Hi all. purely out of curiosity , I notice mostly anyone joining the group are fairly young, ( In comparison to me ! 
what would the average age for being diagnosed with PMR Be ? I was diagnosed last August and was 81 years young so coming up to my first PMR birthday on August 10th . so far have dropped my Preds from 15 mg and am now working from 8 to 7.5. mg - Thank you Lady Dorset for your tapering plan, .all very best wishes, and take care of yourselves with all the hot weather we are having at the moment ( I hope this is all right to post, sorry if not .)
Am I one of the grannies here ?: Hi all. purely out... - PMRGCAuk
Am I one of the grannies here ?
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seamaid
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50 onwards and that took a lot of hard workby patients to get it down from 60 onwards. Without the charity we would still be getting a lot of patients not been diagnosed correctly.
I was 52 when I got PMR and still have it 10 years later 😟
PMRproAmbassador
The AVERAGE age at diagnosis is 72 - but that is in the middle and the range is from 50 up. It is said that about half of 80 year olds have had or have PMR. Unfortunately a lot of doctors think you have to be over 70 to have PMR and try to tell young patients they CAN'T have PMR - which of course is rubbish! And many young patient have a long delay before someone accepts they have PMR - and that skews the average figure.
I was still 51 when the symptoms started but I wasn't diagnosed for another 5 years. But I still have it at nearly 70.
That's lousy. I'm an oldie at 73 and hoped my year old journey with PMR was on the way out. Maybe optimistic
Just beginning for more than half of us - sorry. But the aim at present is to get to a low maintenance dose to keep things happy in the meantime. And that is generally not too awful at all. Even at my unusually high doses for PMR I have had a good time for the last 13 years - the more difficult bits would have been there PMR and pred or not. Being on pred helped me cope with them nevertheless.
Yep, she’ll never leave Italy for Downing Strt not even for gold wallpaper. Contessa it is 💃💃
DorsetLadyPMRGCAuk volunteer
Of course it’s alright, it’s about PMR, and a very valid question….but not sure anyone can give you a precise answer.I had GCA, no PMR, aged 63 when symptoms started, 65/when finally diagnosed.
I love that you are now 'Lady Dorset' and think you should change to that permanently!
Oh.. does that mean I’ll have to change the gold embossed headed notepaper! 😇👑
we will allow you to keep the gold embossed headed notepaper , you have earned it 😇
Gee... thanks😊.
Hi.I'm Derek.
New to the forum and primary/only carer for my 93 year old mother (who has neither needed or wished for support in all her life). She has always been an incredibly fit and healthy lady, but was diagnosed wth GCA on April the 6th. To say it has taken over our lives is an understament!
This has been a very steep and disturbing learning curve for me; especially seeing my mother decline so dramatically with the side-effects of the Pred's. Her consultant says she has the heart, lungs, blood-pressure and mental faculties of someone in their 6o's but is now physically extremely impaired.
However she is powerfully determined to see this horrible condition through, and I have the support of a fantastic team of NHS workers who, in no way have indicated that because of her age she is not worthy of treatment and support.
This condition is not about me, but abot the vast numbers of people afflicted by both conditions and I feel ashamed that i wasn't aware of it earlier. However, I feel, everyone supporting, helping, working (in whatever way) to help victims of GCA and/or PMA would be lost and incapisitated without the help of this incredible Forum/Website.
Thank you for being my main prop and support fot the last 3 months, and the main reason my mother has found the strength not to give up
Derek
Hi Derek,
You are very welcome, and sorry to hear about your mother, please pass on all our best wishes to her. It’s good to hear she’s getting the treatment she needs, and well done you, it’s not easy being a carer for someone with GCA -as you say a steep learning curve for all. And don’t be ashamed of not knowing about, I didn’t either until I was diagnosed - and many others in the same situation.
And anytime you need help, or reassurance or just a chat please contact. You’ll always get an answer.
Hi and welcome - just to echo DL's reply. We are here - whenever you need advice or a rant.
I hope your mother soon begins to feel a lot better. Things will improve as she becomes able to taper, albeit cautiously.
I would bet that nearly everyone here who eventually got a GCA or PMR diagnosis was unaware of it until it happened to them, or someone close to them. We seem to be an invisible ailment! It doesn;t come up in conversation much, but when it does I nearly always have to tell whoever I'm talking to that it isn't fibromyalgia - unless they happen to already know someone who has it. Considering how common PMR is, GCA less so, and both of them noticeably debilitating, it's quite astonishing it isn't better known.
Why does it take the doctors so long to diagnose? Though I’ve got to say I have the best Rheumatologist , but it took 3 years to find him!
