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PMRGCAuk
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So many new an interesting words I'm learning

I must say reading some of the members posts are very interesting. As someone who lives in the US, I am being introduced to a whole new vocabulary....i.e. lorries, loo, stone, a&e etc. I must say I get a kick out of all the new jargon.

As I am technically challenged, I have been unable to finish my profile. But would like to say I read each and every post....have read Kate Gilbert's book. The discovery that I had PMR struck me as if I'd been hit over the head. It has now been five months since Prednisone was started and,although, I never reached 100 percent relief I am at about 70 percent. I read each and every post on this site and I am grateful for they give me guidance and hope. I onlywish we had support group meetings like those in GB. It must be nice to speak face to face with others with this same problem

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It is a great site, isn’t it?

I always find the American expressions interesting too. My husband is “in” to language and is always popping up with expressions and spelling that are different in the USA. As I get older my spelling gets worse - if I make a mistake I always say “it’s the American way”.😂😂

I’ve had PMR for 6 years (now down to 3mg pred) and have never been completely free of pain - there has always been something “running along” with the PMR but the doctors have not really found out what it is. As I also have polyarthritis it is difficult to find out which is which. 70% isn’t too bad.

Keep reading and posting, there’s always someone on here with help/advice.

Kindest regards from Constance. 💐💐

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It's fun, isn't it, all the diverse use of language - quite apart from being an amazing source of information and comfort to us.

I like the waves of replies as various bits of the world wake up and begin communicating, I'm sure a lot of us make this our first port of call each morning for our 'fix' of international togetherness!

The American 'gotten' sounds odd to our British ears, but like many of 'your' words it is originally one of 'ours' from around the 1300s; the beauty of ever-evolving language!

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"Two countries separated by the same language" ;-)

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Ernest Hemingway..? :-D

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Disputed - generally ascribed to GBShaw but not to be found in any of his published works. Apparently Churchill made it popular later. I don't know - before my time!!! But very very true!

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Not quite the same phrase though

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No, but the link refers to the other versions, so I thought it interesting. I wonder if they are all variants or misquotations of Wilde's?

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Given it was so much earlier - 1880s rather than 1940s - you'd think it was at least the source of the concept.

I note it says it was included in a Treasury of Humorous Quotations - when really it is a serious point!

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I think it went along the lines of: 'England and America - two countries separated by a common language..'?' :-D

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You’re still with us MB?! Job’s a good’un....!

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Hi Paddy :-).

Yep, still lurking around here but a bit quiet recently due to getting sorted at the new Benjamin Mansions. Still hovering around 2mgpd Pred after all the exertion and a few days of DF. A bit of catch-up I think, but bouncing back fairly well energy-wise. So, onwards and forwards (or is it sideways - as is often the case with PMR and the Preds?!).

How are things with you - making progress I hope?

MB

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Still tapering - see my dialogue with PMRPro on this one! I did see a post recently (not sure who from) hinting that letting go of the last 1mg/day might not be straightforward as it would take a leap of faith(!) - might be in that category too.....!

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Surely less of one if you have prefaced it with a VERY long DSNS period?

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Is 24 months considered a long taper, then?

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It all depends on so many factors doesn't it? How much of the pred do you absorb? How active is the underlying autoimmune disorder? How active do you wish to remain?

It may well be that you absorb 90% of the dose, the underlying disease isn't very active, you have a fairly moderately active lifestyle - and so you find 1mg is nicely dealing with the inflammation. But take it away - and you realise how much it WAS doing. Or you find the autoimmune bit has gone to sleep...

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Well put PMRpro :-)

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Ah ha Paddy! Sorry for this long reply (as usual!)

The general wisdom seems to be just that: reducing / weaning off(?) even from 1 mgpd can still be tricky because the PMR activity might still be lurking and / or the 'system' has become physiologically dependent on it even at very low doses? (maybe one and the same thing?). So, either way, 'slowly does it' makes sense, even at 1 mgpd.

As PMRpro and others always say, Symptoms Rule. That said, and as a few of You Lot know, I recently dropped successfully from 2mgpd to zero effectively 'overnight' after extending the daily intervals for several days consecutively. I felt fine at Zero for several weeks, in fact better than at 2mgpd for some strange reason. Maybe the Aunties can explain this Pred Paradox!

But of course that was before all of the physical exertion of the (un-anticipated) Home Move - hence some returning symptoms and a cautious return to 2mgpd as a holding measure. Now things have settled down activity-wise, I'll probably (again cautiously) nudge down again.

I'm sure that a tolerable (symptoms-wise) speed of Pred reduction depends very much on an individual's circumstances and context, and there are so many variables in the process that can de-rail it. I seem to have got off relatively lightly with my more adventurous (some would say reckless!) taper at times, albeit with a bit of toggling up and down as recently. But that's just me.

I think also (only my theory) that there can be a Psychological element / challenge in the 'letting-go-of-Preds' process - even at 1 mgpd - when, even if the physical symptoms are minimal, the Mind has become conditioned to a dependence on them after 'x' years. When I got to Zero it really felt strange NOT to have to pop the Preds every day like clockwork. Although feeling fine physically I almost felt a sense of insecurity / guilt around suddenly NOT depending on them after 3-ish years.

