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Newly diagnosed and confused about the goal
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?
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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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2 Reactions@tweetypie13 Thank you for the advice! I will start a journal.
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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4 ReactionsI 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.
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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3 Reactions@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.
@tweetypie13
It's not totally uncommon for anyone with PMR to also have MGUS. As with most PMR factors, it's not something that has been significantly studied and not anywhere near being understood. My numbers and symptoms seem to rule out smoldering myeloma or anything more serious but I'm guessing that there's more blood work to be done.
I was diagnosed with PMR in January 2024, which was changed to seronegative RA six months later. In February 2025 I was diagnosed with MGUS. I get labs every six months, and the hematologist has been entirely reassuring. She says in the vast majority of cases it does not progress to myeloma. I am trying hard not to worry about it. I believe MGUS occurs along with many autoimmune conditions but is not well understood.
I am newly diagnosed as well and it is definately a bit confusing. My family doctor prescriped 20mg prednisone for 5 days and a referral to a Rhuematologist. After the first dose, it felt like a miracle! I'd had pain and stiffness in my shoulders so bad I could barely lift my arms. Pain in ankles, knees, upper thighs, wrists and forearms. That first week lessened the pain, but toward the end of the week was starting to come back. Family doc also gave me several days worth of Tramadol. Rheumatologist prescribed a month's worth of Prednisone with a tapered dosing. I'm on the last week at 5mg per day. I take it early in the morning, around 5:30-6am and go back to bed.
Seems that at each lowered dose, the first couple of days the pain returns in various areas, but mostly it seems by ankles, knees and thighs, beginning midday getting worse as the day goes on. Happened last night and I was so uncomfortable that I had to take a pain reliever (had left over hydrocodone from wrist surgery in December) Today, I feel better and pain free but slightly stiff.
My Rheumatologist also prescribe hydroxychloroquine twice a day. I was told that is supposed to suppress my immune system and will take up to 3-4 months to take effect.
So, it seems that the end goal of treatment to be painfree and as functional as we were before, but we all are taking different paths to get there! What does a true remission or recovery look and feel like? Some days I feel like I'm just powering thru the discomfort. Btw, I am a 67 yr old woman.
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1 ReactionI had my hematology/oncology appointment this morning. More blood work this morning...I have a bone marrow biopsy scheduled for next week and a PET scan that is being scheduled within the next 3 weeks.