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PMRGCAuk
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Tapering to zero update: I was wrong

Sometimes something strikes a weird chord. I have ‘Supremes a Go Go’ on vinyl. Must have bought it over 50 years ago, some classic tracks including one which suddenly stopped me today as I listened to it for the first time in some years. Synchronicity? It made me reflect on the Holland and Dozier gospel lyrics with a chorus which suddenly summed up the whole PMR experience:

Like love, you can’t hurry PMR, you just have to wait, nothing comes easy and it’s sure a game of give and take. On the back of that analogy, I was wrong.

Probably had PMR for > 3 years pre diagnosis. Pain different to OA in various joints. Paracetamol/NSAID don’t help. Rheumy diagnosed ‘treat as Pmr’, June 2018; after 15mg of Pred, symptoms resolved > 90% symptoms better in hours. ESR and CRP normal. Only health issue was B12 deficiency (no apparent cause) treated with daily oral supplement.

From June 2018/September 18, tapered to 10mg. Symptoms worsened. Back to rheumy who advised start again at 15mg, slow taper further and stay at each level for longer. Symptoms didn’t improve ( or get worse) so decided to taper off steroids totally and reached zero in February 2019.

Over next 6 weeks, symptoms worsened significantly. Widespread bilateral pain both hips, both shoulders, both biceps, back of neck and head. 24/7 along with severe stiffness and difficulty with steps, walking, sitting...you know the score. Also developed tennis elbow in right arm and frozen shoulder left arm. Grim.

Back to GP who suggested a week at 20mg. Did that, didn’t work. Left it a couple of weeks and decided to try 25mg for 5 days. Much improved. Not back to that first hit after 1 dose at 15mg, but I can currently stand without hauling myself up, step up without being doubled over and pain is reduced, just about manageable.

So, what have I learned and where to next?

Lesson number one: PMR rules, OK. It’s there, it’s insidious, it lurks and it won’t resolve until it’s ready.

Lesson 2: not thrilled with steroids, but there’s no realistic alternative. I’m not sure if symptom control can be improved, but with steroid now at 20mg (I’ve dropped whilst waiting to agree a plan with gp) there’s nothing else to give my life back.

Lesson 3 : I know I’m impatient. It’s an ongoing daily struggle to accept limitations and the life changing effects of the disease. But acceptance is key to effective management.

Lesson 4: its all relative, it’s slow, slow and slow again. Stop battling the what you had; accept what you have and build on it. I have a friend who slipped on ice and from one second to another, her working life as a senior manager, wife, mother etc changed. She’s now quadriplegic; I know she’d give anything to be able to do what I can, but grumble about.

Lesson 5: listen to advice about pacing. It’s a difficult journey. I’ve gone backwards and wasted valuable possible recovery time. It’s probably going to take longer to recover.

If you’ve got this far, thanks. We’re all sharing this appalling journey. This forum is my main support.

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Acceptance and pacing - the two main things! If you get both of those things sorted, it doesn’t have to be appalling!

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A good warning to others, lessons we have learned on the way, and still learning.....thank you....

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You’re so right DL and I thought I’d achieved both, but on reflection, the words are a world apart from experience.

In those early months of the PMR journey, it’s difficult to comprehend what a long, roller coaster we’ve embarked upon. It’s time and experience that prove the truly key points. That’s what makes this forum and the advice so important.

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Yes it is difficult. We are used in this modern world for things to be sorted quickly, and usually by ourselves. This illness takes that out of our hands - and it’s not always easy to accept.

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We live and learn . To learn is to be alive!

It has taken me a very long time to learn and I do believe that that may be why my PMR has lasted more than 7 years and doesn't look like it's going away any time soon. I do keep trying to listen to my body and take note. Hopefully one day it will be well again.

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It's a long learning curve. I realise, some time into the journey, that acceptance is a difficult concept. I thought I’d accepted limitations, but with good old 20/20 hindsight, have a better understanding of that stupidity.

