PMRGCAuk
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Taking the plunge

A very good late PMR morning (it was when I started writing this) to anyone picking-up this post. Having followed the forum for a couple of months, written 1 reply and gained an enormous amount of useful information, I am “taking the plunge” and introducing myself. I’m not a great social media user (I have my personal reasons), so this has been a considered step. Why am I posting now? Well, having totally used up all my spoons over the last couple of mad days, I’ve relegated myself to bed for the morning and writing this post is, I think, a positive use of my time.

So, here I am. I’m 60 years young, slightly mad, recently retired nurse & widow. I live in an old falling-down cottage which I love to bits, but which is a complete money bucket, surrounded by my beloved garden, in beautiful countryside with my collie dog, aged cat and new partner. I also have 1 horse, having sadly lost the other one last year. The former lives in more palatial surroundings than I do. He incidentally has Cushings syndrome, diagnosed around the same time as my PMR. unfortunately his tablets are a lot more expensive than mine and no NHS for horses. My nickname for him currently is “Sick-note”! We used to do a lot of competitive dressage, but both our bodies are ruling- out that at the moment.

I’ve always lived life in the fast lane, doing high stress jobs and a little more burning the candle at both ends than was necessarily good for me, but I’ve always eaten good food and despite plenty of things going wrong with my body over the years I have been physically active and been blessed with youthful genes. The last 8 years though, have been really testing having lost my mother and father in quick succession in less than good circumstances and then suddenly lost my husband in truly horrendous circumstances 5 years ago. So lots of trauma there which had to be dealt with and the fallout continues even today. Fortunately, I was lucky enough to meet somebody last year who has brightened my life and helped to lighten my load. Having returned to nursing 15 years ago after the same period out in industry, I finally threw-in the towel in September, having decided that fighting the madness that is frontline NHS at the moment was not in my best interest. I’d rather be broke, healthy and happy, than miserable, sick and only marginally better-off. In the light of my PMR diagnosis, this proved to be a very sensible decision. So, I have been officially a pensioner since January 21st and am adapting to a slower way of life (we’ll slow by my standards anyway). This includes, joining the WI, attending a residential course at Denman College, outings, riding the horse when I’m up to it, walking the dog virtually every day, going on 2 week holiday to Sicily where I managed to slowly walk up a 340metre high almost vertical lump of rock and round 2 craters of Mount Etna. We averaged 5 miles a day walking with lots of sit downs.

I was diagnosed with PMR 23rd November 2017. There were a few warning signs that something wasn’t right in the preceding months. Blocks of a few days feeling very lethargic and dragging myself around to do normal tasks & work, but no pain. Crunch time came 30th October when I woke up feeling rubbish. I was off work for a week with a strange virus like illness (not flu). It came on suddenly and wiped me out for about 5 days. By Nov 5th I was pretty much fine and enjoyed the fireworks and had friends round for dinner. Next day got up at 05:30 to go to work and had real stiffness and pain in the back of both thighs in my hamstrings. I had to sit on the bed to get my socks on. That’s weird I thought, perhaps I overdid things after the virus. Sciatica in both legs? Unlikely. Virus got into my muscles? Humm.. Oh well, kick-on and perhaps it will go. Well, long and the short of it, it didn’t, although it was a bit better in the evenings. Colleagues at work thought it weird (bear in mind, these are doctors, nurses and therapists working with predominantly older patients!) Post-viral syndrome thought most likely. After a week and it getting no better I hobbled into A & E to see a patient and ended up being one myself! Seen by an Emergency Nurse Practioner who thought it most likely to be sciatica (i’ve got a typical nurses back!) and gave me strong anti-inflammatory tablets & Co-codamol and a week off work. I wasn’t convinced with the sciatica diagnosis - both legs? It didn’t feel like nerve pain either. Aha!! Come the next Monday, the light bulb 💡 goes on and starts flashing. Pain has now gone to my shoulders & back of my neck. S***!!! I know what this is. Why oh why do I have to take after my mother so much??? I rang my GP practice, no appointments left, of course. I did manage to persuade them to get the on-call to ring me. Bless her cotton socks. I described my symptoms. She said I needed urgent blood tests that day and booked me in for an appointment with one of the other GP’s later in the day. I managed to drive myself down to the surgery, picked-up the blood form, drove to the local hospital for my blood tests and duly turned-up for my appointment in the afternoon. Dr’s first words? “Well, I wasn’t expecting these results”. Raised CRP & ESR, white cells normal, everything else normal. “You’ve got Polymyalgia”. “Yes” I said “ I’d kind of worked that one out”. So, started on 15mgs Pred & 20mgs Omeprazole and given form for blood tests in 3 weeks. “Do you need to know more about your condition now, or will you look it up on Google?” She asked. “I’m fine” I said, knowing full well she didn’t have the time and I could find all I needed to know out there somewhere. So I left with a prescription, a promise of a DEXA scan in 3 months (which has happened, and the results were not as good as I’d expected), repeat blood form, a tapering regime and a request to let her know how I was getting on in a few days. If it was PMR the steroids should make me quickly feel a lot better, which they duly did and I was bouncing off the ceiling and like a Duracell Bunny after 3 days. So symptoms to diagnosis in 3 weeks. Pretty good judging by many of forum users stories. Could it have been quicker? Yes. Partly my fault for soldiering on and partly A & E’s for not taking a full history, cursory examination and making assumptions. But we are where we are and things could be a lot worse.

