Do personal PMR symptoms change?

[ImC_]

Is it usual for one’s personal typical PMR symptoms to change? When diagnosed (August 2020) my pain and stiffness was from lower back to knees. Could not crouch, wash feet, etc. 15mg sorted all that out.

I started a slow reduction from 5.5mg. to 5.0mg about 6 weeks ago, and am feeling fine in all those usual places but now ache in what I can only describe as my collar bone and shoulder blades. Pulling off a jumper, for example, is awkward and uncomfortable. It is symmetrical.

Is it likely to be PMR symptoms? I am 63 and starting to get arthritis in big toes and fingers.

I’ll be getting results of my first DEXA scan and latest round of bloods when I have my regular monthly-or-so update with GP tomorrow. At these consultations we normally discuss and agree the next dose reduction.

I feel 5 mg is kind of watershed. If the dexa looks promising I could stop here a while, although I know my GP wants to get me off the Pred and things being equal so do I.

She’s been great, throughout, but I would like the PMR experts’ view on this too.

Many thanks.

[DorsetLady PMRGCAuk volunteer]

Hi

See from previous post you were having issues dropping from 5mg to 4.5mg - as that was 10 months what has happened between then and now?

Not sure about collarbones/shoulder blades - but how are your shoulder joints/upper arms - that’s usually more PMR-ish.

Would say that only 2 years in, a few weeks/months at 5mg would do no harm…

…and as you say your “level” may be 5mg - at least temporarily…

But you do need to discuss increased pain levels with GP - and maybe try an increase in Pred, to ascertain if it is a flare, If that doesn’t help significantly, then perhaps you should looking at something else -.osteoarthritis maybe.

[ImC_ in reply to DorsetLady]

Thank you Dorset Lady. what happened last year is that I went back up to 5mg and then up again to 7.5mg and then crawled my way down again using dead slow phasing 0.5mg at time. Also slowed for the period last autumn when my local services were only doing emergency blood tests and I didn't like to go for tests just for routine PMR management. Been OK except for fatigue and I am able to go easy on myself.

My upper arms - muscles - feel fine, but my arms don't like being raised too much.

thanks.

[DorsetLady PMRGCAuk volunteer in reply to ImC_]

Arms not liking being raised can be a few things..osteoarthritis, rotator cuff issues, PMR….but if both, then I’d plump for PMR being the culprit until/unless proven otherwise.

It’s something you need to discuss with GP, and please let us know what you both decide…

Blood tests..are not the be all and end all, symptoms - or preferably lack of them should decide tapering.

I used to see GP monthly with GCA - long before Covid-and we made decisions on tapering based on my lack of symptoms plus blood test results - both not just one.

[ImC_ in reply to DorsetLady]

Yes, my GP always starts with the bloods but she does listen to the symptoms too. thank you

[DorsetLady PMRGCAuk volunteer in reply to ImC_]

Good- that’s how it should be 😊

[Sharitone]

I have had PMR pain in collar bones and shoulder blades!

[ImC_ in reply to Sharitone]

but was it always there or did it move from somewhere else to there?

[Sharitone in reply to ImC_]

Started in hips, then shoulder blades joined in. Cleared up with large doses of pred. More latterly, has been in front of shoulders, collar bones. However, I'm not sure that is all PMR: it could be at least partly the SCM muscles.

[ImC_ in reply to Sharitone]

thanks for clarifying, this is very useful

[cranberryt]

I get PMR pain in my neck and shoulder blades.

[ImC_ in reply to cranberryt]

aha. and - as I replied to Sharitone - was it always there or did it move from somewhere else to there?

[cranberryt in reply to ImC_]

Started in my hips. Then my neck and shoulders. When I flare it usually starts in my neck and shoulders first. Sometimes my hips and knees.

[Koalajane in reply to cranberryt]

So do I

[GLNP in reply to Koalajane]

Mine started in my shoulders and back, moved to my hips and knees, and now back to my shoulders , neck and collar bone

[GLNP in reply to GLNP]

ps: also down my arms

[PMRpro Ambassador]

To be at 5mg after 18 months is pretty good and your GP wants to get better informed! The fact you are still fatigued after months at that level suggests your adrenal function is a bit slow - and that can also cause muscle aches.

Sternocleidomastiod tightness can cause the symptoms you describe and it can be linked to PMR but it does have other causes too - even a new pillow!

medicalnewstoday.com/articl...

physio-pedia.com/Sternoclei...

