PMRGCAuk
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Am I just being a wuss?

Glorious Bank Holiday weekend greetings to one and all. Boy doesn't some sunshine make you feel better even if you've no energy to do anything in it! :-)

I'm 53 and/was fit'ish, always did lots of walking, some swimming/cycling etc. I seemed to have joined the exclusive but rather unwelcome PMR club 2 months ago.

I was on 15mg of Pred for about 6 weeks, almost instant relief and apart from a few days where my energy levels rather surprisingly were gone all was pretty good.

I'm now into my 3rd week of 12.5 and it'd hellish. I must confess I rather overdid things on holiday, far too much walking (And beer!) I started the 12.5 as soon as I came home.

I assumed the first week of feeling so rough was a combination of pushing myself too hard on holiday and the reduction. The main symptoms I have are; pain in thighs, shoulders/neck and top of arms. This isn't a bad unbearable pain it's just constant and you feel like your legs and arms aren't really going to work. By far the biggest issue is exhaustion. I am completely knackered all the time, I have no energy whatsoever.

Does all this sound normal? is there a normal for PMR? is this just how life is and I need to shut up, adjust and get on with it? I'm really despairing at the moment, I'm using up all my holiday from work as I just don't have the energy to carry on as normal but what do I do when thats gone?

Any advice on how others have coped gratefully received.

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Withdrawal symptoms are usually over within a week. And these can be very similar to PMR symptoms. So I wonder if you have gone below the dose you need.

The perceived wisdom is to taper maximum 10% of your previous dose which would be 1.5 mg drop. Ie 15mg to 13.5mg.

My symptoms came back when I dropped like you from 15 to 12.5. What I did was to go back to 15 for a few days. You might want to do the same which should get you back to how you were feeling before and then do DEad Slow Nearly Stop method of tapering. This means you avoid getting withdrawals. Someone else will be along soon with a link to some taper schedules What I do is one day new dose, six days old dose, one day new dose five days old, one day new, four days old, one day new, etc until I am on new dose all the time . Stay there for a few days, and then go down to new dose....never more than 10% of old dose.

Did your doctor suggest the 2.5mg drop ? If so you may want to clear it with him/her and explain why you wish to do a slower taper.

I do hope you feel better soon.

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Thank you Mary, I guess trying 15 mg again for a few weeks isn't the end of the day.

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Hi Mike,

No you’re not being a wuss! But you have probably answered your own question - you have overdone things on holiday - quite understandable, many of us have been there!

Although 15mg to 12.5mg is a “recognised” reduction, sometimes it’s too much - for a variety of reasons.

The initial dose of Pred given is larger than you would need on a daily basis, but it’s to get the accumulated inflammation under control, sometimes that takes longer for some than others, although good you stayed on it for 6 weeks, so you’re should have been cleared. But what the doctors don’t tell you is that -

a. The Pred does nothing for the underlying PMR, nothing does, so you have to remember how ever long you have it - and that varies - you have a systemic illness that needs “managing”! That means adjusting your lifestyle a bit - you are not “back to normal”, so you will get bouts of fatigue etc.

b. The substances that cause your inflammation are produced every morning, always have been, always will be, but with PMR the internal ‘machine” (for want of a better word) is not dealing with them as it does in someone who does not have an auto immune malfunction.

c. You need to reduce slowly to find the level YOUR body needs, not what mine needs, nor the doctor thinks you need! But what Mike needs!

As you’re three weeks into 12.5mg and no better, that suggests your body actually need more, OR you aren’t giving it a chance. I suspect a bit of both! So suggest, run it past doc, you go back up to 15mg get stable again, and then try again - you may be perfectly fine next time around - you never know! But you do have the option of reducing by 1mg (get tabs from GP) or using a slow taper as below

healthunlocked.com/pmrgcauk...’s-simple-taper

Also have a read if this if I haven’t already advised

healthunlocked.com/pmrgcauk...

Can’t remember whether you’re self employed, guess not as you mention holiday leave, but your employers need to be aware of your PMR and they should be trying to make it easier for you to continue work - speak to your HR people and Union Rep, if you are a member.

Good luck.

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Hi Dorset, I trust I am talking to the original? :-)

The problem I have with work is, I can go off sick for a week and self certificate, after that it's notes from my GP. She although not entirely unsympathetic seems to have washed her hands of me. A referral has been made to a Rheumy, the expectation being they will manage my PMR (She certainly isn't convinced that is what I have, I'm kind of avoiding her as she is at least signing my repeat meds, something the less than charming Dr I saw at my local hospital asked her not to do. I am planning on trying to make a private appointment at Chertsey hospital to get a diagnosis (Or not)

My biggest query is the fatigue, should a higher dose of pred help manage that?

