possible PMR?

[Hephzi]

Hi there. I developed bilateral frozen shoulder, upper back pain, hip/sacroillic pain and thigh muscle soreness in the space of 6 months. Struggle to walk, get out of bed, rise from a chair, climb stairs, get dressed etc. life is hard to manage physio doesn’t really help

I have shoulder capsule release but it stuck again quickly. Physio suspects PMR and tells me to tell GP to run blood tests.

Do you think this is possibly PMR? I have another autoimmune disease (microscopic colitis) which developed 2 years ago but I have been symptom free from that for a year.

Thank you for any advice. I’m 51.

[PMRpro Ambassador]

By halfway through the first line of your post I was thinking "That sounds very PMR-ish to me". And I was 51 when mine started so don't let a doctor claim you are too young - international guidelines say over 50 for the age range but you can get it even younger.

[Hephzi in reply to PMRpro]

Thank you. I will progress this as I need some answers.

[SnazzyD]

Some very familiar words there and it’s bilateral. A GP visit sounds like a good idea. There is no actual test solely for PMR but a rise in inflammatory markers is usual, though not exclusively. Diagnosis is often made by the symptom picture, a rise in markers (if you get them). You have already avoided the suggestion that you pop to a physio. I don’t think asking for a trial of steroids is unreasonable and for some a good response to them seals the deal. As PMRPro says, some doctors still think you need to be nearer 70 (the average age for PMR) in spite of the up to date guidelines say 50+. It is also worth asking for a check of your vitamin D. If you are going on steroids you need to protect your bones and low vitamin D has adverse affects even on a good day. It has been suggested that low vitD predisposes you to autoimmune conditions too. If you are low, you need a loading dose course.

[Hephzi in reply to SnazzyD]

Thank you. I will speak to a GP and request the tests. I need some respite from this hell!!!

[PMRpro Ambassador in reply to Hephzi]

Tell us about it!!!!

[Hephzi in reply to PMRpro]

I know. Such disruption to everyday life with something that most people have even heard of. I know I hadn’t. Can a GP normally make a diagnosis or is it usually a referral to a rheumatologist?

[SnazzyD in reply to Hephzi]

Yes GP’s can and do, usually referring in complicated cases. If they sit on the fence and refer you to a rheumatologist, ask for a very good reason why you are being left in this state when it can take months to see one. Even before Covid rheumatology appointments weren’t the most plentiful and it was worse in some parts of the UK. The GP needs to rule other things out anyway.

Also bear in mind, not everybody has raised inflammatory markers in PMR and GCA so they shouldn’t go on numbers alone but look at the whole picture. I find it is handy to ask what their rationale is whenever they make a judgment too.

[123-go in reply to Hephzi]

Whether or not a GP can make a diagnosis depends on their awareness of PMR. It took nearly five months and many blood tests from onset of symptoms to diagnose my PMR. What clinched it was CRP blood tests steadily increasing to 115 and being unable to raise my arms to my head. At this stage my GP said she thought I had PMR and referred me to a rheumatologist with an appointment for four months ahead. I was dismayed at the wait because at this time I could barely shuffle or stand unaided or lift a spoon to my mouth and had lost a lot of weight. After telling the GP, “I can’t go on like this!” and meaning it, she managed to expedite my appointment.

If, as SnazzyD says, your GP would give you a harmless but revealing daily dose of 15mg Prednisolone for one week a diagnosis of PMR could be conclusive. How are your powers of persuasion? You will lose nothing by asking.🤞

[PMRpro Ambassador in reply to Hephzi]

piglette quotes a figure of 75% of PMR patients being cared for in primary care, i.e. the GP. Since PMR is one of the most common causes of inflammatory rheumatological disorders in the over 50s, you would think a GP should be able to recognise it. In the past it seemed to cause far fewer problems with diagnosis - but rheumies seem to have got a bit precious about not seeing patients although since it seems next to impossible to get an appointment even for suspected GCA, why we should be expected to wait months, if not years, for diagnosis beats me, Maybe the hope is it will have burnt out and you don't come to the appointment!

A study come to the conclusion that a high proportion of diagnoses made by GPs were incorrect - and not just saying it was PMR when it wasn't but also not recognising PMR when it appeared.

If nothing else, the GP should be doing a differential diagnosis to rule out the potential nasties that can also cause PMR symptoms which include cancers. It is easy enough to google "differential diagnosis of PMR" after all!

[Broseley]

Your GP should be quite capable of diagnosing PMR. Mine did loads of tests, at my suggestion, following my research. It was during covid so it was over the phone (not the tests, obviously!). My ESR and CRP were sky high by the time I got diagnosed. Prior to that, I had been fobbed off with physio, told to get a massage by one locum, even though they had sent me for XRays and MRI. These latter showed "just inflammation" and the orthopod wasn't interested. But I pushed for a diagnosis of PMR with a different GP who agreed to put me on 15mg pred but by this time, 6 months later, I had developed GCA too. So don't delay!

By the way, I expect your microscopic colitis causes raised inflammatory markers too. Don't let this be an excuse for your GP not to prescribe pred! I have a friend with MC who has to take a short term high dose of pred when he has a flare. I suspect I might have it, or something similar too. I'm waiting for a referral. Good luck and let us know how you get on.

