Have had PMR since August 2011. Had many flares. I have taken 20 mgs for last 4 days. Minimal relief of Frankenstein legs and shoulder pain.

[Bridge1990]

Where to from here ?

[PMRpro Ambassador]

I know a few LongPMR-ers who have the concrete jeans/Frankenstein legs!

[123-go in reply to PMRpro]

I've never heard that expression which I'm somewhat ashamed to say made me smile. Buffalo hump, Pred belly and steroid brain are my bug-bears: easily spotted in a crowd!

[Lejazzhot in reply to PMRpro]

Question. At the end if there is one is there no pain and stiffness at all?

[PMRpro Ambassador in reply to Lejazzhot]

You mean when PMR goes into remission? Most people I know who have got through to the other side are pretty much back to "normal" - but you have always to remember that you are going to be some years older than you were when it started and may well have lost fitness in that time as well as having aged. And you aren't immediately "well", it takes a year or so after being off pred to say you feel reliably recovered.

[Kendrew]

What a beautiful photo. Love and happiness epitomised. ❤So sorry to hear you're still facing challenges after such a long time. You'll be very knowledgeable and experienced about PMR though now and probably know more than most of us. Wishing you better health, less pain, and plenty more happy times in the future.

[123-go]

I hope you get your happy smiley face back soon. There should be a magic, automatic cut-off time for all the lovely people who have had PMR for so long. I think you've well and truly served your time. 😟💐

[MrsNails]

Ah, Bridge Sorry to hear that! My Sympathies, l’m struggling too at the moment.

Do you have a Consultant Rheumatologist, if not it’s time your GP did a Referral, it may take a few more days to feel the benefits of the increased Pred.

Kind Regards

MrsN

PS I’ve just checked your Profile & assume you’re New to us? So a little more background would be helpful.

[43tripandskip in reply to MrsNails]

I agree with Mrs Nails: it;s time you got yourself referred to a Rheumatologist.

[Prof99 in reply to MrsNails]

Gosh!! Is it possible to get Pred without having been referred to a Rhuemy? I am sure my GPs only prescribe reapeats, I am sure they wouldn't initiate it.

[MrsNails in reply to Prof99]

Hi Prof

Where do you live? Pred is commonly prescribed for other conditions.... eg Asthma, Chest Infections, Allergic Reactions etc

[Prof99 in reply to MrsNails]

Ah, I didn't know that. Thanks. I am in the UK.

[MrsNails in reply to Prof99]

Straightforward PMR is certainly treatable by a GP & many Patients with PMR never get referred only if they run into problems or there is a possibility it isn’t PMR or you do not fit the ‘Classic Symptoms’ eg Too Young

[PMRpro Ambassador in reply to Prof99]

In the UK and much of Europe pred is used for a range of problems and prescribed by the GP. In the UK PMR is often diagnosed and managed by GPs and many patients never see a rheumy.It's a different matter with methotrexate and (I think) leflunomide where they must be initiated by a specialist.

[Bridge1990 in reply to MrsNails]

I am trying to say many thanks to everyone who sent a message. Very consoling and emotional. Will fill profile when I discover how!

[Daffodilia]

I call them Tin Man legs - ok on 6 mg but finding it difficult to reduce

[Hidden in reply to Daffodilia]

I have a similar experience. Currently trying on 4.5mg but muscle pains pretty terrible. 6mg seems to be the 'tipping point' for me.

[CarolF1312]

So sorry to hear you've been struggling with PMR for so long. Sending big hug 🤗 and hoping you'll get some relief from the increased Pred very soon.