PMR flare or something else?

[Viola1]

I posted a couple weeks ago about pain and stiffness in my hips, shoulders, and hands/wrists, starting when I reduced to 3 mg from 3.5 mgprednisone using DSNS (diagnosed in 2018 PMR/GCA) and also had a great deal of stess and activity. The rheumatologist thought it was carpal tunnel and trochanter hip bursitis. Recent blood work showed slight increases in ESR and CRP, and low Cortisol level. Nerve conduction test showed carpal tunnel in both wrists.

Thanks to PMRPRO's gentle prompt that these were PMR flare symptoms, and after contacting the rheumatologist, I increased to 10mg for two weeks, and also continued Aleve (NSAID) on some days to test out what was helping. I had 75% improvement on the increased pred and 90% improvement using both 10mg pred and Aleve.

I dropped to 5mg pred after the 2 weeks at 10mg, and had a rapid return of significant pain and stiffness in all areas. Adding Aleve helps get me to about 80% improvement.

Any thoughts about what this might be and what to do? I'm contacting the rheumatologist now to see what he thinks.

[PMRpro Ambassador]

Interesting that Aleve improved the symptoms.

If the symptoms are also in the shoulders - where does he get the concept of trochanteric bursitis? Not saying it isn't - and the Aleve would possibly help that a bit - but I'd be inclined to the idea the bursitis and the CT is also part of the PMR. Cortisol is likely to be low since you are still at 3mg of pred and for some that is plenty to suppress cortisol.

But with the degree of improvement the Aleve achieves - think you have to consider this might be something on top of the PMR. But alt that stress is probably still having an effect - it does hang on.

[Viola1 in reply to PMRpro]

So maybe I need to bump back to 10 mg until symptoms are under control?

[PMRpro Ambassador in reply to Viola1]

Not sure you need to go all the way up - even 1mg can be the difference between not OK and OK. Someone I suggested that to recently posted in the last few days to say just adding 2mg had been plenty to get things under control, saving 3mg per day. Always worth a try.

[Viola1 in reply to PMRpro]

OK - taking another 1 mg now.

Does it mean anything diagnostically that all the areas on my hips and shoulders that are painful when I move are also painful to the touch?- side of hips; halfway down my butt, top of shoulders.

Thank you so much for your guidance!

[PMRpro Ambassador in reply to Viola1]

I don't know. I had that sort of experience too in the early days, the skin was sore, The outer hip does get very tender with bursitis, The trapesius (the wide triangular muscle across the top of your shoulder) can be exquisitely tender when it is in spasm.

healthline.com/health/shoul...

[Viola1 in reply to PMRpro]

I took an extra 1 mg at about 5PM yesterday with Aleve in the morning and feel significantly better today. Fingers crossed...

The Healthline info is amazing - 3D modelling, clear descriptions, and exercises with demonstrations! Thanks, I haven't been on that website before.

[PMRpro Ambassador in reply to Viola1]

I've used it a few times - I liked the clarity of the images! All the others haven't heard that a picture saves a thousand words!!!

[PMRnewbie2017]

My experience may help or even muddy the waters. I went to Rome in April, loads of walking and stairs. Thighs started to really hurt. I was taking 1.75mg Pred. Back home continued very slow tapering via 1.5mg, 1.25mg to 1mg. Thighs never really improved and 600mg Ibuprofen at night meant i woke pain free and was fine all day until 4pm in the afternoon. I carried on like this for about a month. Two weeks ago I was at the theatre and could barely climb the stairs to my seat after the interval. On the way home I started to feel unwell. That PMR inflamed,sick, unwell feeling which is hard to describe. I took 7.5mg for 3 days and after 24 hours I was brilliant. Thighs perfect. My ESR and CRP were slightly raised in March but i developed a bad cold the day after the test so i put the increase down to that. I now think my PMR was resurfacing very slowly and despite NSAIDS not working in full blown PMR, my night time dose was enough to camouflage what was really going on. Once my PMR "bucket" was full it was obvious to me that i was flaring. I'm now back at 4mg. I had put soreness down to myofascial pain syndrome, DOMS, low cortisol, old age as I really did not think my PMR was still active. It is, albeit at a very low degree of activity.

[Viola1]

Thanks, this is very helpful. My hip pain started after a backpacking trip with my family in the Sierras late July, then way overdoing it through August, and being at too low a dose. And then, being in complete denial that the pains could be PMR related until PMRpro's gentle prompt.

[BarbB]

Bilateral hip and shoulder pain are PMR symptoms. Imaging has shown that often it is the bursa in these areas that become inflamed with PMR, so those symptoms sound like classic PMR.

Prednisone suppresses natural production of cortisol by the adrenals. When tapering off cortisol levels can be below normal. Cortisol is your body’s natural anti-inflammatory hormone and when low, other parts of your body may develop pain and inflammation that is normally suppressed -mildly arthritic joints, carpal tunnel, etc.

Sounds like you are having both a flare of PMR and some withdrawal inflammation from low cortisol/adrenal suppression.

[PMRpro Ambassador in reply to BarbB]

"When tapering off cortisol levels can be below normal. Cortisol is your body’s natural anti-inflammatory hormone and when low, other parts of your body may develop pain and inflammation that is normally suppressed -mildly arthritic joints, carpal tunnel, etc."

But if you are on pred which is suppressing the cortisol - the pred is a far more effective antiinflammatory than cortisol.