Toobusyforthis

[Toobusyforthis]

Hi all..I’ve just been told my doctor suspects I have PMR I’ve had a Blood test done last Thursday and are waiting to hear back ..I’ve been reading up on PMR and GcA and quite frankly it has scared the living daylights out of me! 😬. The GCA is particularly worrying as I’ve read 1-10 people go blind! I’m 52 years old very active with my own business, my husband is fed up with me even talking about it! Help!!!! 😀

[Theziggy]

What is PMA?

[DorsetLady PMRGCAuk volunteer in reply to Theziggy]

Think a typo - should be PMR...hope so, cos I’ve answered assuming it’s PMR!

[Toobusyforthis in reply to DorsetLady]

Yes sorry PMR type error

[DorsetLady PMRGCAuk volunteer in reply to Toobusyforthis]

No problem. 😊

[DorsetLady PMRGCAuk volunteer]

Hi,

Firstly stop panicking........that won’t help...but we will.

Yes it all sounds very scary, but given the correct treatment it’s not!

Not sure where you got the figure of 1 in 10 going blind, but it’s rubbish..

...l happen to be the one .....but that’s because my conditions was undiagnosed for 18 months......

and there are a heck of a lot of others on here with GCA whose sight is fine.

Once you get a definitive diagnosis, we will guide you through - not saying life will be as it is now, but you will still function and be able to get on with it....albeit slightly more slowly than now...and hubby needs to be a bit more supportive (which I’m sure he will be!)

You may, or may not like to read this ....or maybe just hang on to it until you know - healthunlocked.com/pmrgcauk...

[jimcarlow75]

Hi, if you do have pmr it will rapidly change your life if you want to be pain free. It,s not a welcome thing to be told, you will get support on here though, it helps immensly .I had it first when I was a little older than you, lasted 8 years or so. I also had a business to run, anyway thats another story. First thing tocdo is get your other half on side..Jim

[SnazzyD]

Hello....aaaand breathe. One step at a time. Firstly, PMR doesn’t necessarily mean GCA as well, plus blindness with GCA happens usually when people are not being treated. It can be dismissed as other conditions, especially in the younger age groups, which increases the risk of blindness hugely because treatment is delayed. If it is decided you have PMR, you should be started on corticosteroids, usually Prednisolone, which takes care of the potentially damaging inflammation that causes all the problems. The dose for PMR is much lower than GCA. For whatever reason with PMR, the body’s immune system has decided to attack certain blood vessels to cause vasculitis. The steroids don’t stop this, they just stop damage while your body sorts itself out.

Regards diagnosis, not everyone has raised inflammatory markers in their blood, so docs are then guided by symptom history, or they should be. Sometimes they do a short trial of Pred and a good response is often used as the basis of diagnosis as there is no definitive blood test for PMR or GCA.

What symptoms do you have?

You can get so much support and guidance here.

[Toobusyforthis in reply to SnazzyD]

Thankyou ... It started in October last year, I couldn’t jump up out of the seat for the phone, then waking up in agony in the middle of the night and taking ages to get up out of bed, my shoulders and hips/muscles ache constantly and my neck , I suddenly feel 90 lol ...I have an under active thyroid and thought it was something to do with that ..Thankyou so much I feel very alone as my husband isn’t interested 🤷‍♀️

[HeronNS in reply to Toobusyforthis]

Sure sounds like PMR.

Husband not interested? Will he be interested when things you have always done don't get done any more because you are a poorly person who needs to do less? Your avatar "Toobusyforthis" tells us an awful lot. He needs to understand that you are as disabled, currently, as someone with a broken limb or maybe the flu. And that your life will not return to what he thinks is normal for a long time.

My husband was never openly dismissive of my abilities or lack of them, or of how extremely disabling untreated PMR was, but he has always been rather oblivious. I'm not sure, even after years (since 2014) of this, that he really gets it. But he's a nice person and uncomplaining. If it doesn't get done, well, it doesn't get done. I used to encourage him to vacuum, which I've always found hard even pre-PMR, but now that his eyesight isn't what it used to be I've started doing little bits at a time, not a full-on cleaning, just to keep up. Seems to help and doable for me. So I've had to modify my behaviour, and hubby kind of, sort of, adapts. What choice does he have?

