Newbie here

[Basil20]

Hi all

I was diagnosed with PMR last month and find this forum extremely helpful and informative, it’s good to share stories and give hope and support to other PMR sufferers.

[Songbird69]

Welcome. This is a great site, with so much good advice and help when you need it. It has been my saviour on more than one occasion. Good luck with your PMR journey. You are in safe hands here.

[Basil20 in reply to Songbird69]

Thank you 🙏

[Hidden]

Bad luck for you Basil20. I consider myself pretty much a newbie too. Dec 2019 I was diagnosed but didn't find this site for a while. Were you started on 15mg of Prednisone ? I think it's the usual starting dose for many, although some doctors like to try and hit PMR on the head with a much higher dose of 60mg, like my brother in-law was. Unfortunately, I ended up with GCA once I'd tapered to 8mg, I was then instructed to take 40mg where I've been tapering ever since.

Good luck with your PMR journey and hope all goes well. If I may give some advice though, don't try and reduce too quickly.

Kind regards

Anne

[Basil20 in reply to Hidden]

Hi AnneI started on 20mg for one week, 15mg next week and am on 2nd day of 10mg. Due to see Rheumy next month for tapering instructions….not looking forward to that part after reading some of the horrors people have endured. So sorry to hear you had GCA, how frightening that must have been. Wishing you well on your road to recovery.

[Hidden in reply to Basil20]

Many thanks

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

If you haven't already, please have a look at the the FAQs - See 2nd post on screen or under Pinned Posts -try this for starters..

healthunlocked.com/pmrgcauk...

PS -bit more info on profile would help please - starting date/dose, issues leading up to diagnosis or any other health issues or anything relevant that helps us answer any questions you may have in future.

[Basil20 in reply to DorsetLady]

Thank you DorsetLady, I’ve seen lots of your posts and they have been comforting and informative.I’m just finishing my profile 😁

[DorsetLady PMRGCAuk volunteer in reply to Basil20]

Good..on both counts 🌸

[PMRpro Ambassador]

That is a precipitate reduction - hope your rheumy is a bit more realistic! I take it you are OK so far?

[Basil20 in reply to PMRpro]

Hi PMR proThe reduction hasn’t been too bad, I can feel the inflammation still but no pain, generally settles after a couple of days, must be “getting used to the reduction” I guess? I’m on 10mg for the next few weeks until I go back to rheumatologist.

[PMRpro Ambassador in reply to Basil20]

You are not taking a dose of pred to "cure" anything and then get off it. PMR is a long term condition and you will need enough pred to manage it for the foreseeable future.

Beware - I was started on a similar dose and 6 week taper (the rheumy wouldn't have it was PMR). Six hours after the first 15mg dose I felt human again. I had 2 weeks each of 15, 10 and 5mg and then stopped. I was great all the way through with a steady improvement in the first week or so - until about 6 hours after missing the first 5mg dose. Then I retreated to bed in tears with the pain and stiffness - it felt worse than I had been pre-pred. The symptoms were back with a vengeance - and I have never got back down to 5mg for long in the 11+ years since. It isn't uncommon to find letting in a flare like that makes later reductions more complicated - and I have had a few flares of disease activity too meaning I needed more pred. Every time it gets harder.

[Basil20 in reply to PMRpro]

My rheumatologist did say on my first visit to him I would be on steroids for up to two years so hopefully he’ll have a steady tapering programme in mind, which I do understand everyone is different so I’ll be mindful of that if any flares appear. I’ve digested an awful lot of information since diagnosis and received Kate Gilbert’s book yesterday which I’ve read 150 pages of 😁Sorry to hear your rheumatologist wasn’t supportive with your condition and hope you are managing it well now.

[PMRpro Ambassador in reply to Basil20]

A different GP was prepared to diagnose PMR and provide the needful. I fled the country soon afterwards and no doctor here has ever questioned it is PMR - albeit my current rheumy who knows and writes a lot about GCA and PMR sayd it isn't a usual format ...

"Up to 2 years" my foot - only 1 in 3 patients is off pred in under 2 years. that leaves a lot of us who aren't ...

[Pondweed]

Good morning Basil20I too was diagnosed with Polymyalgia Rheumatica nearly a month ago.... it was an utter bolt from the blue. A daily dosage of 15mg of Prednisolone has had a remarkable effect. This forum is brilliant at supporting, understanding and navigating this condition.... we are not alone!!! I am embracing the support and what needs to be done in terms of medication to feel back in control, physically, mentally and emotionally.... all good.... This too shall pass 👍👍👍

[Basil20 in reply to Pondweed]

I’m sorry to hear you have also succumbed to this awful condition, and to say it hits you out of the blue is an understatement…..I said to my rheumatologist “I went to bed aged 56 and woke up feeling 96” I’ve incorporated more calcium in my diet to help keep osteoporosis at bay and have started drinking a cup of warm milk with a pinch of cinnamon, cloves, nutmeg (all have anti inflammatory properties) and manuka honey in the evening, it’s delicious. We’re early days into our diagnosis but a strong positive attitude helps I believe. 😁