Any advice please?: I’m confused. I was diagnosed... - PMRGCAuk

PMRGCAuk

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Any advice please?

Mazeyq profile image

I’m confused. I was diagnosed with PMR in January when I finally rang the GP after months of pain getting progressively worse. That was diagnosed because I could barely raise my arms from my sides and had bad pains in my shoulders, upper arms and hips and could hardly get out of bed in the mornings. I was put on 15mg Predinisilone which took a couple of days to control the pain but did work. GP advised going down to 12.5mg after 9 weeks which works some days but not others. She has now decided that maybe it’s not PMR after all because the inflammatory markers are still higher than she would have expected and because the pain I have now can be pretty much anywhere but most often in my right wrist and my knees. On the days that I have pain, sometimes it gets worse after I’ve got out of bed. The GP says none of these things are symptomatic of PMR.

The GP has referred me to a rheumologist but has otherwise pretty much abandoned me! I’ve been trawling this amazing forum to try to find out what is typical and it seems that many have very varying symptoms and degrees of pain,

I suppose I’m a bit fazed by the sheer amount of information here and could really do with some advice about anything specific I should ask the rheumatologist when I see her apart from giving her the history of the progression of whatever It is.

Any suggestions would be much appreciated. Thanks in advance and thanks for being such an incredible resource.

19 Replies
PMRpro profile image
PMRproAmbassador

PMR is not the actual illness - it is the name given to a set of signs and symptoms that are due to an underlying disorder which in our case is some form of autoimmune problem and probably related to giant cell arteritis and large vessel vasculitis. There is a range of other potential causes which need to be ruled out before the diagnosis of PMR is made - but often GPs fail to do this, probably because of lack of knowledge and access to the tests and imaging required.

She seems a bit out of date - while 15mg has been the dose for some years, the most recent recommendations say the lowest effective dose on the range 12.5 to 25mg. If they don't clear out the inflammation with enough pred to start with - the markers may not go down. The pain being worse after getting out of bed would rule out ankylosing spondylitis though - movement improves that, Where in particular is the pain that worsens once you get up?

I had wrist and knee pain and that took some time to clear - all tendonitis and bursitis which took a few months while the other stuff was better quite quickly. I am by no means the only one. However - some doctors do have very narrow and restricted ideas about how PMR can present.

Mazeyq profile image
Mazeyq in reply to PMRpro

Thanks for the speedy reply. Tbh I don’t think she knows much about PMR at all, she really couldn’t give me much info and wasn’t able to explain the cause of the pain. She didn’t seem to regard it as anything long term.

It’s usually my hips and knees that start to hurt once I’m up but sometimes my shoulder and upper arm too. It doesn’t last too long, generally until about midday then, on a good day, I’m pretty much ok.

Think maybe I’m probably just going to have to wait and see what the rheumatologist has to say. It’s been a surprise and a comfort to see so many other people in the same boat, like being in an exclusive club!

PMRpro profile image
PMRproAmbassador in reply to Mazeyq

"She didn’t seem to regard it as anything long term."

Oh dear! Half of patients with PMR have it for longer than 6 years - I call that long term! In fact - although 1 in 5 get off pred in under a year and by 2 years that rises to a third - even that counts as long term in medical books. Long term pred is anything in excess of a couple of months, PMR NEVER goes away in that time - having the symptoms for more than 6 -8 weeks is a criterion.

I suspect your pain after getting up may be the new lot of inflammation briefly outstripping the antiinflammatory effect of the pred which is still ramping up. The sites of pain you mention are typical places for more intense PMR symptoms and ones that improve by rest - not standing or using your arms. As soon as you are out of bed you do both, even just getting dressed. I was (almost) fine for about 10-15 minutes after getting out of bed and if I got dressed quickly it was possible. Once the muscles had cooled down the pain started and the stiffness got worse. I kept going for 5 years of no pred by getting dressed in my swimsuit and t-shirt/jogging bottoms and heading for the warm swimming pool at my gym for an aquafit class - I could only get there by driving, walking or public transport wasn't an option. Aquafit and a Pilates or Iyengha yoga class afterwards meant the pain improved and the stiffness was manageable. Once you can move, it does get better - stretching in a warm shower often helps too.

It is often discussed on here about taking pred before bed or at 2-3am (the ideal time accroding to research) - both can solve the morning pain - or splitting the dose which can also make mornings better without waking in the middle of the night.

