Differant diagnosis from PMR

[SRIXON]

Hi. I have been taking pred since 2017 this after being diagnosed with PMR. I was started on 20mg, the result was amazing.

Since then I have been up and down with amount of pred taken.

About 8 months ago I started seeing a new doctor who stated after seeing my blood results that evidance of PMR was not thier.

He set up an appointment to see a specialist rhemy to which I was estatic.

I saw the guy approx 3 weeks ago, he said the same my blood results dont support PMR and after a lengthy chat, examination he said my issues were more likely Osteoarthritis.

Before leaving he sent me for an exray and my bloods retaken.

I have just received an appointment for ultroscope scanning and guided injections on the 13th Oct.

Prior to seeing this person I was down to 4mg pred and considering raising it again as i was not good.

He told me to gradually come of pred, im now on 3mg, feel bloody aweful, ache just about everywhere, even getting dressed is hard work. My shoulders and upper arms are the worst affected followed by my lower back and calf muscles, worst in morning.

I feel really low at the moment.

Carl x

[DorsetLady PMRGCAuk volunteer]

Why do even the so-called experts put so much credence on blood markers? There is so much comment on here about this!

Have to say being an arthritis sufferer, yes the stiffness is worst first thing in morning (after having joints in same position during sleep), but it doesn’t ease off during the day like PMR is apt to.

You could try painkillers or topical gels to see if some of it is OA.....he may right in that you do have OA....as well as PMR not necessarily instead.

As he’s told you to decrease gradually - then do that....as slowly as you think fit.

Please let us know outcome of treatment on 13th.

[SRIXON in reply to DorsetLady]

I recieved a NHS letter today; due to covid my appointment for scan and possible injection on the 13th Oct has been cancelled , I am now to rec a phone consultation on thd 26th Oct.

After consulting my doctors surgery yesterday afternoon I have upped my pred from 3 to 5 mg this morning, I think Im feeling better this afternoon, excuse my caution on that statement.

I Will see how next few days go. Carl x

[DorsetLady PMRGCAuk volunteer in reply to SRIXON]

So no scan, no injection then!

Hope the 5mg keeps working for you.

[SRIXON in reply to DorsetLady]

Not at the moment, according to NHS letter rec today Im to rec a call later tgus month 26th I think without gettjng letter ouf again. I hope it it keeps working to defo seem better this evening. Thanks for your response, take care Carl x

[PMRpro Ambassador]

Obviously NOT experts in the realities of PMR!

OF COURSE your blood markers were low - you were on enough pred to keep the inflammation down (which is the idea of course) and so the liver wasn't triggered to produce the proteins that make the CRP and ESR go up. So looking at blood markers while the patient is on pred only shows that the pred was doing what it should. The markers are valid BEFORE diagnosis, but only for about 80% of patients, some of us never have raised markers. They MAY be valid in a flare for some, but not all, patients.

Personally, at under 5mg I'd prefer that low oral dose if it is enough to give symptom relief than the fun of guided steroid injections into joints which are limited in number allowed. And I'd try Flexiseq - WD40 for human joints. Not cheap but good in OA.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Or this - Flexiseq did nothing for me -

sensiwellness.co.uk/cbd/

Considerably cheaper on Amazon.

[Estellemac]

Must say Carl this is me too. Painkillers do nothing which helps me differentiate between my chronic osteoarthritis and PMR. My Rheumatologist also said my PMR has gone too as my blood are normal and have been since diagnosis and Prednisolone. So I reckon its adrenal insufficiency. I know its not OA its a different localised pain as knew then when I needed a hip replacement. I have another appointment on the 18th November we shall see what happens then.

[SRIXON in reply to Estellemac]

Thanks, ATB Carl

[SnazzyD]

Why do some docs seem to think that muscle pain must be OA if the bloods look normal? With the way some people describe their PMR pain, I can’t fathom it.

[PMRpro Ambassador in reply to SnazzyD]

Me neither and something I have often wondered! I have NEVER had joint pain apart from a sharp pain in my right knee which one rheumy asserted was OA because she could "feel it". It went away eventually and reappeared for the first time since pred last year. Whatever it is, it isn't OA - confirmed by x-ray and then it disappeared a few weeks later.