I got myself down to 8mgs of Pr3d by end of April, but 9 was a bit of a struggle and on 8 I was feeling worse even though I went in 0.5 increments. So as I had a holiday coming up I went back up to 10mgs and felt better after a couple of days. I got back last Friday and am going to try the dead slow programme of reduction from now on. I’ll let my GP know what I’m doing when I talk to her this week about my DEXA scan result. I already know that my left hip is osteopaenic and right hip is border line osteoporotic from when I had the scan done, but I really don’t want to take alendronic or any other of the nasty drugs if I can avoid them. So I’ve upped my Vit D & calcium, just had 2 weeks in the sun, so that should have helped and going to try to get in 10,000 steps a day which the dog will appreciate. I’ve read that Vit K1 & 2 good too, so will ensure I get enough of them. If the GP has got any better suggestions happy to listen.

By the way, my mad couple of days were 3 hours spent on Monday grooming and washing my horse who I hadn’t seen for 2 weeks, walking the dog twice, acupuncture and 3 hours in the kitchen trying out new recipes for Sicilian food. Tuesday was 2 hours at the stables, walking the dog and a trip down to London to go to see The Rolling Stones at The London Arena (not spent sitting down!) which resulted in me getting to bed at 1:30 this morning. There are some things in life you just have to do, even if there’s pay-back time.

So, that’s me. Life’s not a bed of roses, but it’s what you make it. Hope I haven’t bored the pants off anyone whose had the strength and tenacity to keep reading. Looking forward to getting to know you. Think I’d better get up now and see if I’ve regained any spoons, although the cat and dog haven’t moved off the bed in the last 4 hours so nobody is chasing me. Seems a shame to miss the sun though, so may have to move into the garden if I can resist pulling up those weeds which keep waving at me!

Bye for now.

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Hi Nerak12,

And officially welcome as this is your first post!

Yes, you’ve been a bit reckless with your spoons recently, but hopefully you can manage them a little better from now on!

You don’t say, but are you still at 10mg? If so, it won’t do you any harm to stay there fore a little while before you embark on your reducing plan.

A slow taper and 0.5mg sounds good, but you mustn’t forget that the underlying PMR is still very much alive and kicking - after all you’re only 6 months in! There is no rush, 2 years minimum probably longer.

Well done your GP, wish everyone was diagnosed as quickly! And well done you for biting the bullet and retiring - as you say maybe less money, but certainly less stress!

Just keep on eye on those spoons! 🥄🥄🥄🥄🥄🥄 They do have a habit of slipping through your fingers!

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Hi Dorset Lady.

Thanks for your reply and welcome. I’ve been following your wise words for a couple of month, so a late thank you for helping me on my journey of discovery. I’m still on 10 this week - ahem, just as well after yesterday!! I’m going to be a good girl this week and just do 9.5 1 day next week then slow taper to 9 and see how I do. I get it, it’s a marathon, not a sprint. I’ll try to keep the spoons in the drawer.

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Good girl!

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Hi

Welcome. I know that feeling of using up the spoons so glad you have a rest from what seem a lovely but busy life.

If 10mg suits at the moment I would stay there for a few weeks then start tapering again. Sad to say it's early days for you and you don't need to rush it just yet.

