New patient.

[Francesbarbara]

Hello everyone. I am Alison and have been waiting to be diagnosed as having Polymyalgia for three months. Today the blood tests were more positive for it than before but my GP wants me to see Rheumatologist before prescribing steroids. My husband had Polymyalgia six years ago and my symptoms are identical. I am finding the pain so very fierce first thing in morning and it takes ages to get myself into an upright position. I'm very glad to have found this site and you all sound so helpful and caring of each other.

[PMRpro Ambassador]

Hi and welcome! It would be very helpful to us if you could add a bit of detail to your profile - if only country!

It doesn't occur to your GP that he could "test" the water in the meantime? Response to pred is taken as one of a set of criteria. I hope there is a chance of a rheumy appointment soon - I'd ask the GP why not at least try 15-20mg pred. And what he will do if you start to show the symptoms of GCA.

rcpe.ac.uk/sites/default/fi...

[Francesbarbara in reply to PMRpro]

Thank you for your welcome. I live in the Highlands of Scotland, near Inverness and am 78 years old. I am a retired physio, so only too aware of conditions like this. I am particularly watching out for symptoms of GCA as my husband had that (happily no problems for four years) I mentioned a 'test' of steroids to GP and he was all set to prescribe 20 mg , but then changed his mind and contacted the consultant, who wants to see me first. I think I just have to accept that but each day seems worse than the one before at the moment!

Good wishes to all.

[Hidden in reply to Francesbarbara]

I would be tempted to ask the Dr again to say that it's not clear when normal service will be resumed. In view of that a trial dose of pred would be further evidence for the rheumy regarding a dx. If you mention untreated PMR is more likely to develop into GCA it might move him. Also, PMR is usually treated by gp unless there are unusual circumstances. Don't let them leave you in pain for months. 🌻

[PMRpro Ambassador in reply to Francesbarbara]

"I am a retired physio, so only too aware of conditions like this." - you are a different generation but believe me there are plenty these days who aren't!

Are you in contact with the Scottish charity?

[Francesbarbara in reply to PMRpro]

Thank you - I have found the information on the Scottish charity which I did not know about. Our 'physio training was very different from the academic degree courses that are done today. We were very much 'hands on' people, with hundreds of clinical hours spent with patients, before qualification.

[PMRpro Ambassador in reply to Francesbarbara]

Even in the moderate past the knowledge and hands-on bit fell away badly! Physios here in northern Italy are much more hands-on than anything I experienced in the UK. But that dates back 26 years - not even rehab after a complex leg break with knee involvement except being told to ride the static bike after 3 months in a full-length cast!!!! I thought I was dying!!!!

[Francesbarbara in reply to PMRpro]

I hate to hear things like this and hope that in spite of lack of rehab you recovered from such a complex fracture.

[PMRpro Ambassador in reply to Francesbarbara]

Didn't stop me skiing the following year, complete with metalwork! Then they took the metal out - and I immediately felt rather better By the following winter season the screw holes had healed - was back to skiing and skied until about 5 or 6 years ago.

[Hidden in reply to Francesbarbara]

In the past 12months I have had 4 physio visits. The only one when I was touched was the neuro assessment. Not one hand laid on me by gp or physios. Weird isn't it. On the other hand the ones that checked the inside of my body practically lived in my orifices!!

[ali5son in reply to PMRpro]

Hi PMR pro do you have Glasgow helpline number? Dog ate my recent magazine

[Hidden in reply to ali5son]

It may be here....

pmrgca.co.uk/groups/

[ali5son in reply to Hidden]

Thank you

[PMRpro Ambassador in reply to ali5son]

Only by looking for it on the website! I'm in Italy ...

[alangg]

My (young, new) GP said try pred for a week. If it works it is PMR and if it doesn't, it isn't, and you can stop with no problems. 15mg worked within 4 hours and I was virtually pain free. Consultant, a few weeks later, replied to the referral saying textbook case and no need to see him. I'm in Exeter, Devon.

[Francesbarbara in reply to alangg]

That was exactly what I was hoping for myself. Think I'll give it a few days in hope that Consultant will contact me by tel first - which is what I understand will happen. Would be happy to explain situation to him.

[Hidden in reply to Francesbarbara]

It took 3 months for an appt with rheumy here and I was on pred for 8mths before it. Others have waited for 6 months, usually on pred. Normally a rheumy only likes "atypical" patients to be referred as if it's straightforward PMR the GP should manage it.

[Daffodilia]

It is a relief to get a diagnosis but pred can act like a miracle in helping - can you get second opinion? Good Luck

[ChinaWuntoo]

alangg and what others say.

It took 6 hours for me on 15mg and I thought that was quick! What a relief it was to be free of pain. Both GP (not my regular) and rheumatologist said this proved it was PMR.

[Charlie1boy]

Just read your post, and wanted to say how sorry I am to hear that you have to wait to get your hands on the pred!

I am 5 years down the line now with pmr, but can remember only too well the debilitating pain of trying to turn over in bed etc etc.

I only had to wait 48 hours after seeing my GP, and that was for the blood results to come through, to get my prescription: I was straight down to Boots, and then to a cafe, where I practically gulped down my first dose!

Do hope you get sorted very soon.

God luck

Paddy

[Francesbarbara in reply to Charlie1boy]

Thank you very much for your post and hopefully they'll let me try Pred sometime in the not too distant future. It worked wonders for my husband too.

[nuigini]

With all due respect, I feel your GP is putting you through unnecessary torture! I do hope you are contacted soon and obtain the medication and relief you need. You're far more patient and brave than I would be in your situation.