[SRIXON]

Thankyou all x

[tangocharlie]

Sounds to me like (yet) another case of a doctor thinking PMR must have gone by now as the textbooks say it only lasts 2 years, but ignoring the symptoms to the contrary. I fell for that one. The PMR hadn't gone though so things just got worse. Personally I wish I'd never bothered with a rheumatologist and just stayed on 5 Pred for ever as things were stable. Surely if the Pred is doing you good then it must be PMR rather than osteo as the latter wouldn't respond to steroids? There are other things that respond to steroids other than PMR, but if they were working well for years I'd just carry on a low dose personally.

[PMRpro Ambassador in reply to tangocharlie]

OA can be inflammatory and may be improved by pred. But not as much as some doctors seem to think!

[Purple-Owl in reply to PMRpro]

Initials can be misleading. I have been thinking OA was Old Age. Ah well... Maybe they're the same thing....

[PMRpro Ambassador in reply to Purple-Owl]

Often closely correlated ...

[SRIXON in reply to tangocharlie]

Thanks Charlie, your words make sense. Carl

[Lollybygolly]

I had the same wonderful result from Prednisolone and started well in January. The Covid epidemic has meant no visits but my GP allowed a continuation... thank gd. But I can get no lower than 5mg without a return of debilitating symptoms. Some days I take an extra 1mg if I know it’s going to be busy and tiring. Ask you doc to help you stabilise. A reduction is desirable but not if you return to immobility. If your Doc is stubborn about this, I suggest you change your doctor. Good luck!

[PMRpro Ambassador in reply to Lollybygolly]

Remember you are never reducing relentlessly to zero pred - you are looking for the lowest dose that gives the same symptom relief as the starting dose did. Pred isn't a cure - it is a management strategy to allow a better quality of life in the meantime until the underlying autoimmune disorder that causes the inflammation and so the symptoms has burned out and gone into remission. And that takes years - not months ...

[SRIXON in reply to Lollybygolly]

Thankyou x

[sailboatstewart]

Sailboatstewart

I have been in the same situation having been diagnosed with PMR 3 years ago. Prednisilone solved the problem overnight 15mg . My new doctor referred me to a Rheumy

who did loads of tests and said I don't have PMR I have osteo arthritisis and must come off

Pred due to high blood pressure. In doing so the pains came back .

Thank fully due to lockdown I came across "Health unlocked" as appointments with the GP are for emergencies only. Dorset lady advised me to contact my GP by phone appointment and request 10mg of pred. Thankfully he agreed and Eureka the pains in my shoulder and thighs have gone and I get 6 hours sleep a night and my blood pressure is normal.

When you are 75 quality of life is what matters. I am now tapering the dose to 9mg for a month and will continue to reduce gradually if the pains stay away.

It is obvious due to the comments on this site that many GPs and Rheumys do not understand PMR

Thankfully there is no substitute for experience as shown in this website. Long may it continue

[Joanbill13 in reply to sailboatstewart]

I’m with you. This site has been so helpful. Especially now.

[SRIXON in reply to sailboatstewart]

Thanks SBS.

[borednow]

Well said you - particularly the bit about quality of life at 75. I started on this glorious journey over 3 years ago and am now down to 2mg per day, occasionally dropping to 1.5mg when PMR not looking. However, did this once before and ended up back at 5mg after PMR twigged what I was doing! So going very very slowly now and quite happy to remain on 2mg for ever! So onwards and upwards (or downwards) - I wish you all the best

[sailboatstewart in reply to borednow]

Sailboatstewart

Another satisfied sufferer finding relief, great news .

[Barnaby2]

It sounds rather similar to me! I was given Prednisolone in January and felt so much better for a couple of months until another doctor decided to reduce doseage and all pain came back.. She asked advice from rheumatologist who asked me to come off Pred and take Naproxen instead. I then started getting a lot worse again and I rang and spoke to another doctor who thought he had better examine me. He was not convinced about it being PMR and I was then referred for a guided steroid injection into my hip which had been the worse pain but actually on the day I went my arms and shoulders were more painful. Anyway They had a cancellation so I had it done last week. My pain is so much better even in my arms and shoulders and I feel like I can manage day to day activities again at last!

However when I was already under the x ray machine about to have it done she told me that if it was PMR I might not notice an improvement and to be aware that if I get Covid now I might get it worse!

I was also given a piece of paper that said to keep a record of my symptoms as my GP would ring to see how I was-not happened yet!

So i am waiting to see if tis improvement will last-Good luck with yours!

[PMRpro Ambassador in reply to Barnaby2]

Shows what they know!! It really isn't unusual for a patient to have a joint injection like that and find all the other aches and pains have faded as a result. Later, when the pains return, the doctors realise they were due to PMR and oral pred is needed. So don't forget!