I thought I was moderating activity to accommodate the disease. Wrong. I was reducing what I did, but it wasn’t enough and it’s been a struggle to cross that even lower boundary. Even low intensity activity is a problem; planted 10 cabbage plugs in a small bit of ground I’d already dug over. Took around 45 mins to do a job I’d have expected to do in about 15 mins ( including the digging). Within hours, biceps were on fire. I’d used both arms to dib the holes. So it was still too much!

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7 years and counting for me too....and still a struggle......physically and mentally at times..but we find the strenght to push on, with hard lessons learned on the way!

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I can relate to all your lessons. Have only been on this forum for a very short time, but have received invaluable info. Deeper understanding of pmr, comfort in knowing I’m not alone, someone in this world knows what I feel, starting to recognize start of a flare ( thought pain had to be at the old 7-8 level) set myself back with that belief , moving toward that difficult, for me, state of acceptance . Gracious what a run- on sentence. Old English teacher would be appalled. 🙂 Anyhow, thanks for spelling out the lessons. Right on.

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Just pretend you are James Joyce embracing that Stream of Consciousness thing that's what I do , boat slide gently through the sea , purple lemonade , a deep breath of smoke , hiccup!!!😋😁😂😂😂😂😘

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Virginia Woolf! She streams happily for ever, 🙂

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A Room of Ones Own , To the Lighthouse and Mrs. Dalloway are probably perfect reads for anyone trying to cope with PMR , especially the ladies.

Couldn't have recommended a better read Oxford!

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🙂🙂🙂🌷🌷

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😀

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Oh, please, no.

Seven years of living with hubby doing his thesis and dissertation on Joyce was harder than anything PMR ever put in my way! Imagine me as hubby's editor trying to turn stream of consciousness into academia speak!

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I totally understand , poor you!

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Acceptance and pacing, and listening to our body works! You are so right, we need to stop trying to get to 0 and go as slow as we need to go to achieve our goal of controlling PMR.

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Love the change to the song lyrics !

Perfectly sums up GCA/ PMR advice 😋😁

Glad you have your new philosophy mapped out , but sad that your still stuck on the PMR trip.

And in the words of another song I'm sure this time " Things can only get better"

Take care xx

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I found your rationale for this whole journey wise and uplifting. I totally agree with you and yet, some days, all logic seems to flee. It is a daily task to hang on and remember to smile. I love the moments when you feel unexpectedly enlightened.

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What a wonderful reflection about your journey thus far. It’s a huge adjustment and learning curve. While I was trying to accept my PMR diagnosis I went back and forth between resenting what I couldn’t do, to comparing how much I could do while on pred compared to pre-diagnosis.

I’ve had a couple flares in the last year, but am thankful the last one was managed without going all the way back up to my original dose (or higher).

I have surrendered to the fact that I cannot control the course of my condition. I do have control over my diet, how I balance rest and activity, who I get support from, and trying to maintain a positive attitude through it all (easier said than done).

Hang in there. We’re right here....and we get it!

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Very wise words phoenix

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Yup - acceptance and pacing. The rest will come if you let it and don't kick it away.

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Elton john comes to mind ‘ to low for zero’

Love the Supremes though.

I hope things go better for you this time.

It’s definitely a learning curve for you but hopefully you will be more experienced to deal with things now.

I think most of us have been there , so you are not alone in this.

Good luck

Carole

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What a wonderfully inspirational post. I a so sorry you have had this set back. I am very new to this disease and unfortunately De Nile ain't just a river in Egypt is it. I hope that your recovery goes well and it will take as long as it takes. I have given up full time work and am now just working 20 hours a week. It is taking some getting used to but at least I am still working. I am able to get myself up in the morning however creaky, get to work, come home, and collapse on the sofa for 2 hours or so, I sleep most of the afternoon away but it does mean I am reasonably with it in the evenings. This PMR is the work of the devil to be sure but at least we are breathing, we are relatively compos mentis and we have the comfort of this community to give us strength and hope when the getting gets tough. Love and light to all my fellow PMR guys and gals.