Have a lovely rest day!🌻

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Hi Poopadoop. Thanks for the welcome. Morning in bed has paid off and no horsing around today for me! 10mgs it is for now. See how I am after weekend then if ok, v.slow taper. Taking every day as it comes, just like life in general.

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Welcome and well done, you beat me. I "lurked" for two years because I have concerns about social media.

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Hi Scats. Thank you. Recent scandals have proved our scepticism is valid and I find people’s need to share every minute of their life with the world rather curious. But then, I could just be a grumpy old woman 😜

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No you’re not! I’m flabbergasted at what people post on Facebook - are they really as stupid or naive as they appear! Unfortunately it’s the “celebrity” culture which seems to abound at the moment.

When I go to the hairdressers they always give me a rubbish weekly as well as a decent monthly magazine to read.... and I’m pleased to say 99%of the people paraded in OK I’ve never heard of, nor want to! Bonkers!

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They say that a Facebook is the policeman’s database!

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My main concern is what people write about their children. I have a friend, a former work colleague,with two little boys and I'm sure they're going to be angry and resentful towards her when they're older as she posts the most detailed and potentially embarrassing stuff about their day to day lives.

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I joined facebook two years ago as I was told it kept you in touch with family and long lost friends. It did, and I was delighted to hear from them (at first)😏😏. However, the rubbish they put on there astounded me. I left after a few months. Unfortunately Facebook keeps your details and every now and again they inform me I should open up again as I have messages. I didn’t and won’t!

Have a great weekend. 💐🍸🍾

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I obviously have very sensible friends... A lot of them work in the NHS or are teachers - and I suspect that does make them more aware.

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They just don’t “think”! They put photos of their children/grandchildren on there and I’m old fashioned - I think children should be protected from, perhaps, beady eyes!

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Hello and welcome Nerak12 . I found your story very interesting reading and found myself nodding in recognition at certain points. In a way yours is quite a text book journey. The exceptional stress in the run up to your diagnosis chimes with me also. I am so glad you have joined us in spite of your ( shared ) reservations about social media. At least we have a supportive purpose on this forum. Your lifestyle sounds lovely, well done for making it so. I look forward to hearing more from you.

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Hi Sheffieldjane. Thank you. I’ve been following your words of wisdom closely and like Dorset Lady & PMRPro’s words found them all reassuring, informative and sensible. You are all a much needed resource in negotiating the maze of PMRGCA .

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Welcome to the club, no I didn’t want to join either. You will find a lot of support and information here and also a lot of humour at times. Rest always helps so sit in your garden and just watch it grow. All good wishes.

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Hi & thank you. I will try, but Little Weed keeps thumbing her nose at me. I threaten her with all sorts of fates, but she just keeps growing. Why can’t slugs and snails eat ground elder and bindweed instead of my vegetables???

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Why indeed!

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Haha. Little weed indeed. We have quite a nice property, especially considering it's in the middle of a small city, which includes a lightly wooded steep bank at the back of the property which unfortunately has the ubiquitous ground elder, here called goutweed, marching slowly but inexorably down towards our garden. At the front of the house is another evil plant which appears to spread via rhizomes. I think this plague originated with a pretty wildflower which, in all innocence, I left unmolested for the summer some years ago. Big mistake!

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Oh no! Not creeping buttercup or celandine by any chance? I battle with those too 😱. I also have a little plant called Oxyalis, which I foolishly planted about 15 years ago because I thought it was pretty???? My mother raised her eyebrows when I told her. Now I know why! Everywhere!!! Aquilegia which sows itself at every opportunity and why on earth anyone would pay good money over for Lady’s Mantle is well beyond me. I can’t give it away. Yet, despite all these plants I call weeds because they happen to be in the wrong place, my garden fills me with joy every time I look at it.

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I thought it was something called creeping bellflower (campanula rapunculoides) but looking in the wildflower book the leaves are different and it spreads by runners, not rhizomes. So now I don't know and I think it may be unwise to allow it to flower in order to find out! We've marked the colours of our tulips so when they have finished we are going to dig up the entire bed, lift what we can, hopefully dig out anything snuggled up close to the shrubs, and put in new soil. Big job. I think it got this bad because of the couple of years I was too unwell to really keep up with it and it got completely out of hand. Now when I try to weed I find I'm also pulling up handfuls of autumn crocus and other small bulbs and corms....

Gardening should only be undertaken by an optimist.