Probably because there is no one specific test for either, PMR in particular mimics other illnesses which need to be ruled out first. Plus as usually in over 50s, sometimes much older it’s very often considered “just ageing” by my many medics.Even the start of GCA, until the telltale signs of headaches, is similar. Although for that there is the option of a biopsy and ultrasound (if available).
PMRproAmbassador
Forgot to say - I'm a granny, the grandchildren are all 20 or over 
I have 8 grandchildren ranging from 18 down to 2. They are the best medicine as when they are around I forget all about PMR.
Mine too!
I would say it’s more to do with the fact that there are probably less tech savvy people like yourself in the higher age bracket.
I don't know - there are quite a few over 80s on this forum I suspect that there'd be a lot more if anyone told them about us!
I agree there are plenty of lovely over 80’s on here but unfortunately the % of over 80s that are tech savvy is much lower that those in their 50’s. It is such a shame for them that they are missing out on the wealth of information available from yourself and all the other wonderful contributors to this site. I would be lost without it.
How true. I'm coming up 84 but dont post too often as my tech savi is not all that good and i am never sure if I've said the wrong thing but i love to read all the answers and believe me, this forum has got me through the last two years. Cant thank everyone enough. X x
I’m a ‘Nana’ rather than a Grandma - same but different! 😂I’m 66years young now & have had PMR+ for over 10years……
I’ve been up n down - had Breast Cancer in the interim & still standing! Currently back at the dose l started in February 2012 but have been down to 5mg but currently just reducing from 15mg -> 14mg
It’s a long old road & currently l’m finding it tough but it could be worse - much worse! So l carry on regardless!…..
Don’t despair, some people do really well - there’s just a few of us that ‘break the mould’!
Seamaid, you are not alone. I am an 82 year old grandmother of eight - 81 when diagnosed in Jan 2021. My entire diagnosis and treatment has been carried out by phone by my GP. So far so good, but that is a lonely situation, and this group has been a lifesaver. I now regard you all as my friends as well as my advisers and morale boosters!
My Australian family has just left after a 3 week visit of thrills and spills, so I'm recuperating from that excitement. Just tested positive for Covid, but not feeling too awful. Add in the current high temperatures, and there'll be a lot of lolling about on the sofa for the next few days.
I had got down to 6.5mg but comfortably coasting on 7.5 for the time being. It sounds as if we are quite similar, and I wish you lots of luck in the next stage of the PMR journey.
Hi , we do seem to have very similar stories , you are only 7 months ahead of me LOL also 81years young when \we were diagnosed. I have 6 grandchildren all in their 20,s I have seen my Rheumatologist twice since then we had a bit of a " discussion " re tapering the second time and have now been put back to my GP and as we are on the same wave length are getting on well, in fact will be having a phone call consultation on Friday, best wishes from a manic and overcrowded Cornwall ,
Welcome to this forum, seamaid.
I was almost 68 when diagnosed. I’ve had a couple of attempts at tapering down. I’ve been on 5mg Pred for a few months now and am currently tapering down to 4.5.
I'm not a “granny” but am called nanny instead. Happy days.
My oldest grandchild is nearly 13 - lives in Australia. Fortunately we have a little four-year-old near us, who keeps us on our toes!🤣
Manic and overcrowded Cornwall. You hosted 3 of my grandchildren at the weekend all in their 20 who just love Cornwall. Hope they behaved themselves. My diagnosis was a phone call 2 years ago and never saw a Dr in 10 months. No help at all. Changed Dr now and if i need them i get an appt. I dont bother them as the forum were my saviours all the way and still are. All the best.
And Grandpas. Just went past 82, and 6 grandkids take some keeping up with!
I'll be 82 in no time at all.....symptoms started at 78 for GCA, I was diagnosed 18 months later. So count this Granny....and bless this forum💞💞
Can't admit to being a "granny" but can to being a "gramps". Diagnosed at 71 and two and a bit years into my PMR journey. OH and myself have eleven grandchildren and one great GC between us.
Another almost 82, next week in fact! PMR for 4 years. 7 grandkids from age 1 month to identical twins of 13, all living within 1/2 drive of us in Berkeley, California. Keeps me young, I think. Tapering now to 6.5 very slowly and I'd be happy staying here forever but Rheumy wants me down to 5mg forever, if I can. Any stats out there for us staying at 6 or 7mg (instead of 5)? Welcome seamaid⭐️ This forum is a major support to all who visit it.
I´m a granny - 2 boys - but only 54
I was 57yrs and I still have it now 5yrs later. This group has been invaluable and is helping me on my journey x
I have a friend who was diagnosed with PMR at 64.SHE refused to accept the diagnosis because "PMR is for old people, and I'm not old".