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My heartfelt thanks for all your kind comments and support. This situation was, doubtless, predictable, but I didn’t fully understand that it was going to get worse again. I thought at the 10mg plateau, I could manage.

This time round, if there’s any slight sign that it’s getting worse, I’m going to up the dose for a few days, rather than put up with it. Advice here gives me better control.

There’s a couple more positives; the frozen shoulder has eased and I can lift left arm laterally to just above shoulder level. Haven’t been able to raise it more than a few inches until recent days. And the tennis elbow is tender but much less painful, so the steroids must be hitting both.

I’m going to sell my mountain bike. That’s a big acceptance step; I haven’t been on it for 3 years and it serves as a daily reminder of what I’ve lost. I’ll use the money to maybe have a few days away and do something different with my OH.

Thanks again everyone.

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What a great idea , turn the negatives into positives and every day will get easier

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My first reaction to selling the mountain bike was NOOO! There will likely be more bike rides in your future.

But then I realized the daily reminder is a downer you don’t need, and they DO sell bikes should you want another in the future. Maybe a recumbent or an electric assisted bike someday.

Meanwhile the money from the unused bike can bring you a different joy, I hope.

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It’s about moving the horizon. I think maybe that’s part of the acceptance path. Not lowering expectations, but refocusing on a different and achievable horizon.

For me, the bike was investment in terms of how I intended to enjoy the freedom of being able to enjoy using it. Retired, rural riding, a delight. It’s the bike I’d always wanted and in 5 years or so, I’ve only done just over 500 miles on it. And that was in the first year or so when I was, with hindsight, showing PMR symptoms, but just thought I was tired. I remember my last ride; even in low gear, I didn’t have the strength to get up a hill I’d have considered difficult, but not impossible. I had to walk!

It’s very hilly here and if I can’t use an MB, I’ll abandon two wheels. If I move or suddenly find future vigour, I can get another bike...

I’ve had a really good day today. I’ve NOT done a load of things including:

Mowing the lawn, clipping the hedge, cooking dinner, planting more veg plugs, lopping a sycamore, vacuuming, painting the property, fixing a fence.

Warm and sunny today so I donned virtual blinkers and shut off, happily, to all the outdoor stuff I thought I should do and lounged in bikini (I’m secluded so can’t frighten the unsuspecting!). I’m pondering the possible joy of an American made Fender Strat as a bike substitute. We only live once.👍

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Get an e-mountain bike! Very popular here in the Dolomites ...

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I’m still giggling...

⛷🚴🏿‍♀️🥂

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Why?

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Because whizzing down the dolomites on a bike, e or otherwise is so off the wall. Ooh, the pointy bits! I’m away to darkened room😜

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I’d be a tourist attraction. Please stop...

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Maybe help the crowdfunding? #Leary old bat on a bike.

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Tourist areas always need more help ...

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You’ll be the first I ask to sign up...

Even I’d pay to see my own spectacle! Thank you for some light relief🚴🏿‍♀️🎸🍷

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Mamil always makes me laugh.... especially when it's Chris Hoy saying it too.

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And in the peak District. If only I had balance I would be on one in a shot.

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e-tricycle ...

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Have you seen the price? I did rent a normal tricycle when I took my neices to Clumber park years ago. It was hilarious discovering it is a different animal to a two wheeled bike. Cornering is very weird! If I get some police pension it's earmarked for about 10 things already!!!

1,500 average for half decent one.

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There’s no such thing as a ‘normal’ tricycle. You need to plan days in advance to negotiate a corner on an adult three wheeler. They’re hilarious.

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And Clumber isn’t noted for challenging terrain😀. So funny, thx!

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That's so true. You don't realise you barely move the handles on a bicycle. Of course my neices shot off on 18speed mountain bikes and I was trying to traverse ploughed fields on a 3 speed, thin wheeled trike.