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Mmmm. Could it be convolvulus/bindweed? I have a guy who comes in for a couple of hours most weeks (weather depending), who keeps on top of the heavy jobs like lawn & hedge and some weeding - time allowing, but nothing beats doing it yourself, so I share your frustration. New soil sounds good, but it might be worth covering the old with black plastic sheeting for a couple of weeks prior to putting the new stuff down to kill off anything that remains after Armageddon.

Optimists & aspirational pragmatists I think 😀. Good luck!

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Nope, not a vining plant at all. Deeply rooted, which is the problem. I just spent a few minutes in another part of the garden pulling up some mint which had got away on us, and it was really easy to pull up because it spreads by shallow runners. Now it's just a question of keeping an eye on the area and pulling up any shoots that appear. The evil unnamed plant is a completely different animal. 😒

We've got a huge roll of heavy duty landscape cloth to smother goutweed survivors so maybe it would be a good idea to do what we can in this other area as well. I'll suggest it to the menfolk.

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Goutweed/whatever I think can grow again from even a tiny piece broken off. So when you pull it out and a bit breaks - you've had it!

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The new technique we are going to try is to decapitate it, removing all the leaves, then covering it with landscape cloth. We also need to plant something around the perimeter which can give it a run for its money. Apparently Japanese spurge (pachysandra) is a good bet. Trouble is I need my menfolk to actually DO all this!

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I was told the only way is to use a weedkiller that kills right down to the roots - and paint it onto the leaves first. I sat on the lawn to do it - and it worked!!

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No weedkillers for us. 😱

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Glyphosate will do it with no problem, but no weed killers for me either. I garden organic. I think it’s the blanket & constant maintenance unfortunately are the key. However, burning off & boiling water work on small areas.

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No, I didn't use chemicals either. But I made an exception for ground elder. It only was used for that - hence the sitting on the lawn to paint individual leaves...

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That conjures up a very funny vision of a lady in a straw hat and floaty dress & paintbrush. Sorry 😜

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Alice in Wonderland, the gardeners painting the roses.

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Spot on! By the way, I love the picture that appears by your name. Are you a quilter or patchworker by any chance?

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Thank you. I took a night course in stained glass a few years ago. This was my project. You have a good eye. It was suggested we look at quilt patterns for ideas. I chose as simple a pattern as I could, but did specifically look for an eight-pointed star. The yellow glass has a sort of smoky swirl through it, and when held up to the light it is actually quite astonishing! But I have never been able to figure out how to safely hang it in a sunny window, It's a bit heavy.

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Could you have it put into a metal frame with legs so it would also rest on the windowsill?

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Perhaps, if we didn't have cats, and if I wasn't likely to knock it down and break it even without the help of cats. 🙀🙀 And angling it (on a too narrow sill) would mean the sun couldn't shine through and the effect would be lost. Someday we'll solve the problem. we'll move and the new place will have a suitable window. It really is heavy, about fourteen inches square, glass and lead.

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Nah - jeans and t-shirt is more my style... ;-)

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We have a little wooded area at the back of our property, which is actually a fairly steep bank going up. Goutweed marches in continuously from neighbours. And even if open burning were permitted in city limits, which it isn't, we'd have quite a conflagration on our hands if we tried it. Would get rid of goutweed, no question, but probably the neighbourhood too! 🤣😆😂

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I am not naturally of a sunny disposition although I like to hope for the best. Does that make me an aspirational pragmatist?

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It might well do 👍🏻

Bindweed is deep rooted. The older it gets, the deeper the roots and it can then send off runners when it gets established. It’s a b****r to pull up when it’s got the roots really down. Are the flowers white, quite large and bell shaped? But then you say it’s not a vining plant, so it doesn’t climb if left to grow?

Glad to hear you’ve got some “muscles” around to help you.

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Welcome - you know, getting to 10mg since November is not bad. Especially if you want to use spoons at that rate! Prof Kirwan and his group would keep you at 10mg for a year - it reduces the flare rate from 3 in 5 to 1 in 5 patients.

Weeds are just flowers but not where you want them to be - changing your mindset is much easier than fighting them...

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Hi. Thank you for that bit of advice re: 10mgs - very interesting. Has he written a paper on those results which I can quote when I speak to my GP? Having been a medical nurse for so long I’m very aware of the side effects of pred and so I’m really trying to get to the optimum risk:benefit dose. I’m in the high risk category for osteoporosis as I had an early menopause, very short HRT & both my parents had fractured NOF’s before they died. My maternal uncle had Late on onset insulin dependent diabetes. The only good thing going for me is my BMI - well within the green area and my good diet and general level of fitness. I’m sure you understand my concerns. It’s a seesaw!

