Hello everyone

I have posted a bit in my profile and in a few posts but this page came up asking me to tell about myself so here goes:I am 67, a wife, mother and grandmother. I was diagnosed with PMR six weeks ago after tests for RA came back clear despite family history. PMR and other auto immune illnesses are in my family, my mother had three 😔

I was started on 15mg Pred, reduced to 12.5 after three weeks, back up to 14.5 quite quickly and now on 13.5 until my review in three weeks time. I am usually sensitive to med doses so think I need to go slowly. I have a good GP that I can contact any time if I need to.

I am learning that this is not something I can control yet, PMR is in the driving seat at the moment. As a reformed control freak and 'Mrs Fix-It' I am not finding it easy 😟

[PMRpro Ambassador]

There are plenty of others like you here!!! If you don't learn anything else - you learn patience with PMR!

[Hidden in reply to PMRpro]

Thanks, I look forward to it. I was diagnosed with anxiety when I was 9 due to my childhood and given a shirt course of benzodiazepines, at 9 years old!!! It was always explained away as impatience, but I was diagnosed with autistic traits in 2022. It explained a lot.

[PMRpro Ambassador in reply to Hidden]

My daughter was diagnosed as having ADD during Covid - that explained a lot for both of us and my husband was almost certainly autistic spectrum. When I understood that, it helped me! Know where you are coming from.

[Hidden]

Thank you, yes, it explains my childhood anxiety, problems with school, social problems. My father was clearly autistic as is our middle son and one of our grandsons. No shame at all in being neuro diverse.

[PMRpro Ambassador in reply to Hidden]

Whole family is!! Me too probably!!! The ADD daughter is now with a lovely guy who is also ADD - how anything gets done I have no idea, they are so easily distracted and you get tea sometime. N was much improved on medication - and is now being denied it as she is moving house and, as a result, medical practice.

[Mfaepink1973 in reply to PMRpro]

My daughter was diagnosed with ADHD aged 41 and prescribed Methylphenidate which was brilliant then it became hard to get due to a national shortage so some months the pharmacy manage to obtain some and other months not. Such a shame as it was really effective for her.

[PMRpro Ambassador in reply to Mfaepink1973]

N was 41 when diagnosed - if only we'd known sooner, would have saved a lot of heartache though how her father would have reacted I'm not sure.

[DorsetLady PMRGCAuk volunteer]

I did respond to your reply in another post, but will replicate in here for completeness -

“Welcome,

Have a look at this -

healthunlocked.com/pmrgcauk... of info in the FAQs as well - when you open a post there is feature banner just under post and above replies

re holiday -

Eveb though you aren’t abroad, you will still be out of your normal routine, and not in your own bed [which sometimes makes a big difference] so don’t forget to add in time for rest… and just watch the tapering, not sure what GP has said about that, but I never attempted that just before holiday or whilst away.

Watching the world go by and savouring a cuppa in a different area can be good!😊

[Hidden]

Hi Little Jane, life has a habit of bringing us up sharply by throwing a spanner in the works, and PMR is one heck of a big spanner. PMR tends to dictate the pace of everything. One piece of advice I would offer you is to take a look at your lifestyle. Listen to your body and take everything very slowly especially when reducing your dose of prednisolone. From one control freak and Mrs fix it to another, I understand your frustration completely. It will get better, you will learn to pace yourself and you will get through this. Love and light ✨️

[Hidden]

PMRprincess thank you for your reply. I have had counselling quite recently and I'm getting better at not needing to be in control quite as much. It is rooted in fear of the unknown and apparently can be typical of some people on the autistic spectrum (I was diagnosed in 2022). I guess this PMR diagnosis is a step into the unknown but so far I have found ths forum friendly, informative and reassuring. I will respect the PMR but it isn't always going to have the last word 😉

[Hidden in reply to Hidden]

You are in a safe place here, we are all in the same boat but we embarked from different ports is all.

[Charlie1boy]

Woops!

Whilst I admire your attitude, I would just counsel that, in my nearly eight years with pmr, it nearly always has the last word. If you don’t respect it, and I know you say you will, it does have a nasty habit of coming back to bite, so beware!

Patience, patience patience is the watchword, and give yourself plenty of tlc.

Good luck.

[Hidden]

Thank you for your wisdom, I will respect your voice of experience. I guess I am rather naive, a newbie to the forum and to PMR.

[PMRpro Ambassador in reply to Hidden]

Charlie1boy is right - PMR has a nasty habit of turning round and biting you on the bum if you try to defy it! Overshooting the dose you need and then trying to bluff it out will almost always end in tears and it isn't worth the attempt because it takes so long to get back to where you were. Don't set your heart on being on a specific dose or even off pred by a particular date - it is PMR that sets the rules and there is nothing you can do, eat or not eat, supplement you can take or anything else to change that. Pred is a management system and used well can do a very good job, allowing an almost normal life. But that is all it is. Unfortunately, a lot of doctors seem unaware of that and will try to force you to too low a dose of pred, insisting the PMR is gone. You only know that when you get to zero pred and off it for several months without symptoms coming back, It will happen for most - but in its own time.

[Hidden]

Thank you for your wisdom. I realise have much to learn. When I was diagnosed I was given a reducing programme straight away which then had to be increased 🙄I am now under a different GP who is offering better advice. I can contact her any time

[Hidden]

I think because my ESR wasn't particularly high the diagnosis came when a trial of Pred worked on the symptoms immediately .

[PMRpro Ambassador in reply to Hidden]

Much the same for me - my ESR was never out of the normal range but it did run at 16-18 when my personal normal is low single figures. My CRP was never raised except one day when I had a bad episode of atrial fibrillation - and back to normal the following week. The pred made about 80% difference in under 6 hours - but one rheumy still wouldn't have it was PMR and wanted it to be inflammatory arthritis, of which there has been no sign 15+ years on.

[sidra1968 in reply to Hidden]

Welcome to the forum! And yes, many of our ESRs aren't "high" enough for the docs..

[Hidden in reply to sidra1968]

Thank you for your welcome 🙂

[Hidden]

All these little snippets are so reassuring for me, than you. My ESR was 28 but my CRP was normal. On the second day of a trial of Pred the dragging, burning pain in my shoulders and upper arms had all but gone, triggering the diagnosis. I am waiting for a call back from GP now for update before we go on holiday. Thanks for all your input 🙂

[PMRpro Ambassador in reply to Hidden]

You will get loads of input like this - just ask if anything bothers you that hasn't been mentioned.

[Hidden in reply to PMRpro]

Thank you

[AtopicGuy]

Thank you for starting your Bio/Profile. The most important things to add (in case you might seek advice later) is how you came to be diagnosed: what symptoms appeared? what was ruled out? did you respond to steroids strongly and rapidly?

[Hidden in reply to AtopicGuy]

Ok, thanks