I only found out when she admitted taking taking pred, but wouldn't say what for. I guessed.
As if having PMR is something to be ashamed of!
That is such a shame, she is missing out on all the help and friendship to be shared on here. could you perhaps steer her in this area ? there are conditions which , perhaps could shame her but PMR is so NOT one of them
The youngest recorded patient with PMR - they looked for everything else and found nothing - was a 24 year old male athlete. He was in a wheelchair until given pred when he was able to get up and walk ...
That is amazing.I'll tell my friend...
And Prof Mackie in Leeds says she has several patients in their 40s. Only the ignorant medics class it as a disease for the elderly alone.
70 with five grandchildren, the eldest is18 next week! Three years into my journey and I have just been told that at two mg I do not have to carry my steroid emergency card anymore ! Yay so pleased it makes me feel normal again😁
I am 69 - diagnosed about 4 years ago - finding it hard to reduce below 6 mg of pred
84 and a great granny! 4 grandchildren. Reducing from 15 mgs a year ago. To 9 now but struggling with exhaustion.. blearyeyed .. and these hot throbbing knees and and ankles at night. Not a lot of fun!! But lucky I know in so many ways! Inside today as forecast maybe 40 this afternoon. Herts UK
Taken darling Juno.. cocker spaniel.. round the field already. Will be reading and doing crosswords today I think!
I put a wet towel on a pillow for my feet last night. Helped cool me down a lot. I wonder if that would help with your knees and ankles?
I'm a 71 year old granny of 8, aged 3-17. Was diagnosed 6 months ago.
I am 63 now, diagnosed at 57. Slowly reducing from 9mg to 8.5mg after several attempts at faster reductions as per reumy. who I’ve only seen once and don’t intent to see again. Luckily my GP is laid back to the point of being not very informative but at least it means I can get on and do my own thing which I feel confident and well informed enough to do thanks to this site. Very envious of your relatively fast taper.
Not an granny yet!
I was 58. Five years on it seems the PMR and GCA have gone, only to be replaced by difficulties with osteoarthritis, weakened muscles and osteopoenia. I am one of the younger ones...but with 17 grandchildren from 5 married children, I'm definitely a granny!
WOW what a wonderful clutch of grandchildren byes youb are certainly a granny
I was diagnosed at 66 and am closing in on 69. I’m down to 1.5 mg of prednisone and have issues with thighs and muscle weakness there. Is this what you have and are experiencing AliDeJ?
Hello Whitner. Yes, I find I do not have much strength in my arms and legs now. I think I could easily injure myself too, just by over doing it. For example, I think I overstretched my arms in the pool last week and now I can't lift my right arm when laying down in bed or grip to pull the covers up. I've heard prednisolone attacks your tendons. In my case it was masking osteoarthritis in my spine too. I was thinking the back and leg pain was a pmr flare but now I know, since having an MRI ,that my spinal column has narrowed and is impinging on nerves to my legs. It's not just prednisolone muscle wastage: Spondylolisthesis with sponylosis. It makes your legs feel heavy when walking and getting out of a car and climbing steps and persistent back ache.
I’m wondering if the prednisone is masking those symptoms I’d be tempted to stay on the prednisone to continue to mask it. I definitely feel stronger on a higher dose of prednisone.
Indeed. I felt invincible on 13 mg! However, 5 years use has contributed to bone density loss which could make life very difficult in 15 to 20 years time. I have been taking Risendronate, a sister of Alendronic acid, and calcium, but bone density loss has been significant over the last 2 years.
I was 68 when diagnosed. 4.5 years later still have it but I am on a low dose now of 2 - 1.5 alternate days.I am a grandma to gran kids 28/26/22 years and 8/7/6/3.5.
I am 78 with 5 grandchildren. 2 live in USA. I am down to 10mg for 3rd time. Hoping to taper to 9.5 next week.Stay cool.
I'm a granny too, 76 years old, diagnosed last month , just started my first taper of prednisolone. Three grandsons, 11, 10 and 8. The eldest lives 200 miles away so I don't see him as often as the younger ones who live locally.
Hi and all best wishes from one sewing granny to anther, I am an avid Patchworker./ quilter/bag maker , latter for three grand daughters who are always wanting new ones!only grandson not interested
😀
Good to meet a fellow sewist. Sewing is my relaxation. I mostly make clothes for myself, (struggle to find clothes that fit on the High Street} and two daughters. Not ventured into patchwork and quilting yet but I have a couple of projects waiting to start. I've made simple tote bags but not a proper handbag. I've noticed that since the onset of PMR I am much slower, currently making a blouse for my daughter, it's only a simple pattern one I've made before, taken me 10 days so far instead of the usual 3 or 4.