As for those weeds.......

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rcpe.ac.uk/sites/default/fi...

Most of the side effects of pred CAN be managed when you know how. Ask - someone will have been there!

I guess I'm fairly lucky as mine really are minimal even after 9 years! I did have an awful 8 months or so when I was on methylprednisolone - that was plain evil! Beard, weight gain, textbook Cushingoid... But it all went away when I was switched to prednisone in the form of Lodotra/Rayos.

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Thank you PMR Pro for your rapid response and the link. A useful paper. Great to see primary care & specialists working together.

I’m not saying I need one now, but getting referred to a rheumatologist in my area requires initial referral by GP through what I can only describe as a filtering and stalling service. - the community rheumatology, orthopaedic and physiotherapy service. Getting an appointment with them takes forever - I mean months even when your GP marks the referral urgent and even after you’ve been assessed by them if they deem it appropriate, you wait another age to be seen by a specialist, otherwise you get put on a waiting list to see a Physio and go on another waiting list. It’s basically a money saving & waiting list management & stats fiddling service - keeps waiting list numbers, hospital referrals and length of time to treatment down so they can achieve government targets. When you try and ring them you are put on hold for ever - I’ve given-up several times (it’s not a freephone number) and if you don’t contact them they write to your GP and say they are throwing you off the waiting list because you haven’t been in touch, but you can self-refer if you still need to be seen. Then you’re back with the whole telephone problem again. I’ve been on to my GP surgery today about it today. It’s the second time in 3 years I’ve had the same problem. The 1st time I gave up and went to a chiropractor privately as I was in so much pain who thankfully, but at no small expense eventually sorted the problem. When I did finally get an appointment with the Physio, she hadn’t got a clue and actually said so! I had to have 6 months off work with it and at one point the pain was so bad on top of everything that had gone before that I got to a point I began to think I couldn’t go on. So unlike me, as I’m a real fighter, but everyone has their limit. The 2nd time with a work related knee injury nearly a year ago & even occupational health couldn’t get me seen. I’ve now retired and am still waiting. I know it’s a cartilage problem, occ health know it’s a cartilage problem, my knee is still clunking and now I’m on Pred, whooppy doo!! Now the service has been outsourced in the last 6 months allegedly to improve performance and I’ve been thrown off the waiting list because I didn’t answer their text and letter that I never got. Give me strength!!

Oh dear! That was one hell of a rant. Sorry 😐

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No need to tell me about it! Mercifully I now live elsewhere so don't have the fight. Yes - I think your assessment of the referral nonsense is quite correct - and one is left to wonder how many GCA patients will get snarled up in it in areas where the GPs haven't a clue about it and there isn't a fast-track line.

At least now it does appear that the mess that is the NHS has been noticed - but now the fight will start about where the money comes from. Of course they'd need rather less if they had been putting it in all along as they were told was needed instead of wasting so much on "reorganisation" and cutting down on frontline staff. My daughter went for surgery the other day - at least she got to theatre as she was first on the list. But some 6 hours late because there wasn't a bed - so what were the theatre team doing in that time? And having got there the blockage wasn't where the surgeon had assumed so he couldn't do the big stuff he'd planned so the full time wasn't used. Could I assume that the imaging hadn't been done first to save money?

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Dear PMRPro, there are none so deaf as those who do not want to hear. The costs of repair are always higher than regular maintenance and faults left too long can sometimes never be fixed or become unaffordable. Which begs the question, is that the plan?

Very stressful experience for your poor daughter. Does that mean that she’s going to need further surgery? Poor thing. I hope things are resolved quickly for her.

The imaging issue is a tricky one. Appropriate imaging is rarely a waste of time and money, but the emphasis is on appropriate. That said, the criteria are pretty robust. The surgeon must have been pretty confident they knew what they were going to find if no pre-op imaging was done. That said, even when it is performed, surprises do still happen once the patient is opened-up. Either way, not nice for your daughter. I hope she gets better soon.

