PMR Case Study with Remaining Questions as of 09-04-2025

Posted by brasada9 @brasada9, Sep 4 12:19pm

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?

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

In reply to https://connect.mayoclinic.org/comment/1386884/

The only experience I've had with reducing prednisone withdrawal side effects was on my initial taper when I was determined to speed up the reduction schedule given to me and had new pain at 8mg as a result. The solution for me was to increase by 1mg and do the taper more slowly. That's obviously not going to help you.

I don't know what to suggest for you. If your doctor managed your fast taper, they would have known the pain and inflammation would likely return. What is their strategy for managing your pain, and are your inflammation levels still being monitored?

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I may have missed something but this sounds like you still have PMR, and that may be the primarily cause of your existing issues and not steroid withdrawal. One major factor is that the CRP is still reasonably high and in the absence of any other sources of inflammation, then that is a good indicator that PMR is still very much active. If that is the case then you are effectively managing your PMR symptoms without the benefit of prednisone, which is certainly challenging but some people choose that path.

The taper you have undertaken was exceedingly fast and I am wondering what advice you received that your
PMR had ceased and prednisone was no longer needed. As others have mentioned, the steroids don't cure the inflammation caused by PMR they just reduce the symptoms. If the PMR hasn't burnt itself out then removing the steroids will lead to the inflammation, pain, lethargy etc building up again over a fairly short period of time.

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Thank you for all of that information! Is amazing how quickly it comes on. Life changed in one day.

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Profile picture for gmdb @gmdb

I may have missed something but this sounds like you still have PMR, and that may be the primarily cause of your existing issues and not steroid withdrawal. One major factor is that the CRP is still reasonably high and in the absence of any other sources of inflammation, then that is a good indicator that PMR is still very much active. If that is the case then you are effectively managing your PMR symptoms without the benefit of prednisone, which is certainly challenging but some people choose that path.

The taper you have undertaken was exceedingly fast and I am wondering what advice you received that your
PMR had ceased and prednisone was no longer needed. As others have mentioned, the steroids don't cure the inflammation caused by PMR they just reduce the symptoms. If the PMR hasn't burnt itself out then removing the steroids will lead to the inflammation, pain, lethargy etc building up again over a fairly short period of time.

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Tx, I take your comments most seriously. I will take with doc and reassess. I appreciate taking time and offering your safe advice.

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After 7 months on Prednisone, and down to 7.5mg per day, I had to switch off of Pred because my ophthalmologist said the Pred was giving me Macular Degeneration. He suggested Hydroxychloroquine and my Rheumatologist agreed. Switch over a months period to 200mg HCQ and then reduced over a one year period. Been off of meds for over a year now and no PMR symptoms. (However, at age 76, I have lost about 50 yards with my driver. Switching to the front tees was the most humiliating part, but I am back to shooting in the high 70’s).
Side note: I believe taking Simvastatin was the biggest mistake of my life. Absolutely believe Statins cause PMR.

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Profile picture for hosers2 @hosers2

After 7 months on Prednisone, and down to 7.5mg per day, I had to switch off of Pred because my ophthalmologist said the Pred was giving me Macular Degeneration. He suggested Hydroxychloroquine and my Rheumatologist agreed. Switch over a months period to 200mg HCQ and then reduced over a one year period. Been off of meds for over a year now and no PMR symptoms. (However, at age 76, I have lost about 50 yards with my driver. Switching to the front tees was the most humiliating part, but I am back to shooting in the high 70’s).
Side note: I believe taking Simvastatin was the biggest mistake of my life. Absolutely believe Statins cause PMR.

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They do not know what causes it. I guess its lucky they have found a treatment. Although as with most diseases the treatment is almost worse than the disease. I have seen dozens of reasons after following PMR on various sites for the last 3 years. Stressful event, over exercising, a surgery, a drug, on and on. Mine was 2 weeks after my reaction to a covid shot. So naturally thats my theory. I had a reaction to atorvastatin almost 20 years ago and avoided ever taking a statin again. Some sort of perfect storm seems to have hit all our immune systems. Lucky us.

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Profile picture for hosers2 @hosers2

After 7 months on Prednisone, and down to 7.5mg per day, I had to switch off of Pred because my ophthalmologist said the Pred was giving me Macular Degeneration. He suggested Hydroxychloroquine and my Rheumatologist agreed. Switch over a months period to 200mg HCQ and then reduced over a one year period. Been off of meds for over a year now and no PMR symptoms. (However, at age 76, I have lost about 50 yards with my driver. Switching to the front tees was the most humiliating part, but I am back to shooting in the high 70’s).
Side note: I believe taking Simvastatin was the biggest mistake of my life. Absolutely believe Statins cause PMR.

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Wow! Great information. We need to figure out a way to enhance driving distance. Lol! Did you ever have issues with dizziness and putting? That is my chief concern with golf. Tx.

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brasada9. It is possible that your dizziness is a side effect of Cyclobenzaprine. A google search of this drug shows that that is one of its primary side effects. The idea suggested by some on this site that it is a result of low functioning adrenals is also a strong possibility.

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What do the Drs say about your ANA results being abnormal?

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I was Dx-ed with PMR in early 2020. It took a year for me to get a diagnosis. I am still dealing with residual associated problems. My case came on as a result of a vaccination so I will always be careful about the timing of all future vaccinations. My guidelines are I must be off all non-maintenance drugs for at least 30 days. Non-maintenance drugs are things like a one-week course of antibiotics for an infection, or an antiviral for a mouth ulcer, or eyedrops for an eye problem. My maintenance drugs are my thyroids and blood pressure pills - that' s about it. I will only take one vaccination at a time, I never doubled up pre-PMR so why do it now? And I wait 2-4 weeks between vaccinations depending on work works best at the time. Last year I needed Flu, Covid and RSV this year only Flu and Covid. If you read up on what vaccines do to your body to built immunities it only makes sense to take a break between vaccinations.

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