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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hi Everyone,
Seven weeks in and I'm only working with a PA until I can get in the the Rheumatologist - 2 more days. I diagnosed myself and she agreed after the blood test was positive and with the amount of prednisone I wanted to take - 15 mg, which I take all at once in the morning at about 5:30 AM with food.
I wait a bit, maybe an hour and start on everything else - tylenol, lion's mane mushroom alcohol extract, turkey tail mushroom extract (I forage for my own mushrooms), two cubes of turmeric (I put fresh turmeric that I grow myself or buy at Publix into a blender and add enough water to make a slurry and put in ice cube trays).
I am usually fit enough to play Pickle Ball by 9:30. If I didn't live for Pickle Ball I really think I would curl up in a ball. Some days are much worse than others, today being one. I have been a vegetarian for over 30 years and rarely eat processed foods. I tried not drinking alcohol but found no difference.
Before the prednisone I could not put down the dogs' food bowl without moaning. I live alone so there is no one to hear. I had the first covid shot and the booster when they came out but no others. I was just fine living my life as a potter (I can still pot) and playing Pickle Ball when I got sciatica and after a week whoa this happened out of the blue. Sciatica disappeared the day this started. Shoulders and hips. I am in so much pain in the mornings I can't imagine tapering down from the prednisone.
That's all, just wanted to say hey and I read all you all write here. Oh my age - I'm just now 64.
Replies to "Hi Everyone, Seven weeks in and I'm only working with a PA until I can get..."
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A couple of comments:
1- Interesting about the sciatica. I had off and on "mild" leg/back pain since early 2022 and it resurfaced around April this year. It progressively was getting worse, with pain/stiffness in my hip flexors (which is not typical), so went to my ortho/spine clinic. Everything was OK with spine, but the inflammation markers were very high. Went to my PCP and worked out it was PMR and confirmed when I finally met my rheumatologist. Anyway, now that my pain is under control with prednisone for the past two months, my right leg sciatica is back for the past two weeks. I started doing yoga stretches about a week ago and it is really starting to improve!
2- Prednisone taper - I was started at 20mg (10/morn and 10/eve) and it worked wonders and was immediate. Was at that dose for 5-6 weeks. After meeting with rheumatologist, did my first taper to 17.5 and she insisted I take all at once. Well, after a couple of days the pain and stiffness became too much, so I went back to my 10/10 for a couple of days and knocked it out. I then tried 10/7.5 split for two weeks and that worked very well, with just some mild shoulder/wrist discomfort. I'm now 5 days into my 10/5 step down and so far things have stayed the same for shoulder/wrists. Reading a lot of posts here, it makes a lot of sense to taper no more than 10% at a time and wait at least two weeks before the next taper. As important, listen to your body as we are all different.
I'm 63 and just wanted to let you know how someone your age and also a few months into this "thing", is seeing some light at the end of the tunnel and feeling more positive.
Wishing you the best!