[ImC_ in reply to PMRpro]

thanks you.it is all so complicated and interlinked .. . Will read these again properly. and consider the pillow issue. thank you

[winfong]

Sounds similar to what I experienced. Initial symptoms were in hips and knees. Only later did it move to shoulders. And, like you, it seemed to go across the shoulders, not down the arms.

[ImC_ in reply to winfong]

thanks for this, it is very useful to know

[Mimma]

Difficult decision and you can only be guided by your threshold to pain. I had a blip at 5 mg too - have now been off prednisone for over a year and fingers crossed when I say it’s all going well.Have also had a total knee replacement last July.

Your GP sounds very good so between the two of you, you’ll get there. Good luck!

[Selfbuilder]

My symptoms do move around. More stable now but for a period it was my main source of entertainment; which bit will ache this week? I did see this as a positive as it suggested that none of the aches was permanent. 😀

[PMRpro Ambassador in reply to Selfbuilder]

Where? Joints involved too? How long did it last and did it disappear altogether inbetween episodes?

[Selfbuilder in reply to PMRpro]

It's difficult to recall specifics now but for a few days it might be my hip joints then that would recede and a shoulder would play up. Next it might be the muscles(?) in my chest. Timescales were a few days. I am fairly active but could rarely make any correlation to activities. One rare exception was when I was working overhead fitting ceiling tiles and lights and got pains in my shoulders and upper arms.

[PMRpro Ambassador in reply to Selfbuilder]

That really isn't typical of PMR (not saying categorically it isn't) but as Theziggy will tell you, quite typical of palindromic rheumatism

healthunlocked.com/user/The...

[Selfbuilder in reply to PMRpro]

That's interesting. I'll look into it. Thanks!

[Theziggy in reply to PMRpro]

Yip, sounds like Palindromic rheumatism.

I was originally diagnosed with PMR, but with help and advice from the great forum members here I discovered that I had Palindronic Rheumatism, had to convince my Rheumatologist,

Sadly there is less help on the internet for Palindronic Rheumatism!

I haven't had flares for ages until last weekend when I had flares in the soles of my feet!! (tune walking on broken glass - Annie Lennox)

[PMRpro Ambassador in reply to Theziggy]

There are several of us that had that feeling with PMR at the start! But rheumies look at us as if we are crackers ... Oh well, nothing new there I suppose!

[Avadip12]

After having PMR for many years one of my “ flair ups “ a few years ago included terrible finger and toe pains. I could hardly turn back my quilt cover. I had my hands and feet xrayed and it showed nothing. After a month it settle and then went , and has never returned .

[Avadip12]

I would also like to add I developed bilateral frozen shoulders , agony and was sent to the shoulder consultant who offered to manipulate them under anaesthetic. I refused , because at that time I was being investigated for thoracic outlet syndrome . My upper body has had its difficulties .

[ImC_ in reply to Avadip12]

oh goodness, you have been through it! hope that too has passed now.

[Avadip12 in reply to ImC_]

Yes I am doing not to bad, still walking everyday, enjoying life . Just the rotten fatigue. Wishing you improved health

[ImC_ in reply to Avadip12]

similar to me. sometimes I feel normal, then all of a sudden need a little lie down.

[ImC_]

UPDATE - thanks for all your comments, and since DorsetLady asked, here’s the outcome of my GP appointment.

My regular GP is away for a while so spoke to a new lady. She went over the various test results but also - you’ll like this - said the symptoms were more important.

(although, as it happens my ESR is up to 20 which it has not been near since I started Pred.)

I don’t think she knew what to make of the collar bone/back of shoulders discomfort but took it on board somehow.

DEXA bone scan showed “some thinning” (osteopenia, not osteoporosis, she said).

Upshot is, she recommended staying at 5mg for a couple of months then talking again.

Meanwhile I’m going to get a new pillow.

[DorsetLady PMRGCAuk volunteer in reply to ImC_]

Let’s hope the 5mg and the new pillow help- thanks for feedback …

[PMRpro Ambassador in reply to ImC_]

If your ESR is higher than it usually was in the past, that is a sign that the inflammation is creeping up and shouldn't be ignored. It needs checking again in a few weeks to see if the upwards trend is continuing. If it is, the most likely answer is that the current dose is just a bit too low to control the inflammation fully.

ESR can rise for all sorts of reasons - even a cold will send it higher. It may be it is higher today for some other reason and that is why you need to check in a few weeks to see if it has returned to your usual level. If it is still rising - it signals a flare is possible.

[ImC_ in reply to PMRpro]

thank you. will do. She said to do bloods again in 2 months but when I have the form I can go any time I please!😉