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They inserted a stent which will be removed in 4-6 weeks. Then they will do further investigations to find out what it really is. So she's off for a week now, will be off for the removal no doubt and then, if they DO find out what's really up and can do the reconstruction they think is needed it'll be another period off sick. As long as the dear old NHS doesn't decide these are all separate incidents and put her on referral for poor sickness history (she's a paramedic). All because this is a long standing story - the first signs were nearly a year ago. Treatment within a maximum of 4-6 weeks should guarantee a full recovery - that's possibly already out of the window and long term renal problems loom...

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Oh the joys of the NHS sickness & absence policy! Thank goodness I don’t have to deal with that anymore. If it’s any consolation, in the 4.5 years after my husband’s death I managed to clock up 2 episodes of 6 months off, 2 episodes of 3 months, 1 of 6 weeks and 2 of 1 week. I went through the policy process every time and because it was all totally legit and some of them were due to NHS inefficiencies they couldn’t do a thing about it. In fact in one case it actually bought me more time off. Hopefully, as it sounds like your daughter could be a victim of same inefficiency, she should be alright. Has she been in touch with Occupational Health? I found them really helpful if you get them on-side. I sincerely hope she’s alright. It must be very hard for you too. Such a worry. X

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Yes Occy Health was consulted - and said nothing they could do! Hmmm - better tell her about that, it may be useful info. I get the impression they don't treat any asthma related time properly either - so it looks worse than it is.

OH had been in the NHS long enough to accrue 5 months off on full pay when he had his first cancer episode. His boss allowed him to work from home between the weeks of chemo and he had a queue of people coming to his room to ask questions while hung up on the drips! By the time he'd got to the radiotherapy stage he'd run out of paid time so took all that unused holiday for that month. By which time he accrued another month sick leave - so we went on recuperative holiday using that with the boss's blessing. Probably couldn't do that now...

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Just saw this post. So sorry to hear about your daughter's travails. I hope things get sorted out quickly and efficiently here on out.

I also hope it's not just dreaming to hope that.

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“Weeds are flowers too, once you get to know them”. ( A A Milne)

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Welcome. We could be twins! My story mirrors yours in so many ways it's spooky, even down to the horses. I was a show jumper. My girl hated dressage but could perform a wonderful passage and half pass on a hack!!

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Hi PMRNewbie2017. Ah, that’s horses for you. Sicknote performed some amazing airs above the ground on Monday on the lunge - not asked for! Amazing what they can do when they want to! He was still on all 4 legs yesterday, so If my thighs are up for it and weather permitting, I’m going to take him out for a plod round the lanes tomorrow. Better than watching him get fat in the field. Do you still ride?

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Sadly no. A friend asked me to ride her new horse 18 mths ago and he dumped me. Ex eventer with lovely paces. Turns out he had a back problem. My injuries from the fall took ages to repair and at 60 I don't bounce well! Just dogs, gardening, golf and tennis now. Gently as pmr/gca permit.

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Ouch!! My self-preservation instinct is also much stronger now I’ve hit the same magic number as you and I’ve stuck to the flat for the last few years. However, as we both know horses can be unpredictable and back problems seem to be a major cause of unseating behaviour from the rear and front ends. Interesting you are managing to play tennis. We have a nice little club in the village and I keep being encouraged to play, but I can’t even bend enough for bowls at the moment, so have just agreed to give croquet a go. Going to try it this weekend. Where have you got to on your PMR journey? Still taking the tablets?.

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Almost mirror you. Fluey symptoms Oct 2017, headaches, spine tender, then shoulders and hips joined the party. Just knew it was pmr. My dad had it and I was a pharmacist for 35 years. Retired at 58 because of NHS, you'll understand! GP started me on 30mg pred on 23rd Nov (think she was worried about headaches being gca related). Saw consultant on 4th Jan and he said I have gca too. No temporal artery inflammation visible. I chose not to have a biopsy. Now down to 10mg and I'm one of the lucky ones. Very few problems from the illness. More issues from the drugs. Refused AA and continue to have battles with Rheumy over it. I paid for a private dexa scan which showed I have excellent bones. I also stopped Omeprazole because of side effects and the fact it contributes towards osteoporosis. Pred gave me raised IOP so been seeing ophthalmologist to monitor for glaucoma. Just had pressures checked again and they're down to 16! I have hamster cheeks, teeth very sensitive to cold though that's improving as the dose has reduced and my bladder control has become dreadful!! I take the regulation Adcal twice daily plus a load of supplements and oily fish. I take high EPA/DHA omega 3 twice daily, vit k2, a multivitamin, magnesium and Co Q 10 100mg. I've ditched carbs except for very occasional rice or slice of homemade wholemeal soda bread. Having learned loads from the aunties here and researched pmr and interleukin 6 extensively I decided from day 1 to do whatever it took to calm my immune system and help myself heal. My gp thinks I'm crazy but my feeling is my lifestyle created the conditions which caused my body to overproduce IL6. Over a sustained period of time (much of my life) my body couldn't cope with all the stress I gave it any more, and I know what event triggered the response which started the illness. So, for me, understanding the role of IL6 in health and autoimmune illness has enabled me to effect the many changes in my diet, lifestyle, mental attitude which I believe have combined with the pred to result in my journey being not too bad. In fact I've learned so much and changed so much it's almost been a valuable life lesson. Let's face it, you don't die from pmr. It could have been a lot worse.

