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PMR Case Study with Remaining Questions as of 09-04-2025
Background
1. PMR 40 -20-15-10-7.5-5-2.5-0 mg/daily tapering over 5 months, 77-yr old male in great shape. PMR triggered overseas dive trip (Malaysia) unexpectedly and exceedingly fast and unrecognizable. Total disruption of routine activities. Could not get out of bed with major pain in shoulders, biceps, deltoids, buttocks, hips, back, wrists, tingling in right toes eliminating ability to push up from bed, floor, chair or table.
2. Pain - Originally neck, back, shoulders, deltoids, hips, thighs, buttocks, overall leg cramps. Feet, tickling legs, ankles, feet and toes mainly right side
3. Pain tapering - dizziness, both shoulders ache
4. Post PMR - dizziness, shoulders, deltoids, buttocks (not severe and managed with 2 mg Tylenol daily)
5. Muscle weakness of 20 to 30% loss
6. Water retention 10 to 15 pounds, slowly losing with help of 25 mg daily hydrochlorothiazide (HCTZ) diuretic for 10 days
7. Fatigue - 50% energy loss, coming back very slowly
8. Golf - indicator, lost 30 to 40 yards distance, added 10 strokes to score usually unable to complete round due to dizziness. Peloton bike - unable to use for months, when returned 30 to 40% of normal (baseline) wattage expenditure.
9. Attitude - must find a way, but also realization age and life may be different henceforth.
10. Reading and fatigue - fall asleep often while reading
11. Health status prior - normal. CBC and other blood test markers abnormal on inflammation across the board and did not reduce (see below).
12. BP: 122/62, Resting Pulse: 66, O2 Saturation: 97%
13. Predisone taper over 8 weeks (20 to 2.5 to 0 mg daily), full stop now
14. Predisone withdrawal symptoms (see Questions below)
Medications
1. Prednisone (5 mg tablets, max 8 daily)
2. Tylenol (500 mg tablets, max 6 daily)
3. Cyclobenzaprine Hydrochloride (10 mg, max 10 mg daily)
4. Meloxicam (15 mg, max 15 mg daily)
5. Hydrochlorothiazide 25mg, max 25 mg daily)
Abnormal Lab Tests
1.CBC with Auto differential:
• RDW-SD: 52fL (high)
• # Immature Granolocytes: 0.07 K/uL (high)
• Lymphocytes Absolute: 0/9 k/uL (low)
• Neutrophil% (Auto): 75.2% (high)
• Lymphocyte% (Auto): 11.9% (low)
2. Sedimentation Rate
• 36 mm/hr (high)
3. ANA, Reflex
• ANA Screen: Positive (Abnormal)
4. ANA Titer Reflex Panel
• ANA Titer: 1.40 (high)
• ANA Pattern: Nuclear, Homogeneous (Abnormal)
3. C-Reactive Protein
• CRP: 76 to 34.30 mg/L (high)
Lingering Questions or Comments Requested
1. Fatigue (lethargy) still exists, how to reduce/eliminate?
2. Muscle loss -resume regular routines?
3. Shoulder pain - exercise routine helping or hurting and ongoing or aggravating pain?
4. Sleep - 1.5 to 2 hrs max sleep period all night, wake up, pee back to sleep. Tried, not drinking liquids, drinking liquids, reducing liquids, nothing seems to work?
4. Apprehension for good health and handicaps of others (only positive for this journey).
5. Appreciation for good medical access, but major delay in scheduling visit with rheumatologist specializing in PMR. However, Primary Care Physician consulted with the rheumatologist to confirm approach.
6. PMR is “not one size fits all” and requires medical advocate (self or others) to ask questions, do research and provide support. Realization that PMR is not a candidate for an instantaneous fix, but may take weeks, months, years or not render a total repair.
PMR meds introduce a range of side effects that must be managed depending on meds.
7. Underlying cause may or may not be discovered. Relapses are uncertain. It appears one is never rid of the disease. Have had medical and non-medical "experts" suggest, viral, parasite, and bacterial infection that triggered auto immune system activation in some on our international trip, but gastrointestinal reactions in other occurred for the body to attack the virus or infection.
8. Markers may not be reliable in short term as they may be lagging indicators. Use personal body feelings also as indicators or progression, relapse or non-improvement. Medical experts will disagree. Seek help from rheumatologist and Primary Care Physician that know you and your normal baseline body indicators.
9. Do not mix alcohol or other non-prescription drugs without investigating contra indications.
10. Physical exercise is difficult, but continuation is most helpful.
11. Dehydration aggravates the disease. Stay hydrated.
12. Research supplements and foods are needed to counteract the nasty results of Prednisone, e.g. bone strengthening calcium and vitamin D, bowel regularity and composition. Do not take other NSAIDs (Aleve, Advil, Motrin – ibuprofen anti-inflammatory drugs. Tylenol (Acetaminophen) is okay.
