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Possible PMR
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.
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Good time to test inflammation tests off prednisone, We’re you found to have
abnormals on first tests?
Response over time with an adequate dose by your rheumatologist is
helpful with clinical diagnosis. Do you have any skin problems that have been
diagnosed. Have you had skin biopsies to look for small fiber disease?
It will be interesting to finger if the steroids affect your neuropathy
symptoms. Keep your doctors working as a team and monitor all of your results. Rheumatic and neurological diagnosis can be a long journey.
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2 ReactionsSorry for auto typos. AI!
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1 ReactionI agree with seniormed. Not everyone will test positive for the ESR and Sedrate but its a good start. Testing IL-6 can be done but my insurance would not cover it. My sedrate and crp were normal but my HS-CRP was off the charts. No one but Rhumy thought that had anything to do with PMR but further reading I found it does. The problem as seniormed mentioned is the Dr will want to rule out everything else it can be a long painful process. Everyone seems to be different with where their pain started but eventually for me it moves everywhere. The fact that prednisone does work is helpful but it can treat any inflammation. Find a good Dr and keep after it.
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2 ReactionsKeep a daily journal of pain level, meds, exercise
With inserts of medical visits and tests in different colors.
It helped me
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3 ReactionsFirst time on this site. 73 yo just diagnosed with classic clinical presentation and SED rate of 74 and CRP 120. Crippling pain and stiffness. Started on 20mg 5 days ago. Dramatic relief in one day. I still have mild/moderate pain and stiffness in morning. Does this mean I need a higher dose or will symptoms resolve over time? Do symptoms have to be completely gone before tapering can begin? I would imagine. Still under care of PCP until I can see a rheumatologist. After reading many comments, looks like this is going to be a life long journey.
Welcome @villager, I think it's good news that you had dramatic relief in one day. If you take your prednisone dose in the morning, I think it's normal to feel some aches/pain/stiffness the following morning before your next dose. I don't think there is a set rule for when to taper to a lower dose since we are all a little different. If you are not already keeping a daily journal of your level of pain and the dosage for the day, I would suggest starting one. My rheumatologist started me with a proposed tapering schedule but told me not to taper down to the next lower dose if my level of pain was not acceptable. For me, acceptable was less than 2 on a scale of 1 to 10.
You might want to take a look at a discussion started by @dadcue here:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
One thing that I had to be careful of was overdoing my daily exercise or activity which sometimes made my aches/pains worse the next day. My PMR is now in remission but there is always that chance that it will flare up again. The first time I was diagnosed it lasted 3-1/2 years before I was able to taper off prednisone. The second time I was able to taper off in 1-1/2 years but I made a few lifestyle changes after my first time with PMR, mostly losing a little weight, eating healthier with much less sugar and staying as active as I can. Have you looked into any lifestyle type changes that might help with the PMR?
@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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1 Reaction@villager - Hoping you don't have to wait too long before you can see a rheumatologist. There are a few other discussions you might want to check out before your appointment with a rheumatologist. Here are a couple:
-- First visit rheumatologist tomorrow-questions: https://connect.mayoclinic.org/discussion/first-visit-rheumatologist-tomorrow-questions/
-- First meeting with Rheumatologist for PMR, need suggestions:
https://connect.mayoclinic.org/discussion/first-meeting-with-rheumatologist-need-suggestions/
The Arthritis-Health site has some good strategies for copying with PMR here including some exercises and stretching: https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr.
I try to use my Teeter FreeStyle Elliptical Cross Trainer 30 minutes or so daily for my overall health but mostly because I can't walk very much or very far due to back issues. I think riding the Schwinn Airdyne is a good thing unless you over do it like I tend to do sometimes which did cause me to ache a little more the next day.