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Good to know a pharmacist believes in taking supplements! How’s your bank balance? They’re not cheap!

Totally agree about the life lesson, and what a lesson! Should have listened to all the wise words about work v life balance and prioritising and making time for yourself, don’t sweat the small stuff etc,etc... Having just exploded at the radio this morning following a crass remark by someone, I clearly have a way to go....

You don’t die from PMR is absolutely true, but having specialised in acute medicine & elderly care I’m far too well aware of the consequences of inactivity, diabetes, glaucoma, osteoporosis & polypharmacy etc,etc. Need I go on? Even with all that, I am still learning soooo much.

The sun has just come out, so going to attempt a slow potter round the lanes on the horse. Hope I can get off at the end.

Good to hear your story. Thanks.

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Bored? It was like reading the intro to a good book!

WELCOME! You are in the right place!

You and I were diagnosed at the same time... I was hit with the "headache from hell" on 13/11 but waited to go to the GP; and I think it was 23/11 when I saw her and she sent me to A&E. I have PMR & GCA... and I am now down to 40mg.

I wish you the very best and hope your time on this journey is short!

Melissa

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Poor you mamici1, a double whammy! Ouch!! I hope you continue to improve at a steady rate. It’s a tough journey, but at least we’re not alone. Thanks for your kind words.

Funnily enough, I’ve thought about writing a book about my experiences over the last 5 years in particular, but probably including a bit about the previous 3, which would be titled “You Couldn’t Make It Up!” Don’t want to go into details at the moment, but you really couldn’t. It might ensure I put my feet up for a couple of hours every day!

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Fabulous!!!!

I have sent you a private Message!

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PMR is not “life threatening” , but it is definitely “ life altering” ( one of the aunties told me this when I was first diagnosed, and so naive about this disease). I found it such a calming statement 👍. Can’t say enough about the help , encouragement , and knowledge I have gained here. Thank you again and again ✔️

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Wellcome Nerak12. I admire you for just getting on with your life. If you can do that to some degree then everything is so much easier to cope with. At least you recognise when you have overdone things and know when to take the well deserved rest.

Good luck on your pmr journey and sure that we will hear from you again now that you have taken the plunge to post.

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Welcome. I've never had the energy you have but also live in an old cottage surrounded by beautiful countryside. I'm finding it's a longer journey that I thought and I need to pace myself much more than I do. I'm glad you plucked up courage to post. This forum is absolutely brilliant.

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Welcome! So enjoyed reading your introduction to this forum. You seem to have made such good progress so far - hope it continues well. Yes the spoons are a pain but you obviously had a great time last couple of days which I'm sure were worth it. Just need to get back on track now I presume.

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What an amazing thread. You told your story in such an interesting way. I have just a couple of comments, which I hope will be helpful. You say your DXA scan was not as good as you'd expected. You probably already know that Omeprazole can cause bone thinning? Most of us can manage without it, just making sure to eat when we have pred, often people have some yoghurt only, but I have to say I like my big breakfast! And I seem by default to have become one of the go-to people when it comes to bone care, so here's a link:

healthunlocked.com/pmrgcauk...