Kind regards, Mike

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Aye, ‘tis me!

Yes, a private appointment might be a good idea. Whatever the diagnosis is, then usually Rheumy is happy to see you via NHS for treatment.

A slightly higher dose may improve the fatigue, the problem is, sometimes the Pred causes it as well as the PMR itself - so a double whammy unfortunately.

I appreciate it’s very difficult if you are still working, but the pacing is extremely important, which is why I said talk to your HR people. Of course it’s not helped by a less than helpful GP who’s not sure whether you actually have PMR. So a definitive diagnosis is really imperative.

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Hi

Its not easy working with PMR

I had 3 months off sick at the beginning I could not have worked as DorsetLady suggest speak to you HR department .

You will not be thought anymore off if you return to work too quickly

Put yourself first

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Thank you Rose. Timing is as they say everything! We are just looking at major funding/contract cuts at work, survival of the fittest and all that. Up till now I have a very good employment record but I am concerned about taking a load of time off but likewise cannot see how I can carry on :-(

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I worked for same company for 20 years and was the same as you due to Government Cuts my job was at risk they asked for people to cut their hours to save jobs .

Its a stressful time no good for PMR

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No :-( but I am at least glad the sun is shining. Hope you have a lovely, long, relaxing weekend.

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Yes this sounds normal PMR behaviour. I am glad that you had a great holiday. You may find that you have to start again to remedy this. That is, back to 15 allow time for symptoms to settle. Take it more easy than you want to, then slowly taper by 1 mg a month until 10 mgs is reached, then consider half mg a month thereafter. The only cure for the deathly tiredness that I have found is sleep. A regular nap. Sorry, you are young, this is hard, but it does get better. 🍺

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Thank you Jane, a bit of hope is what I needed to hear. Kind regards, Mike

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Hi Mike :-)

Sorry to hear about your setback. Sorry also to say yes, this is typical of PMR. Back with more later about coping, although the others here have said pretty well most of it...

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Thank you Mark, enjoy your weekend :-)

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Hi, Mike. The phrase ‘carry on as normal’ jumped out to me, as it did with others. Unfortunately, you can throw that ‘normal’ out the window. You’ve got a new normal now, but sadly that normal changes day by day. What you can do one day, is problematic the next day. Besides being confusing physically, it’s also a bit if a mind-game. That’s why so many of us don’t make plans until the day of because we just don’t know what we are going to feel like on any given day. Fatique is a frequent companion, unfortunately.

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So true...

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Yes. Insight329 is absolutely right. It is almost impossible to plan ahead for me. I just never know how I will feel. I do have some good days but there are also bad ones. I am still working part time and am or was rather a very active 71.

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Take a look at PMRpros advice on pacing

healthunlocked.com/pmrgcauk...

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Thank you insight, will digest in a minute. Have a lovely weekend :-)

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There’s also Spoons.

rarainbow.wordpress.com/201...

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Hi Mike1964

Can't add anymore Mike as all's been said, only to say listen to what's been said, often we think we know best but not in this case - until you get to know your illness pace yourself. It's even more important because you have the worry of work and stress will not help your illness improve.

Best wishes

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I still work, too. I generally get home at 5:00. There are days that I wonder if going to bed at 6:30 is too early. I try to stay up until 8:30 or 9:00. But what a change that was for me as I used to stay up until Midnight on a work night. Crazy new normals!

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Lol, thankfully I've always been old before my time, 9.00 is plenty late enough for me these days. My sleeping is pretty poor I suppose, I'm often up at 4.00. In some ways thats my favorite time of day, utter peace and quiet :-)

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If you're up at 4am, take your pred then, as that's the time the inflammatory cytokines are released and you need to hit them as soon as you can, to control the pain as efficiently as possible.

Some of us take gastro-coated pred at bedtime so that it will be released into our system in the early hours. (You can't cut them to get small numbers, but they come in 5mg, 2.5mg and 1mg tablets - I'm assuming you're in the UK?)

Best wishes for getting a definite diagnosis from a sympathetic doctor.

I am retired, so can only offer my sympathy on the work issue.

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Hi Rugger. Sorry for the late reply, you slipped through the net! :-) Yes I am indeed in the UK, I'm lucky enough to live in Eastbourne on the South coast. I do take the Pred when I get up, as I say about 4 most days now. I've been taking the uncoated ones and cutting in half, have now been given some coated 2.5, maybe I need to take this the night before and the others in the morning?

Thank you for the support, kind regards, Mike

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My hubby always used to say that very early mornings were best, just you and Mother Nature - unfortunately very often spoiled when the humans appear!

