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PMR and pain levels
I was diagnosed with PMR the end of October. I’m presently taking
7 mg and on a tapering of 1 mg every 2 weeks. I have stiffness and pain (5-6 level) every morning but afternoons and evenings much better
(1-2). The side effects (weight gain, A1C levels up, heart palpitations etc) are worrisome, so I’ve decided to try and taper at the current rate until I’m off prednisone. I walk most days up to 2 miles and I’m mostly gluten free (my palpitations were much worse after having any breads). I started drinking electrolytes because I’m having some dehydration issues, which is helping. My rheumatologist is suggesting leflunomide but I will not go on that due to those side effects and I’d still need to tape off prednisone. I’ve tried Tylenol arthritis but was no help.
Looking for opinions on my mind set of just live with the morning pain and hopefully be able to get off the prednisone asap.
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Hi Susanalka
Thank you for sharing. Yes we do sound similar. I meet with my rheumy next Thursday so will go over everything then. I’m sticking for now my 1 mg every 2 weeks but we’re going away so I plan on sticking with the 6 mg while away. It seems most people taper every 4 weeks which I’ll ask about. I also have more pain the first 5-6 days on a new taper.
I started on 15 mg of prednisone but that didn’t help so she upped me to 20 mg and then tapered
2.5 mg every 2 weeks until I got to 10 mg but the 7.5 was rough so she said 1 mg every 2 weeks starting at 9 mg. I’m now at 6 mg but pain and stiffness mostly until the afternoon. She has suggested leflunomide a few times which I, right now, will not go on unless she can convince me otherwise. I’m figuring I still have to taper off the prednisone and then adding one more drug is not sitting well with me.
It was your stretching hamstrings that caught my attention. I have been practicing yoga for 25yrs. and taught for 10yrs. Being on the hypermobile side it was a shock when I could not go farther in forward bend than to touch my knees and could not lift my arms higher than shoulders. It's been a 9 mo. journey so far but back to almost normal flexibility. Tapering down from 5mg to 4.5mg at present. It has taught me patience and being ok where I am in the present. Good luck to you! Namaste.
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1 ReactionTry splitting your dose, large amount with breakfast and 1mg
about 9 or 10pm with some yoghurt. That might be enough to manage the pain tbat arrives between 4am and 5am. I used the split dose method till I got down to 3mg and then went back to all with breakfast.
This gives me a lot of hope
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1 ReactionI started at 15mg, 12 mg, 10 mg and now I am taking 9 mg tapering 1 mg every 4 weeks (2 weeks more than you) So far no pain except when I do too much fiscal work with my hands, wrists and shoulders. My biggest side affect are the palpitations every day, sometimes very low heart rate (32-34 bpm), dizziness. Wishing you all the best!
@ndep
Prednisone increased my heart rate so that I had to increase some heart meds. Are you on any heart meds? Did you have the same issues at 15mg? If not then maybe you need to do a slower taper. I'm surprised that none of your doctors are concerned and doing anything. Under 40 BPM is dangerous from my understanding.
Did not read any other posts other than this first one from Debbie so I apologize if I repeat other comments. It seems starting at 7mg was a low dose, and brings to question what your “numbers” were when rheumatologist checked its blood work. But starting at 7mg and getting relief would be great. I started at 20mg in December of 2024 found immediate relief with some pains off and on. I have worked hard to reduce dosage and after some ups and downs with milligrams I am now at 2.5. I wonder if dropping 1mg every 14 days may be your issue. I began dropping 1 milligram quickly and paid for it in pain and discomfort, went back up and then slowly dropped 1 mg about every 21 days to a month. Once I got to 5 I followed some advice that I got from this site and only dropped a 1/2 mg about every 21 days. I still have some pain and stiffness but I do think most is from osteoarthritis and age (70). And I do use ona very limited basis Advil, Tylenol Arthritis, or Aleve on a rotating basis. Not often, maybe once a week. Good luck
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1 ReactionI was getting a lot of pain when trying to taper too fast, ie. one mg /week from about 10 mg to 5mg. I upped the dose back to 10 and it was a miracle! No pain! I stayed on 10 for 3 months and have now started to taper by .5 mg this week…so far so good.
To get over the psychological stress of having to take prednisone, try reading Kate Gilbert’s book
https://books.google.com/books/about/Polymyalgia_Rheumatica_and_Giant_Cell_Ar.html
I can only say that I now recognize the value of being able to have a pain free life as opposed to any problems with prednisone. Pain being more of a stressor!
For me it was compound physical injuries and the stress around them that I believe triggered the PMR. I have also found the listening to Wendy Jones and her guided meditations on YouTube has helped hugely with stress.
Good luck!
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