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Hi and thanks for the link HeronNS. Yes, I do know about the downside of Omeprazole now, and I wish I could do without it. However, I have previously had an ulcer albeit many years ago and have a tendency to get acid pains after many years of living on ibuprofen & other NSAIDS for severe period pains - thankfully a thing of the past and disc injuries and other musculoskeletal injuries. Caught between the devil & the deep blue sea. I’ve now supplemented my diet with all the other recommended vit’s and minerals and PMR allowing am trying to get my weight bearing exercise consistently up to 10K steps. Not doing too badly now on that one. Arms get plenty of work with the horse! I take my Pred with yoghurt, but I have other food too at the same time. I might try switching to Ranitidine from Omeprazole, because it has a shorter duration and you take multiple doses during the days. My acid problems are greater in the evening/night when the stomach gets empty, so I could try taking my calcium with my evening meal so it might get absorbed better. Just a thought.

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I take calcium in two doses, one with lunch (when I don't forget and then I take it with supper) and one near bedtime with a bit of yoghurt and sometimes a small snack. I find the bedtime dose has helped me get over lifelong intermittent insomnia! I had been taking calcium with breakfast but of course, as I later found out, we aren't supposed to take it with pred. I wish I'd been told that at the beginning!

I've heard that ranitidine is at least as effective as the PPIs and has fewer potential side effects.

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Good morning HeronNS. Interesting comment about the effect of your calcium supplement. Does it contain magnesium, as this can have some calming properties? Interestingly, a lot of owners of excitable and nervous horses give them a magnesium paste supplement if they need them on their best behaviour. As I’m sure you are aware, It is also a constituent in some over the counter bone health supplements. Obviously, it’s not a good idea to take too much, as it can cause heart irregularities in excess.

Ranitidine is often prescribed in preference to Omeprazole for more senior patients and those requiring antibiotics, as it is thought to be less disruptive to the guts normal flora.

It would be so nice if we had been told lots of things at the beginning of our journey, but that just goes to prove the enormous value of patient support groups such as this one. Very grateful I found it. Just feel sorry for people who don’t have internet access or who are not able to have access to a computer.

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Thanks for your comments, Nerak. Over the past couple of years I've taken two kinds. Usually it's been calcium hydroxyapatite in a formula designed to provide a lot of the bone health micronutrients. The other is more standard: calcium citrate which includes D3 and magnesium. Both seem to have had the same effect when it came to my sleep. I do not need any stomach protection from pred. :) I am well aware of the issues with too much supplementary calcium, especially in the absence of other nutrients needed for its proper absorption.

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Enteric coated/gastroresistant pred does help a lot with the gastric problems. They are available in 5, 2 and 1mg pills and they are NOT significantly more expensive than plain pred (long story, will tell you if interested).

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Hi Nerak12

Welcome to our Group 💐 l’m sorry to reward you have PMR but pleased ito hear your diagnosis was so quick & that you’re being sensible by taking a rest morning, it is very much a balancing act to still be able to achieve or ‘do’ normal(ish) things.

I try to plan one main activity per day & diary it in, l then decide what else l want to do on the day.

For me, rushing is my main enemy so l always try to factor in that extra half hour ie saying l need to be ready for 10am when it’s actually 10.30am sounds odd but it works for me.

I’ve had a very stressful week & two busy days so l had yesterday off, late lie in, up for lunch & back to bed for a nap then did lots of planning & online booking until l got up for my main meal, so hopefully today l’ll feel well enough to tackle the days ahead.

We are moving House after 34 years in our family home & the exchange of Contracts couldn’t go through as top of the chain wouldn’t exchange, anyway we’re still moving on 8th June as planned into a rented Town House with No Garage! But we’ll manage & things sometimes work out for a reason.

I’m sure we’ll ‘speak’ & get to know you more in due course.

Meanwhile, Welcome 💐

Best Wishes

Mrs N 💅🏼

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Hi MrsNails

Thank you for your words and sharing your wisdom.

It wasn’t the way I planned to start my retirement, but nothing about the last 5 years in particular has been planned, or expected. I’ve certainly learnt about pacing and making time for me, but sometimes my zest for life wins and I pay the price. Especially when the sun comes out, so not today then! I’ve just done the Frankenstein walk with the dog with a winter jacket and boots on after being in shorts and T-shirt yesterday. So, quiet day catching-up with paperwork in the study now. If I achieve 1 or 2 objectives a day I’m happy. Vacuuming & washing-up can wait.

Moving house sounds like quite a challenge for you, but as you said, sometimes these things happen for a reason.

I’m sure we’ll chat again. X

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Yes we will speak again soon, there’s lots of help on here & sometimes we just simply chat!

We have a hot day here today but as you say it changed from one day to the next.

Mrs N x

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