Google The Spoon Theory for an account of how one person demonstrated to her friend what it was like to live with a chronic disease.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Link in my information post - sent to TBFT

[Charlie1boy]

Hi, I'm an 80 year old man, and have had PMR for six years.

You've had excellent advice from some of our most experienced members, so will now have a better idea of what to expect.

I wouldn't wish PMR on anyone, but maybe your hubby would have a different attitude if he became inflicted by it?! (That comment was a bit tongue in cheek by the way).

Best of luck.

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

Judging by mine - yes! Not interested but when he gets a sore back he's dying and a bit put out when I say "welcome to my world!"

[Charlie1boy in reply to PMRpro]

Touche!

[PMRpro Ambassador in reply to Charlie1boy]

[powerwalk]

Best of luck,, welcome to the club! Let us know how the blood results go. If it is pmr, you will probably find the pred kicks in quick enough, just dont think all is cured, its not. We are all here with you.

[Toobusyforthis]

Thankyou so much ..it is very helpful knowing I am not alone ...kind regards everyone xx

[PMRpro Ambassador in reply to Toobusyforthis]

There are over 2000 active members on the forum - you are certainly not alone ...

[123mossie]

Too busy for this....my very words too when I got my diagnosis 13 months ago. Hope you feel a bit more reassured by other’s replies, it’s so easy to assume the worst when you read up about the possibilities. So slow down, give yourself time, & if you do have to join our pmr club there’s plenty of support, information & comradeship here for you.

[piglette]

PMR is not the worst thing in the world you can be diagnosed with, think what you could have been told you had. Also steroids are a wonder drug, life would be a lot more difficult without them.

[Meggsy]

Just to add to the above, PMR usually goes into remission eventually, unlike most autoimmune conditions. 🌻

[SheffieldJane]

Welcome to the forum and all the lovely people on it. There is always support, information and advice available. It makes everything much more straightforward and less scary. What on Earth have you been reading ( GCA one in ten go blind) simply not true. We tend to have reliable up to date information on here and welcome all your questions.

[PMRpro Ambassador in reply to SheffieldJane]

Not quite 10% but in 2016 7.9% were still losing at least the sight of one eye. The presentation was by Longtimer's new hero rheumy Max Yates.

mdedge.com/rheumatology/art....

Just underlining the importance of GP education in recognising the signs and symptoms.

[SheffieldJane in reply to PMRpro]

Sarah ( my Rheumy) told me that the statistics were skewed because of much older patients and that it was rare in younger people like Toobusy forthis. She was trying to alleviate my own fears. I haven’t seen statistics broken down by age though.

[PMRpro Ambassador in reply to SheffieldJane]

The Keele PMR analysis says the rate of PMR in 70+ year olds is 10 times what it is in 50-59 year olds. But there have to be a lot of 50+s that don't get into the records as having PMR - I had it for 5 years with all sorts of suggestions so if many of us are like that it makes the figures an underestimate. They also say the incidence in the SW is far higher than in the NE but they don't know why - loads of middle-class people retire to the SW and are far more likely than someone from a mining village to go to the doctor with aches and pains. There are all sorts of demographics beyond age and education.

Given how difficult it isvery often for people in their 50s to get a speedy diagnosis of GCA that must be a factor too.

[herdysheep]

Good luck with your diagnosis. I suspect that most, if not all on here with pmr/gca were go getters, driven very active people. That does have to change to manage it successfully. You may think about a new avatar -notasbusy

[DorsetLady PMRGCAuk volunteer in reply to herdysheep]

Nice one!

[Whippetygirl]

Hubby fed up with you talking about it, does he not realise how serious this can get and how life changing this will be . Looks like you will be on this journey by yourself, thank goodness for this wonderful site , you will not be alone here there are a lot of amazing people here who will walk by your side. I left my husband nearly two years ago for the same reason, instead of running around after him I had to learn to look after myself.

[Rugger]

If / when you have a definite diagnosis, get Kate Gilbert's book - Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. It's a fairly slim paperback and useful for you to read. Leave it around and hope that your husband picks it up and reads it too. Otherwise ask him to!

My husband read it, willingly and although he's a man who doesn't say much or make a fuss of me, he doesn't dismiss the fact that I have both PMR & GCA.