I had my first Rheum appt today to be told I might not have PMR. According to the Consultant my CRP wasn't as high as he would expect it to be and I should have had a night and day reaction to Pred. It took 3 days to make a difference...he said a great many people notice a difference within 2 hours of taking Pred 🙄 I asked if it wasn't PMR what it could be....he said frozen shoulder or rotor cuff. I had shoulder girdle pain (probably the worst pain I've ever had) for some 6 weeks prior to being diagnosed which I'm pretty sure we're neither a pair of frozen shoulders or rotor cuff injuries.The upshot of the appt is he wants me to drop 1mg a fortnight and will see me again in 8 to 10 weeks.
Am I right to feel aggrieved/annoyed?
Lesley
P.S. he described PMR as pain in the bursas.
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Badlass
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Not everybody has high markers with some not even getting off the normal level. Not everyone gets the magic in a few hours, with some needing a couple of weeks. This is provided the dose is high enough. Your bio suggests you started on 12.5mg when 15mg is the usual bottom starting dose with some people needing 20-25mg.
What effect has the Pred had, what little you’ve been given? What is their day and night comment based on?
You might not have PMR but to me the reasons for deciding that you don’t are a bit flakey!
Sorry, my bad, I was started on 15mg. After the initial 3 days it was like I had my life back again. Prior to that I couldn't turn over in bed or get dressed unaided. The Pred has made things so much better. The drop from 15 to 12.5 was a bit too much so my Dr involved rheum (hence their interest) who suggested coming down more slowly. I got down to 9mg and got what I think was costochondritis and went back up to 10mg which didn't help so was about to come back down to 9mg.
I was on 15mg for one month. The drop down to 12.5 was too much in a oner so went back to 15 for another 2 weeks then dropped 1mg every 2 weeks to get to 10mg then was to proceed at 1mg per month.
Going at that speed would be too fast for many or even most, especially the 2.5mg from 15mg. . It is not unheard of for Rheumy’s to reduce people fast, cause a flair and then say the Pred isn’t working. The point of Pred reducing is to slowly find the lowest level that covers the inflammation made by your autoimmune activity. 1mg every 2 weeks doesn’t give you time to see if the new dose is going to stick. If you make the drop doses smaller you can finely tune your required level. Under 10mg, 0.5mg per month is safer and gives your adrenal glands, which have been suppressed up to then, a chance to come back and not cause you bad fatigue. That last bit is also an aspect that is forgotten by some docs.
Very right. What a load of tripe! Bet he doesn't have many PMR patients!!!
I had a day and night reaction in 6 hours, piglette was somewhat longer - next day I think. But we are quite unusual and if that is his criterion for PMR diagnosis, there wouldn't be a need for this forum because most of us wouldn't be diagnosed with PMR!!! Three days is still faster than most, especially if you were started at 12.5mg which is very low, and I never had markers that were out of normal range - my CRP NEVER budged except on a day I had some nasty atrial fibrillation going on and my ESR bumbled along at 16-18 during a dreadful flare when I couldn't move. My normal ESR is low single figures.
It can involve pain in the bursae but not only and it isn't uncommon for bilateral frozen shoulders to be diagnosed but turn out to be the start of PMR.
As Snazzy says - second opinion or have you got a sensible GP?
I would feel aggrieved AND annoyed but that’s with what I know now through this forum.
I don’t think your rheumatologist knows much about PMR even though he professes to know “a great many people” with the condition.
I agree with Snazzy that you need a second opinion. A good rheumatologist would be referring you for tests (X-ray, ultrasound scan……) to rule out conditions that can mimic PMR. It seems to me that he is relying on guesswork. Definitely a second opinion is needed. Have a look here and please remember it’s your body and your health.
Thank you so much for your responses. I was very despondent after the appt today. I feel aggrieved for myself and my GP. She contacted rheum for advice, they didn't say to her oh we think you've misdiagnosed your patient. They hauled me in for an appt to break their news instead. The consultant didn't even tell me what alternative diagnosis he might have until I asked him twice and with no investigation to underscore his "theory". My partner was with me today and feels the consultant already had his decision made before he even saw me.
My GP is lovely, unfortunately f2f are like hen's teeth at the best of times...but I'm going to try and get one to discuss this with her. Hopefully 🤞🏻she'll stick to her guns and I can taper properly.
If you want a proper diagnoses, be listened to and you can afford it....please please see Prof Rod Hughes , consultant rheumy.
After a year of messing about with a GP with the best of intentions, numerous flares, messing about with pred & other meds, Prof Hughes has got me back on a positive path, with a proper plan with a definate "yes you have PMR"
He understands PMR better than anyone and understands that GP's & othet consultants can get things badly wrong.
It is worth every single penny & travelling to see him.
Do not lose weeks & months to pain, upset & frustration with anyone else. He is in my opinion the best thing since.....well....being diagnosed with PMR🤗
He sounds like a a bit of an idiot. I have a torn rotator cuff, it did not get helped by my pred. And I went through similar with my rheumy..but after he tested for everything else under the sun, he acquiesced to the PMR diagnosis..in the end what does it matter what it's called? I definitely respond to Pred , so..it's something inflammatory. And btw, I needed 30 mg for a month to get it really under control and feel normal again. Atypical I know, but we are all different.
Many cases of PMR start with frozen shoulders, especially in younger people (which you are to have PMR). They can be a diagnostic clue. It seems you have seen a consultant who doesn't know much about PMR, sadly there are still too many. You need more tests. For starters I would ask for ultrasound scans on your shoulders and also possible a PET-CT scan which show areas of inflammation in your body, as PMR typically has particular patterns such as shoulders and hips. I had frozen shoulders but nobody suspected that I also had PMR as I was only 50. Frozen shoulders typically last about 3-4 months and I protested there must be soomething wrong if I still had them after 18 months but kept getting shrugged off.
we ended up seeing a private rheumatologist and he said he thought my hubby had been misdiagnosed and said he thought he had psoriastic arthritis, referred to Nhs consultant for MRI, hand and feet X-rays and bloods, gave hubby some other a inflammatories whuch didnt touch the pain and made him sick. Had letter to say tests all back doesn’t have PA, hubby really bad so back to GP back on steriods. No further forward!!
When I was eventually referred, the rheumy I saw decided at the first visit it wasn't PMR and PsA was obviously what he thought - never had any skin problems in my life - but ordered a load of tests, repeat appointment in 8 weeks and gave me 6 weeks of a pred taper to help me get through a long business trip to the USA. Within 6 hours of the first 15mg I had a minor miracle - virtually pain-fee muscles and I could move freely for the first time for nearly 5 years. Within 6 hours of missing the first 5mg dose, I was worse than I had been before pred. At the repeat appointment I didn't see him but a GP registrar who repeated the first appointment action for action. And then said he'd not got a clue and fetched the boss. Who repeated his inflammatory arthritis mantra - wasn't in the least interested in my response to pred and the timeline. For REAL experts, the speed and degree would have pointed to PMR, not an arthritis. Sixteen years later there is absolutely NO sign of inflammatory arthritis damage.
But you ARE further forward - elimination of a diagnosis is part of diagnosing PMR. It is a diagnosis of exclusion since there is no definitive test for PMR.
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1st Rheumatologist appointment and instructions etc. 
Hello everyone!
Frozen shoulder?
not happy with unknown
CRP 2, still in pain. 
