Adjusting to life with PMR

[JanieBaxter]

Thank you so much to everyone who has replied - i am so glad I found this site and will continue to check in and read comments from others in the same situation as myself it is so helpful to hear other people’s stories and learn more. Until 4 weeks ago I had never even heard of either pmr or gca - it hit me almost overnight - only symptom prior was aching thighs for a few days then one morning could barely get out of bed!!! I have no upper body symptoms it’s all from my hips down. Took two weeks of pure hell and blood tests before doc diagnosed pmr and within less than 24 hours of starting Pred the pain had gone!!! I couldn’t believe it but then started the journey of reading up on Pred and all its bad press - however at the moment I have no choice as I was almost completely immobile and can now walk again so for me that outweighs the bad. I think I also may be fortunate as I started on 15mg and it worked straight away - doc said 6 weeks on that then back to see him so I am back just after new year - once again thank you so much for this wonderful site that has really helped me already 👍

P.S I am 54 which I believe is relatively young for this ?

[SnazzyD]

Greetings. Us 50’s crowd seems to be a growing bunch on here and certainly over 50 is considered in the range for getting this but any age is possible. Trouble is many docs still have it stuck in heir heads that you need to be 70, so you end up feeling that you don’t fit. So we are not rare gems and probably not common as muck, but somewhere in between.

[PMRpro Ambassador]

I was 51 when my PMR first showed up - don't believe the doctors who tell you you are too young really as there are plenty on the forums who were in their early 50s when it started. The guidelines do say over 50 - unfortunately at some point in the distant past a study decided the average age at DIAGNOSIS was just over 70. No mention of how long they'd had it - I wasn't diagnosed until I was nearly 57. That means that since a lot of well over 70s have it - there must be a fair number of younger patients!

And don't believe all the bad press about pred. Here is some good press about it in PMR:

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

They are about the same study - just different press articles.

And a warning well in advance - don't let the GP talk you into reducing too much at a time. Not more than 1mg a month is recommended by some top experts.

[Nannie-C]

Hi Janie, sorry you’ve had to join this merry band of PMR people. Glad you are finding it a help to explain the complexities of this and at least your Gp seems on the ball with a quick diagnosis which is a good start. As others have said most are older when diagnosed but there seems to be an increasing number of younger people here now. Again as said before don’t try and drop pred too fast, lots of good advice available on this. Depending what country you are in there are support groups which some people find good to meet fellow PMR’s face to face. Good luck with your journey

[PMRpro Ambassador in reply to Nannie-C]

I suspect the increasing number of younger people is due to increased awareness - and so fewer are fobbed off with "fibromyalgia", "your age", "somaticism" aka "it's all in your head".... I'm sure there are loads more younger patients - and younger than 50 too. But it is rarely considered in younger patients.

[Nannie-C in reply to PMRpro]

Think you’re right that less are fobbed off now and of course good old google plays its part in that. We just need to keep educating the Drs to think outside their wee box!

[TooSore]

I was 51 when mine showed up as well. One problem the younger crowd may encounter is that some docs aren't as accustomed to patients adding in work to life's balancing act with PMR

[PMRpro Ambassador in reply to TooSore]

Yes, I think that has a lot to do with it. Until relatively recently with a female pension age of 60 most patients were retired - not so any more. This is is going to impact the workplace - and that will soon wake them up!