1. < Polymyalgia Rheumatica (PMR)

PMR and pain levels

Posted by debbiebas216 @debbiebas216, Mar 7 10:45am

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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debbiebas216 | @debbiebas216 | 1 day ago

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.

REPLY
debbiebas216 | @debbiebas216 | 1 day ago
In reply to @pdxmac "I started MTX using the injections because I'm already susceptible to GI distress. My rheumatologist had..." + (show)
@pdxmac

I started MTX using the injections because I'm already susceptible to GI distress. My rheumatologist had me start at a lower dose and gradually increase to the full 0.8mL dose. I've been at that level for two weeks now and I can already feel a huge difference. Energy is back, sleep is better, etc. Given all the progress, my rheumatologist agrees I can speed up the pred taper too see how it goes.
I've also incorporated a lot of anti-inflammatory foods like berries, green tea, moringa powder, etc. and am avoiding foods that make it worse.
Good luck with your own experiments!

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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.

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barb26 | @barb26 | 1 day ago
In reply to @susanalka "Hi @debbiebas216 , I am on a similar taper schedule, 8mg reducing 1mg every 4 weeks...." + (show)
@susanalka

Hi @debbiebas216 , I am on a similar taper schedule, 8mg reducing 1mg every 4 weeks. I also have morning stiffness and some pain that mostly goes away once I’m up and active. I’ve always been very flexible but now can’t stretch my legs ( hamstrings) as far as I used to. I’ve thought about adding another 1mg to see if that helps. I’m reluctant to go backwards in the taper because it’s taken so long to get to this point. My PCP didn’t explain any of the ups and downs with me when I started prednisone. I guess she assumed I would contact her if I had any issues. I probably should have pressed her at the time but I was just happy to have a diagnosis that was obvious and a rather simple treatment plan. I’ve learned now there is nothing simple about this disease and the treatments. Good luck and keep us posted on your progress.

Jump to this post

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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cavalryman | @cavalryman | 7 hours ago

Try 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.

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