I was diagnosed (finally) at 78 by my niece who is a Dr at a family gathering. My own didn’t have a clue. Got rheumatologist referral who concurred. Now 83 with 14 grandchildren, 4 great grandchildren. On first week of reduction from 5mg to 4.5. My struggle is coping with the aftermath of multiple vertebral fractures, plus osteoarthritis. PMR and I have learned to coexist with a lot of guidance from the forum. My best to you, Ann
I was 55 first round then went into remission and hit me again at 72 and continue to deal with it at 75.
I was diagnosed with PMR at age 79 two years ago and am now 81. I'm sure the journey is difficult at any age and I have certainly found it so. I'm now down to 3.5mg and taking it very slowly, patience being the key I think. Good luck to you, Seamaid.
Love that u call her Lady Dorset. Think it’s entirely fitting! Not sure what title we’d give Pmr Pro - unless it’sPRO 4 PM. Oops this got away from me - was diagnosed with GCA at 77, developed (or already had) pmr. And took full three years to reduce pred. Now off it, tho have cataract, fibrillating heart and weak back to show for it. But all bearable and they'll have to catch me first before I go back to the grind again. 🥳🥳🥳
! Not sure what title we’d give Pmr Pro - unless it’sPRO 4 PM
I'd go with that, only problem she lives in Italy...not sure she'd want to swap for Downing Street...🤣😂
Contessa perhaps.
I am another "average" patient, diagnosed at 71 about 3 years ago. Now off the pred but no chance of ever being a grannie! Both sons 40 plus and determined to remain single.
Hi,I was diagnosed in Nov 2021 at age 81. You are not alone. I just do not post but have found that this forum has helped me through the episodes of pain by others mentioning them so that I know I am not alone. I started Pred at 60mg (GCA) and am now at 8.5. Good luck on your journey.
I was 71 when I got it and turning 76 in September. Hoping 5 years is the end of it.. I have a friend who is now free of PMR and it has been nearly a year. Took her 5 years. But in any case. I am still standing and happy to be here! PMR or not.
Hi there: I am a Grammy and 81. I have been in remission for several years now. I was on Prednisone with PMR for 4.5 years. I still follow this forum. You never know when some info you can use pops up.
Okay, I’m another ‘Ms Average’…..first symptoms at 69, diagnosed with PMR almost a year later at 70. Pred journey: started on 15, got down to 9, developed GCA, went up to 40, now, just over a year after that, I’m 72 and on 11.5mg.
Oh, and I’m a very happy ‘nanny’ to two boys aged 5 and 3, and a little girl of 8 months. As someone said above, they’re a wonderful distraction / therapy😊
And this forum has helped keep me sane. Thank you all 💐xx
Another granny here. I was diagnosed at 79 and am now 85 and am 'resting' at 3 mg Prednisone.
I’m granny b10 and have been on this forum for 6 years,told doctor about it and she said PRO probably knows more about PMR than she does ,I’ve been happy on 1ml.for over a year now but she’s always let me reduce preds at my own rate.you are all great and I read you everyday
I was 68 when diagnosed, now 72.
Always a bit late joining the party. I’m 71 had PMRGCA since 2015. Now slowly, very slowly, reducing from 8.5 to 8.0 mg. I’m a nana - 9 grandchildren, 25, 21, 18,13,8,6,5 and twins of 4. 💐
I was diagnosed at 78. Have 5 grandchildren, one fabulous great grandson, two years old and two more due on the same day in late August. Got off prednisone for a year only to end up with having to go back on last October. I've tapered down to 2 mg. and the soul-crushing exhaustion is awful as I do it. I cannot believe this is so darn miserable to have.
Were you better at 3mg? Or did you need more? If 3mg feels more comofrtable then that is also low enough a dose to encourage adrenal function to return - but you do have to be patient
Thanks for the encouragement. My biggest problem is believing a taper or anything else could cause one to feel so tired. I felt better after resting today but the minute I got a bit of energy, I went upstairs to my laundry room and did a couple of loads. Then, as long as I was up, I vacuumed some of downstairs and cleaned the hardwood floor in the kitchen. I hate to feel I'm being lazy and I've always enjoyed puttering around the house like that.And there it is! I cannot admit I can't do what I always have before PMR.
I shall be 89 on August 19th. I'm a digital artist. I live on my own but keep in touch with the world via my electronic gadgets. This group is a godsend. Thanks so much to everyone for sharing your experiences.
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