Weird, or what?! ;-/ Possibly a topic for New Post...?

Answers on a postcard please... :-D

MB :-)

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Well - it’s ‘all in the mind’ bit is what’s concerning me, really - I guess you won’t know until you get there/try it?!

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Paddy, only my amateur thoughts but if at, say, a very low 1mgpd your PMR symptoms are minimal and have been for some time, you might try a more adventurous tapering gradient and see what happens. E.g. 1mgpd every other day / a half mgpd / 5-6 days at 1mgpd then a day or two at Zero etc, or some variation on the theme and see what happens...

Of course, the success or otherwise of speeding-up the Pred taper will depend on symptoms +/- and other factors that might influence the equation - e.g. over-activity / stress / co-morbidities etc. I know DSNS and its equivalents are designed to minimise the risk of flares / withdrawal symptoms, but I agree with you about a Leap of Faith - within reason... ;-)

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Hi,

Probably just as well it’s not audio as well then, you’d be really flummoxed /confused/bewildered by the various regional accents! It’s understandable in a large country like yours that there will be differences in accents, but on a small island(s) like the UK it’s amazing. Even some of us struggle to understand each other sometimes! And we don’t all speak like the Queen.

Toodle pip for now!

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Proper job, 'ansum reply DL :-)

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One should only speak for one's self DL. HRH Queen Elizabeth would NOT be amused (although she might just have a quiet titter...) :-D

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Speaking of the Queen, if anyone wants a lovely, gently amusing book, I recommend The Uncommon Reader by Alan Bennett.

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More for your vocabulary, my OH and I were visiting friends who live about forty miles away when the word byer was mentioned, friend turned to us and said you two don’t know what that is do you, my reply was yes it is a mistal, which identified where I grew up. Item in question is a cowshed. Don’t get me started on the words we use as full stops or commas, like “love, pet, flower, and in Derby, duck” as in “morning (love) ,how are you” All good wishes darlin (Norfolk) 🤨😂

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Ey up mi duck , if yersen is nesh put wood in it . Hello dear, if you are cold shut the door .

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Must be a nithering wind blowing.

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My little meister is badly and is a reet pain in tharse.

My husband is ill and he has been complaining a lot. Overheard in a Sheffield Nail Bar. 😄

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I too would like a support group. Where in US are you? I am in North Carolina, west of Charlotte and this group has taught me so much. I have had PMR since June 2017

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Have you thought about using Skype conference facility? Maybe a way forward for those who live too far apart to meet face to face. Just a thought.

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That would be a wonderful idea if I wasn't so technically challenged. Communicating on this site is about the extent of my abilities.

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I'm in Massachusetts.....actually in the Boston area.....one would think that living in a large medical hub that there would be some kind of support group but so far I have not been able to find one. I'm glad at least that there is this forum. I self diagnosed in Jan 2018 after two months of no doctor being able to figure out what was going on. In fact my GP at the time told me I was "too old" for PMR when I suggested my suspicion of PMR...I am 69. Goes to show you that doctors always dont always know.

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maybe you could chat with your doc, and see if a few others in the area might be interested in connecting. We have a "craigs List" as means of making contact...also facebook ...

i live in Washington State, US

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I think having a local support group would be nice, also.

I live in coastal Georgia, and I don't personally know of anyone in my area with PMR that I could connect with. I'm 54, and still teaching full time. I can't get retirement benefits for 8 more years. The thought of dealing with this until I can retire is very discouraging. Some days are extremely hard. I don't know if this illness would qualify as a disability in order to receive some kind of benefits -even if only temporary. Some days I certainly feel disabled....particularly when I needed to be energetic and focused to deal with elementary kids and all the extra duties and responsibilities piled on every year. Sorry for the whining, but I get so frustrated sometimes.

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The vast majority of patients are able to reduce their pred dose down to a very low level and even get off them altogether in well under 8 years - the median duration is 5.9 years but there are about 5% who have it for life and that does pull the figure up a bit. I know a few who got off pred in 2 to 3 years and several who were off pred in 4 or 5 years.

And honestly - very very few of us knew anyone locally with PMR when we were diagnosed. I met people who lived within 20 miles of me via the internet! I found the patient.info PMRGCA forum and there I heard about the launch of the local support group's DVD. I asked if I could come as I lived nearby. There I met a few people from my own area - but far more from all over the UK. You have to look and act yourself.

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I posted a reply recently pointing out that setting up groups doesn't have to be difficult. If you got to a doctor, especially a rheumatologist, they must have others with PMR/GCA on their books. Ask if you could put up a poster in the office asking if others would be interested in starting an informal coffee group. Approach other offices and clinics with the question. Churches tend to have large numbers of older members - PMR is the most common rheumatic complaint in over 65s, there must be some there. A cheap pay as you go cellphone or specific email means you don't have to share personal info to establish contact. Even if you start with 2 or 3, with a bit of patience it will grow.