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Crowdfunding amongst the community????????????????????

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Most people round me have even less money 😂😂😂

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THIS community

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😂😂😂 duh!

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Really, OMG...

I went from here to browse the Sunday papers. Talk about synchronicity (I believe crossed paths have meaning, but no idea what)

From today’s Sunday Times,

‘Commuters are to be offered tax breaks to switch to bicycles with electric motors as the government believes they will cut congestion and pollution.

Ministers hope to persuade older people and those who are less fit to try out e-bikes, which are permitted to reach speeds of 15.5mph and do not require a licence.

Will Butler-Adams, the managing director of Brompton, some of whose folding bikes are now electric, said: “It is so easy and so fun — and it will save you your bus pass, your tube fare and your gym membership.”

He said the tax breaks of up to 42% would be “transformational” in bringing the bikes to a mass market. They typically cost from £850 to £2,500 and 70,000 were sold in the UK last year.’

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Whooooo hooooo

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"It is so easy and so fun"

I toppled off ours - never been on it again since, I blame PMR though. Germany is concerned about the number of pensioners having accidents and head injuries because they underestimate their speed. Especially going downhill.

And as a pensioner - isn't your bus pass free??????????

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Well I was a liability on my bike long before pension and PMR!

Yay...free bus pass. I think. I’ve never applied for one. There are no buses here. Well, there’s a bus once a day at 1400 to a village with no shops and it returns at 1540. But it’s over a mile to that bus stop.

The free bus travel concession works very well in city and suburban areas which, by and large, already have strong travel links. But in rural areas with no rail service, no regular bus service and poor roads, it’s a joke. It’s over 14 miles to my nearest rail link and there’s no public transport to get there, or back, so travel concessions to those in most need are meaningless. I have a car and drive, but frankly, I’m shafted if I lose either of those and need to seriously consider the benefits of rural living.

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Sometimes one has to consider a move to a small town (making sure it has doctors, shops and buses).

How about a mobility scooter? The larger ones can travel at 15km ph (I even think there may be one that manages 20km ph.

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Thanks Constance. I think in the longer term, like the next couple of years, maybe some planning to relocate. Where is the major issue. Health services are pushed everywhere. At least we have an nhs dentist here!

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Is there not a less rural option still close enough to the dentist? It was a wrench leaving my NHS dentist and my hairdresser in the NE and NHS-style dentistry is a dream here (private or nowt, lord knows how the financially challenged manage but that is the system) but there are no real catchment areas for dentistry as far as I know. Not that UK villages seem to have a lot these days - and towns are just strange ...

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Dentist is the only NHS for literally miles. His catchment area across >60 miles west and south. He’s very good, so it would be a loss. Not under huge pressure to move, but it’s certainly something to now reconsider seriously.

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Oh yes - I know that! You don't find much more rural than where I grew up! There was a good article in the Guardian over the weekend about the difference between public transport in London and its cost and everywhere else - Manchester is IRO 3x the cost for the same distance. And in the country, where you need it, it simply isn't. I managed with PMR and no pred for 5 years, because I could drive door to door, If I couldn't, I couldn't go there so stayed at home. Then I was stopped from driving for a few months (totally incorrectly, always ring DVLA if you get a similar pronouncement to be sure that is what you must do) and I was stuck - it was 100 yards to the end of the road, bus stop another 50 yards maybe. And THAT was in a town. I'd have been on my knees by then - and Durham is well known for its hills!

When we bought the flat here we had a list of criteria. I can shop in the village, get into town by bus or train, walk to an affordable restaurant for a meal, doctor, pharmacy, Post and Bank all within reach - in a fairly small village of maybe just under 2000. The weather is usually better too ...

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Yes I think acceptance is the key. Sometimes easier than other times- a constant reassessment.

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Mama told be there'd be days like this

There'd be days like this my mama said...

The Shirells, not the Sumpremes for this one...but makes another great ear worm.

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