13. Establish a plan A and B for recurrence of symptoms of PMR and have meds on hand to address.
14. Vaccines – when to take flu, Covid, RSV after Predisone withdrawal?
15. No mental degradation, no headaches, no memory issues other than dizziness, but still comes and goes, especially when focusing on short putts? How or when does this disappear?
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Thank you for sharing your journey.
You have said all that I have been going thru on my journey.
New people to PMR need to read this and know they too, are not alone.
My one question to you, have any of your drs. Recommended a biologic like Kevzara? My Rehum just wanted me off prednisone, all but screamed at me. At no point did he say “it will help you get off prednisone “. That’s what I needed to hear since he knew I won’t even take an aspirin for a headache. After we crossed that bridge my progress had been GREAT.
Good luck
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1 ReactionPMR is not considered a muscle wasting disease. Lack of activity and age can be. Like you I was in good shape prior and was a gym rat. I have lost 30-40% of my strength from age 68 to 73 current. All the things you describe are exactly the symptoms of classic PMR. I am post PMR of 3 years. I put my PMR in remission fairly quickly - 6 months. I am still fighting the fatigue, light headedness, high blood pressure, high cholesterol. I consider myself pretty much back to normal. I did not end up with any other AI conditions. I did develop a gastritis that is troublesome. I had scope work done that found nothing unusual. Good luck on your journey. Keep exercising, eat right and live the dream 🙂
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3 ReactionsI could comment about some of your questions, but first I want to check, what is your current dose of prednisone? Have you tapered off of it? When did you start treatment?
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1 ReactionI have not yet taken Kevzara, although I asked. The doc's answer was stay the course and tolerate small aches for a few days to a week and then discuss. I agree with you, get me off Prednisone as fast AND permanently. Next week I will follow up on Kevzara, if needed. Tx.
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1 ReactionTx, total taper off Prednisone after 4 months Been at 0 mg for 4 days now, but with withdrawal symptoms as described. Tx for input.
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1 ReactionOk, here is my response to some of your questions:
1. Fatigue (lethargy) still exists, how to reduce/eliminate?
It can take a few weeks or months for your adrenal glands to recover from prednisone. I'm not sure there is anything you can do to hurry that along.
2. Muscle loss -resume regular routines?
I would suggest you start at a lower level than before you got sick, and then see how you handle that. If it doesn't wipe you out, you can build up from there.
3. Shoulder pain - exercise routine helping or hurting and ongoing or aggravating pain?
You can try to treat it yourself with exercise and OTC medications like ibuprofen, Tylenol, etc, but you might need a doctor's advice and maybe physical therapy for that. Stopping prednisone allows the normal aches and pains of aging to come back. Whenever I have a problem I can usually find good advice in YouTube videos about how to take care of the problem.
4. Sleep - 1.5 to 2 hrs max sleep period all night, wake up, pee back to sleep. Tried, not drinking liquids, drinking liquids, reducing liquids, nothing seems to work?
I peed a lot of night when I was on high doses of prednisone, but since you're off of that, it's probably a prostate issue. That's something else you might want to check with a doctor. Have you had your blood sugar checked? That can also cause problems.
12. Research supplements and foods ...
For strengthening bones, besides vitamin D and calcium, you should also take vitamin K2. I take a single pill that has all 3.
14. Vaccines – when to take flu, Covid, RSV after Predisone withdrawal?
I'm not sure if the fall vaccines are even out yet in the US. I'm planning on at least getting the Covid and flu shots around the first of October, even though I take Actemra. I plan on getting them at least 2 weeks apart so as to not hit my immune system with too much at once.
15. No mental degradation, no headaches, no memory issues other than dizziness, but still comes and goes, especially when focusing on short putts? How or when does this disappear?
The dizziness could be another sign of adrenal insufficiency, like in your item number 1, fatigue. Hopefully it will go away in a few weeks or months.
You were lucky to only have been on prednisone for 5 months. I hope your PMR stays inactive.
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2 ReactionsOne note on OTC meds…..not all are compatible with Prednisone.
My Rehumy put me on “Tylenol for Arthritis” which helped during the tapering in a few cases. “As needed”.
I'm finding your notes hard to follow. You say in "Background":
"1. PMR 40 -20-15-10-7.5-5-2.5-0 mg/daily tapering over 5 months"
and
"13. Predisone taper over 8 weeks (20 to 2.5 to 0 mg daily), full stop now"
It's not clear which of those tapers you followed, or both at different times? In any case, both tapers are unusually fast and likely to cause a flare - a return of the PMR - or to cause significant withdrawal symptoms which are similar to PMR symptoms. Prednisone is not curative, it just controls inflammation and pain while the PMR runs its course.
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3 ReactionsTx Jeff, great responses duly noted. I appreciate taking the time. Take
care.
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1 ReactionTx, 2 takers, one initially to get down and then another to rid my system of Prednisone due to all side effects. Yes, incurring withdrawal symptoms now, but no worse than Prednisone side effects. Any ideas how to reduce withdrawal side effects or only time will tell? Tx.