Mazeyq profile image
Mazeyq in reply to PMRpro

It’s reassuring to hear your experience and the ways of coping. What you describe on getting out of bed is pretty close to what is happening to me. I take the dog out every morning, start off crawling and the pain and stiffness eases after I’ve walked for a while. It keeps me sane too!I’m going to try taking the Pred before bed and see how that goes. Thank you so much for your help.

I think the first thing is for the rheumatologist to diagnose whether you have PMR or not. I must admit from what you say the symptoms sound very much like PMR to me, but I could be wrong. If you have never been on a high enough dose to clobber PMR on the head your inflammation markers may not had the chance to reduce. Do you know what the results are? I now keep all that sort of info as I find it can be very useful.

Mazeyq profile image
Mazeyq in reply to piglette

Thanks for answering. My GP did rattle off the results but at the time I didn’t think to record or question them as she had given me no idea at all that I was likely to be in this for the long haul. Stupid of me but I live and learn!Think you’re right and will have to wait for a definite diagnosis.

piglette profile image
piglette in reply to Mazeyq

I ask for a copy from the receptionist.

Mazeyq profile image
Mazeyq in reply to piglette

Thankyou, I hadn’t thought of that!

Bcol profile image
Bcol in reply to Mazeyq

Morning Mazeyq, not adding anything medical to what the others have said, but in terms of your medical record/test results, if your doctors uses Patient Access then you can ask for your records to be added to it. You just need to complete a form and then, when you sign in your notes etc will be available to you.

Mazeyq profile image
Mazeyq in reply to Bcol

Thankyou Bicol. The surgery does use Patient Access. I had noticed I didn’t have access but didn’t realise it was something I had to sign up for so that info is really helpful. Until now, I haven’t had to use the surgery much so not very aware of the various tools!

Hello Mazeyq - My experience was a starting dose of 15mg was not enough to quell the symptoms and it was raised to 25mg which did the trick. Also I am wondering what time you are taking the pred. If it is after you get up maybe taking it at 3 to 4am would help. This is when the inflammatory substances are released into the system. PMR 3 years, presently 5mg pred. Also you can ask for a copy of your results.

Mazeyq profile image
Mazeyq in reply to Meggsy

Thanks Meggsy. It’s a steep learning curve. I’m going to try taking the Pred at night as see how that works x

Meggsy profile image
Meggsy in reply to Mazeyq

🤞🙂

Hi there, sorry to hear you are in pain. I can sympathize with GPs not being terribly knowledgeable and also washing their hands of us once they've passed us on to a Rhemy. This is totally my experience.I'm no expert but these are things that I have found helpful.....

1. Splitting my Pred dose rather than taking it all at once. 2. Taking one dose of Pred at 4am, with 2 x CoCodamol and Omeprazole to protect stomach. (then going back to sleep for 2/3 hours - I got used to this very quickly. )

3. Taking second dose of Pred with my evening meal to protect stomach.

4. When reducing Pred, do it very slowly over a 1-2 week period, and by only .5mg (so I would alternate the old dose and the new dose for 1-2 weeks before sticking to my new dose.

5. (And I have only just hit on this one) Only reduce your dose when you feel your body is ready. I had been slavishly reducing every 3 weeks as advised by my Rhemy, and usually had 2 bad weeks for every 1 not so bad - but no good weeks!! I now wait until I am feeling really quite comfortable (4-7 weeks) before starting the 2 week drop.

6. I find Co-codamol really help with the pain.

I hope this may be of use. Best Wishes.

Mazeyq profile image
Mazeyq in reply to Prof99

Thanks Prof99. I found that really helpful. Tried splitting the dose for the first time last night and, fingers crossed, it seems to have worked. It’s very comforting to know there’s so much support here, I really appreciate the input.

All the best to you x

PMRpro profile image
PMRproAmbassador in reply to Prof99

If co-codamol is really helping it does beg the question whether it is PMR pain - but there must be exceptions

jimcarlow75 profile image
jimcarlow75 in reply to PMRpro

Yeah, cocodomol doesn't help with my pain.

Prof99 profile image
Prof99 in reply to PMRpro

Yes my diagnosis is Enthesitis and PMR with a question mark!! The Co-codamol doesn't make the pain go away, but it takes the edge off it and makes me feel less fatigued with the discomfort. I worded my reply carefully saying I wasn't an expert and that these were things that I found helpful. I fully appreciate that we are all different, but this lovely forum is all about sharing what works so that others can get ideas and inspiration.

PMRpro profile image
PMRproAmbassador in reply to Prof99

They don't think that the PMR could be related to the enthesitis? In that both can be found in certain sorts of inflammatory arthritis? It doesn't always occur even to doctors.

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