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Two weeks in, frightened by meds, PMR and COVID Booster Shot
Polymyalgia Rheumatica (PMR) | Last Active: Apr 22, 2023 | Replies (87)Comment receiving replies
55, active and healthy until PMR hit me overnight in May. Neck one day, shoulders the next and finally hips then wrists. Went from hiking 12 miles on Sunday to not being able to hold a coffee cup or get out of bed without help by Friday. Started 15mg of prednisone on that Monday and was much better in 6 hours and almost 100% within 24 hours. I am lucky that I got into a Rheumatologist one week after symptoms started. She diagnosed PMR after exam and ruling out all other likely possible causes. Dropped to 3mg this week and feel good.
Tips:
-Read this: https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
-Anything that your doctor recommends that goes way outside these guidelines- ask why
-Taper slowly but not too slowly. One example is drop 2.5mg a month until 10mg, then 1mg a month until 5mg and then .5mg every 1-2 weeks until zero.
-Pain is a major indicator or remission. Prednisone is not making PMR go away, just treating the symptoms so if you do not have pain, a quicker taper is fine but pain should be the primary guide.
-Keep a daily log of dose, pain levels, mobility levels, activity levels and any other items of note. Helps to understand and gauge how close you are to remission
-Keep moving. Add activity back slowly and let pain be your guide. I am back to running, hiking 5 miles, lifting, mountain biking and paddle boarding.
-Naps and good sleep are your friends. I now get 7.5-8 hours a night. Needed multi hour naps for the first 5-6 months but do not need them as much now and 30 mins does the trick.
-Read through this and model your daily self assessments off of the PMR-AS which is the PMR activity score.
-PMR-AS is defined in table 1 here: https://ard.bmj.com/content/70/3/447
PMR-AS=CRP (mg/dl)+patient's pain assessment (VAS 0–10)*+physician's global assessment (VAS 0–10)†+(morning stiffness (min)×0.1) + EUL (0–3)
↵* 0=no pain; 10=unbearable pain.
↵† 0=no disease activity; 10= highest possible activity.
↵‡ 0=above shoulder girdle; 1=up to shoulder girdle; 2=below shoulder girdle; 3=none.
CRP, C-reactive protein; EUL, ability to elevate the upper limbs; VAS, visual analogue scale
Good luck!
Replies to "55, active and healthy until PMR hit me overnight in May. Neck one day, shoulders the..."
Hi- hoping you can advise me. I am a 62 yr old diagnosed with PMR late 12/2021. Started on 15mg of Predisone and by May I was down to 9mg. Then, my brother died tragically and it through me into a flare up and went back to 12mg. Didn’t get into a Rheumatologist until Sept 2022. He ck’d my inflammation markers and the ESR was normal but CRP still elevated. Ran many other test with one returning elevated, positive ANA. He told it keep on Prednisone and to reduce by 1mg a month and see him late November. He started me in Plaquenil 200mg twice a day did asked me to repeat labs in a month. This resulted in high ESR as well as CRP. I did get a flu vaccine the first wk of October which I found to have been when the stiffness was worse about a wk after the injection and my elevated markers were done around the same time. Saw the Rheumatologist and he made no changes to the Prednisone and added oral Methotrexate 10mg every week. I still awake with a PMR pain score if 4-5 and doesn’t subside until 2-3pm. My soreness/pain has always been in my biceps, neck and now upper thighs.
Any advise
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Wow, thank you for this! Your inset was very similar to mine. Within a couple of weeks I went from walking 10km and cycling 65km to not being able to get out out of a chair. I’ll definitely check out the info. So far, on 10mg a day, I’m doing well and preparing to taper down soon. I’ve noticed that the carbs (bread, pasta, beer…) are killers for me. I’ve found alternatives so everything is hunkydory. Good luck to you and again, thank you for the valuable informaion.