improvement in morning pain, it doesn’t last quite as long as before medication, but still uncomfortable. If the leg pain is better the hip pain seems worse.
Is the goal of the prednisone to eliminate the pain or just lessen it? How long should I wait before saying although better the pain isn’t all that much better. I am not sure how to measure this. I am happy for any level of pain relief but was hoping for something better than what I am currently experiencing. I am expecting too much too soon?

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

Profile picture for pattyk1971 @pattyk1971

I was told by my primary care physician today that she believes I have PMR based on the blood work I took last Thursday as well as my symptoms. My pain started during the night a few weeks ago down my leg - but only when I was laying down - not any other time. Then my back went into what I precieived as a spasm. It immediately got worse to the point where I could hardly walk or sit... only standing still brought relief. Next was serious pain in my shoulders. That's when I realized something was definitely wrong.
I am a 76 yr old woman who does line dancing twice a week and takes light exericise classes a couple of days. My mother developed PMR at about my age but I read it wasn't considered a condition that was hereditary. She also developed giant cell arteritis. My next step is to see a rheumatologist.
I'm vey anxious about this diagnosis but so happy that I came upon this support group - I think it will be very helpful.

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@pattyk1971 yes, this group has been my savior.
Welcome….ask any and all.
If not done already, start a daily journal of pain level, meds, exercise and any thing else. Very good for communication with drs.

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Profile picture for tweetypie13 @tweetypie13

@pattyk1971 yes, this group has been my savior.
Welcome….ask any and all.
If not done already, start a daily journal of pain level, meds, exercise and any thing else. Very good for communication with drs.

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@tweetypie13 Thank you for the advice! I will start a journal.

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God Bless all of you.
I am so grateful to have found you.
I have just taken a blood test for PMR.

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I was started on 15mg prednisone, which felt good for the first two days but had to go to 25mg for any real and lasting relief.

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I don't know if anyone else has tried it, but because I have PMR and suspected of also having mgus, I have a hematologist appointment tomorrow. I tried getting suggestions for questions for the hematologist but no one responded, so I turned to the Claude app. I actually had a conversation and tested it with my blood work results. While I know it's not a replacement for my doctors, I did get some good advice for questions to ask. I came away impressed with the whole experience. The way it mirrored everything my rheumatologist told me was spot on. I'm going to my hematologist appointment tomorrow feeling prepared now.

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Profile picture for kjoed53 @kjoed53

I don't know if anyone else has tried it, but because I have PMR and suspected of also having mgus, I have a hematologist appointment tomorrow. I tried getting suggestions for questions for the hematologist but no one responded, so I turned to the Claude app. I actually had a conversation and tested it with my blood work results. While I know it's not a replacement for my doctors, I did get some good advice for questions to ask. I came away impressed with the whole experience. The way it mirrored everything my rheumatologist told me was spot on. I'm going to my hematologist appointment tomorrow feeling prepared now.

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@kjoed53 I’m 79 yo female, super active and agile. Cure on No meds.
Ok I was diagnosed with PMR April 2024, now in remission 🤞
In the late 90’s it was discovered I had MGUS. I was tested every 6 months, then extended to yearly. NOTHING happened. I was tested again abt 8 months ago, by Hemotologist and still all good. No meds, it’s just there. Had not been a part of my life. As far as I can tell , PMR and MGUS are not related in anyway.

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