Possible PMR

Posted by pah17 @pah17, Jan 10 8:28pm

I've been an active contributor to the Neuropathy support group. My Neurologist leans toward small fiber neuropathy because my EMGs have been normal. Fast forward. My complaint is numbness and tingling in the feet and calves with deeper discomfort at night. I take 300 mg Gabapentin at bedtime.
Over the holidays I developed a different kind of pain and discomfort at night. It started in the thigh crease in my right hip and traveled to the left. Day after day the discomfort, including marked stiffness lingered longer after getting up and about and ultimately I was hobbling and losing my ability to maneuver up and down, let alone walk. I was seen by a PA in my PCP office. A hip x-ray was done, as well as labs for inflammation. I do not have arthritis but I do have calcium deposits, but the PA thinks that there is more to my pain. I actually tested for Covid which was negative because I ache from head to toe and feel just plain lousy. I'm just finishing up a 6 day Medrol dose pack which helped the pain immensely. I've been referred to Rheumatology because the PA is inclined to think that it is it PMR. She recommends that I start Prednisone to keep ahead of the pain. I'm not real jazzed about that. I'm inclined to wait for the definitive diagnosis from Rheumatology. The Rx. is there for the taking, if need be. Tonight I take the last Medrol. I walked about a mile today and I regret to say that I'm feeling slight twinges again. It's been so nice to be comfortable and energized.
I'm hoping that some of you might have had similar experiences with your first flare and that you were uncertain the best strategy. BTW I haven't had much discomfort in my shoulders. Along with my thigh creases, my inner thighs made me feel that I had overdone splits. Other than yoga, this 73 yr old hasn't worked that area in years. Eventually my outer hips talked to me too. I really thought OMG, this feels like it's here to stay. I was frightened. I want to get out in the garden and continue my 1-3 mile walks. Just that. No marathons.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for villager @villager

Thank you for your insight. Is there any known downside to splitting the dose? Possibly insomnia, but anything else to look out for? When you started titrating down from 15mg were you completely symptom free or do you tolerate some pain and begin lowering the dose?

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@villager
I split my dose and had no problems. I did 50/50% am and pm.
I also, did not drop more than 10% each time I tapered.
it gets harder with lower dose, so I split pills ( Amazon pill splitter)
Did not tapper until pain free at least a few days.
Your journal and body will tell you how and when. “They” know more than the dr.s

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Thank you. I appreciate your insight from actual experience. Just trying to balance what the experts say vs. real world patients. The truth is in there somewhere.

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Profile picture for villager @villager

Thank you. I appreciate your insight from actual experience. Just trying to balance what the experts say vs. real world patients. The truth is in there somewhere.

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@villager

Real world patients have a wide variety of experiences. The doctors are almost universally in agreement and they want their patients off prednisone as soon as possible.

It is possible for the truth to come from both sides. You need to learn and listen to both realms.

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Profile picture for villager @villager

@johnbishop
I so appreciate your reply. I’m just struggling to understand all of it. If the pain/stiffness does not resolve on 20mg, how long do I wait before trying 25mg? I am keeping a journal of how I am feeling each day. Trying to understand what types of exercises or stretches are helpful or harmful. I’ve ridden a Schwinn Airdyne and a recumbent bike for years. I would think they would be safe since it is not weight bearing.

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@villager
Hi from Canada,

I was just diagnosed in November and am tapering down as per my rheumatologist. I find warm yoga is amazing for me ( have done regular yoga for over 20 years). Also warm water- look into whether there is a therapy pool near you. My range of motion is so much better in the pool. They have classes where I go and they are so good. We do exercises on a pool noodle- it's crazy all of the exercises we can do! Good luck!

Joan, from sunny Alberta

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