[tangocharlie]

My story is very similar - frozen shuolders morphed into PMR, and I was 50-51 too. Yes it possibly is PMR by the sounds of it. There is no definitive blood test for PMR, just tests that show inflammation somewhere. Your GP might try you on a short course of steroids, say a week or two (Prednisolone) because if they work it is another strong indication of the possibility of PMR. Do not let them fob you off because of your age.

[Hephzi in reply to tangocharlie]

Thank you. I am concerned about the side effects of prednisone but I can’t live like this

[DorsetLady PMRGCAuk volunteer in reply to Hephzi]

what in particular-most can be controlled -and although there’s a long list you’re highly unlikely to get many of them…

[Hephzi in reply to DorsetLady]

I guess osteoporosis is main concern. I don’t have any other health issues other than MC in remission.

[DorsetLady PMRGCAuk volunteer in reply to Hephzi]

Not a given -even on much higher doses for GCA . Do you know whether you have osteoporosis already or are osteopenic (although that doesn’t necessarily progress)… family history?

Have you had a DEXA scan?

No point in worry about something “just in case”…but if you do have an issue there are remedies.

[Hephzi in reply to DorsetLady]

Not that I know of no, either myself or family. Maybe I am just worrying unnecessarily. If/when I get diagnosed I will ask questions about relevant tests. Thank you. This does help

[PMRpro Ambassador in reply to Hephzi]

As DL says - which? Most can be managed or avoid when you know how. I've been on pred for over 14 years after 5 years of untreated PMR. I can't identify anything bad about the pred and never feel anything is worse than PMR without it!

[Hephzi in reply to PMRpro]

Osteoporosis I guess. Just concerned I’ll be storing up more problems but as you say, things are already bad. I need my pain free life back.

[PMRpro Ambassador in reply to Hephzi]

Inactivity is also a risk factor for osteoporosis, After I had been on pred for 11 or 12 years my bone density was still in the mid range of osteopenia, very little changed from at the start, it was measured about 2 months into pred. I have not used alendronic acid - just vit D (4000 IU per day) and at first calcium supplements but latterly good dietary calcium as the supplements caused bladder problems.

None of the adverse effects are inevitable, no-one gets them all and many get very few.

[Hephzi in reply to PMRpro]

Thank you. This is good to know. I will ask for checks to be done if possible as a marker. I don’t have dairy because of MC which is a concern although I have lactose free cheese/milk

[PMRpro Ambassador in reply to Hephzi]

There is a link between MC and rheumatological condtions - so an expert assessment is probably a good idea. PMR isn't the disease, it is the name given to a set of symptoms that can have varying underlying causes. So it is possible that your symptoms have a slightly different cause and there is another option besides pred.

[tangocharlie in reply to PMRpro]

11 years of steroids for me and no great long-term side effects. Short term yes, putting on weight, raised blood sugars etc but they can all be mitigated and probably woudn'thave happened if I'd known in the early days what I know now thanks to this forum. When I wasn't on steroids I was practically bed-ridden or in great pain doing anything like walking so I'd choose steroids over that anyday.

[Hephzi in reply to tangocharlie]

Thank you. That gives me hope. I saw the rheumatologist this week and had many vials of blood taken and be contacted when results back. I so want an answer or something to try. I’m in so much pain. He did say I am young for PMR 🙄

[PMRpro Ambassador in reply to Hephzi]

Not THAT young - all the guidelines say over 50 and last time I looked 51 is over 50!!!!!

[Hephzi in reply to PMRpro]

I know. I said exactly the same. I was also young to have MC but definitely still had it. I need to wait for the bloods. What would I be expecting to see in the results to push for PMR pred?

[PMRpro Ambassador in reply to Hephzi]

If you are lucky the ESR and CRP will be raised - but you can have PMR without raised markers. Sceptical rheumies "don't believe you can" ...

[Hephzi in reply to PMRpro]

So hope they are raised to avoid having to apply pressure 😂

[PMRpro Ambassador in reply to Hephzi]

Quite ...

[tangocharlie in reply to Hephzi]

I'd ask your GP for a short trial of steroids, at least 15mg. If it works miraculously that's something to support a diagnosis of PMR, though steroids do work on other things so it's not conclusive. A rapid response to steroids is something of a tickmark to suspect PMR. If it does nothing it helps rule it out. and after only a week or two you can safely just stop taking them, no harm done at all.

[Hephzi in reply to tangocharlie]

Thanks.

[Hephzi in reply to PMRpro]

I have been sent a copy of a letter to GP told my ESR is 57 and CRP 54. Everything else normal. So I have a couple of weeks until my appointment so hopefully he will let me try pred.

[PMRpro Ambassador in reply to Hephzi]

It would be justified! Let us know ...

[nuigini]

Absolutely!! Describes me to a 'T' prior to PMR diagnosis!! Interestingly, I was diagnosed with celiac disease 4 years after PMR and microscopic colitis a year after that. I could have had the latter two for decades based on symptoms, just never tested for either.

[Hephzi]

wow that’s interesting. Have you been able to get those conditions under control?