That is how this all started - a few women from different parts of the UK who "met" on a forum. No two were close enough to get together as a regular group - but they met in London (I think) and the rest, as they say, is history.

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Thank you PMRpro.....that is an excellent idea and as I have an appointment with my rheumatologist this Thursday I will bring it up at that time

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‘Cellphone’ PMRPro?! You mean a ‘mobile’, surely.........

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Actually I mean a "Handy" ...

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Crikey - where’d that one come from?!

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It is the term used in German-speaking regions! ;-)

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Aha - all is revealed! Why do Italians answer their mobile with the word ‘pronto?

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'Cos they do! "I'm ready [to listen]..." is the usual explanation. One theory is it dates from the early days of telephones when you had to go via a switchboard to be connected - and you said "Ready?" when you got through.

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Well - there you go, then! This is SO much more interesting than 3mg per day......(only joking😀) Actually, now it’s mentioned, I’m continuing with the DSNS taper - looking forward to going to just one shiny, black-coated 2.5mg per day - that’s from 20mg, May 2016.

I did see a post the other day, saying not to mix coated/uncoated- how is that possible?

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BLACK 2.5mg??? That's a new one on me - they used to be brown. And the colouring sounds a bit dodgy!

Depends on the person - mixing coated and uncoated can have advantages.

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Ok - dark brown - depends on the light! Am going for my eye-test tomorrow! Am sliiightly worried about cataract progression - is that speeded-up on Pred?

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It is, yes.

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Which do you use now? Or is there an Italian worf?

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word, word - nor worf.😂😂

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"Phone"!!!! The Italian word is "cellulare" apparently. Not what you'd call catchy is it?

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What do you call your landline then?

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Phone...

It is always obvious which is meant here. This is a household with PAYG mobiles/handies/cellulare that have leftovers out of 5 euros per year!

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Theres a spot where you can find people near me. I know there are others in the Boston area and some near NYC. I'm in CT. I'm sure if you're willing to be the organizer there are folks around. I keep thinking about it, but haven't done anything!

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Greetings Luigisim, from the UK :-)

Thanks for your Post, glad to know that you are learning about the eccentricities of the British-English language at the same time as the (even more?) complicated business of surviving PMR! :-D

Yep, UK 'English' is full of quirks and regional variations in jargon, dialect and pronunciation - but I guess that's the same for any national language? In the UK we have adopted many Trans Atlantic phrases in the last few decades - I'm like 'OMG, what are you like?!' But at least it brings some fun and interest to this community as an antidote to the often serious (but important, for many) stuff of talking about symptoms and treatments.

I agree with you about the learning curve with PMR (and GCA). It does hit you like a brick - physically and emotionally - and the journey to (hopeful) remission is often long and unpredictable. But, as you might have gathered, for many of Us Lot there often IS light at the end of the tunnel.

I guess the main challenge with setting-up support groups in the US is the physical scale and geography in terms of getting together around the table for a chat in-person? But, as someone else here has said, the wonders of technology are there to enjoy (Skype / Facetime etc) - if we can get our heads around them. 'Where there's a will, there's a way..'. As you suggest, Guidance, Hope and a sense of Not being Alone are precious elements in the coping process with any chronic illness or major Life change - however we tap-in to them?

Best wishes and please keep posting here - it's always good to have input from relative 'Newbies' - wherever you are in the world.

'Uncle' MB :-)

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You think the US is geographically challenged? Try Canada! And disappointingly the couple of times I've learned about other PMR patients in my province through this forum they promptly disappeared never to be heard from again. Maybe support groups have an image problem this side of the Pond?

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Good point Heron..

Even in the UK I've found that local / regional Meet-up and Support groups can be poorly attended and / or supported when I've had the privilege to be invited to give my light-hearted talks to them. 5 or 6 attendees often, even in a large catchment area. No criticism of the Local Organisers - they are Volunteers and do their best, as I well-know.

Strangely, even in our relatively small country, some of the bigger Cities seem to have problems getting 'bums on seats' despite the demographics and probable population of PMR / GCA sufferers. I know it's a conundrum for the main Charity in terms of how to raise awareness and membership / financial support - nationally and locally.

You might have a point, on either side of the Pond. It could just be that, due to the 'Cinderella / poor relation' nature of PMR and GCA in the hierarchy of nationally publicised and research-funded illnesses and diseases - and the money that the mainstream ones attract (e.g. Cancer, Heart Disease, Diabetes, Children's Illnesses etc) - there still just isn't enough national / international awareness of PMR and GCA, despite the best efforts of the UK national charity and its regional equivalents: and especially those outside of the UK.

So, it begs the 64-thousand dollar question in any country: how many people with undiagnosed and / or appropriately treated PMR / GCA are walking (or stumbling) around 'out there' and not aware of this illness? And.. how can we gain access to them and get them on board? And, as you say, if PMR and GCA aren't understood or recognised as serious and Life changing illnesses, there is an image / credibility problem from the outside world (including some doctors / specialists). And, of course, how many PMR / GCA patients actually get better and disappear into the sunset never to look back...?

Oh well, 'Research / Marketing / Awareness Raising' Work in Progress I suppose?

MB :-)

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