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I think that everything has already been said Mike, and l do sympathise with you having to work with PMR. I could hardly walk across the room when l first had it,and l just did not feel motivated to do anything except lie on the settee all day,lt was very fortunate that l am retired ,PMR is so disabling but hopefully things will improve for you if you lower your steroids very gradually,l hope that you will feel much better soon,just try not to overdo things,l know it is hard to have to slow down when you were always so active,Best wishes Mike,make the most of the lovely weather and rest as much as you can.

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Thank you Grants, have a lovely weekend.

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All sounds horribly "normal" in the context of PMR!

The pred doesn't cure the PMR - PMR is the name given to the symptoms caused by an underlying autoimmune disorder and the pred relieves the inflammation it causes. That reduces the symptoms. The real disease continues in the background - attacking your muscles and other tissues causing symptoms a bit like flu would. That causes fatigue and makes your muscles intolerant of acute exercise. These sides of PMR must be managed by YOU - and pacing and resting appropriately.

These links may help understand:

healthunlocked.com/pmrgcauk...

You will learn how to manage it and it WILL get better - just not soon I'm afraid. In a year you will look back and see how far you have come but that isn't much help this week is it.

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Thank you Pro, that is an extremely helpful description, you have a gift - even I could understand it! :-) Have a lovely weekend, kind regards, Mike

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Thank you!

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Mike

Your issues all very familiar. I got bitten by this thing six months ago. I’m 73, but back cycling and skied lots last season. Cycled 30 miles yesterday and just off to walk our glorious Cotswold hills this morning

Not without some problems, but the endorphins from exercise and the satisfaction of achievement against the beast seem to do me good.

It takes time, frustration and learning some patience (the most difficult for me) but you’ll get there

Keep the faith 😊😊👍🏼

Pym

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Lol, my beautiful son did ask if I would take him for a bike ride today, I didn't really have the heart to admit I hadn't the energy to even walk to the shed to look at the bikes :-( But hey, I'm down today but certainly not defeated, I shall indeed keep the faith. Hope you get to make the most of this glorious sunshine, kind regards, Mike

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E-bike???????

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Hi Mike1964. Like you I am a recent ( 4 months ) sufferer of PMR. And like you, the symptoms were/are similar. My Doc started me off on a 30mg daily dose.( Pred ) and I have to say that my bodies reaction to reducing my ( Pred ) dose by half, ( doctor's suggestion ) was pretty severe and worse than the MPR itself. having said that, I am now off the stuff and going down a different route. ( with the doctor's help ) I actually feel up to staining the front gates this morning and will enjoy the sunshine while I do so. Have a great bank holiday weekend and I hope you get some relief from the dreaded PMR.

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Thank you Ta, hope the staining goes well. Boy I bet you did feel rough from dropping by half, even in my blissfully short experiences of this "Interesting" condition I've received more than my fair share of stupid advice from the medical profession! Good luck with your journey.

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You are now "off the stuff" Wow how is that going. So many people struggle just to taper, can't imagine coming off so suddenly

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I was diagnosed with PMR in March 2016 at 56. Took three months and loads of blood tests to finally decide on PMR. By that time I was crippled and had gone from a fit, running 3 times a week, Pilates, dog walking etc person to immobility. It was horrible and scary.

20mg and 24 hours and I thought I was cured! What a joke. I had no idea until I found this site. I have a supportive GP but the advice and tapering in the beginning were hopeless and I ended up with massive flare 6 months down the line. That’s when I started to take control, reading everything I could find and finding this site.

I have found this whole thing incredibly difficult, life changing and generally makes me cross!!

Fortunately I don’t suffer from the fatigue but just seem to be very sensitive to reductions. Currently on 10mg. Planning to stay here for a week or so. Off to Naples for short break so need to plan my activity level. As PMRpro points out we need to make adjustments and be patient - something I’m not finding easy.

I wonder if the youngsters on this site, by that I mean anyone under 60 😂 are hit harder? Do we find it harder to taper? No idea why but just saying.......

Stick in there Mike, keep reading advice on here and feeding back to GP or Rheumatologist. And try to take the right dose for your symptoms - recognising a flare or just a niggle is hard especially when you’re so keen to reduce. As the aunties here say it’s not a race to zero!!

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Hi from a 55 year old! I have seen a Rheumy who says I can't have PMR or GCA because of my age? See my reply further down to Mike, but as I await results, yes to answer you, I do get tired every afternoon, and walking gives me heavy legs, so I'm worried about getting a job, but I have to! I get annoyed that I've gone from an active 55 year old to a couch potato just since December 2017, and STILL don't know what is wrong! Rant over!!

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Hi Lochy, thank you for your reply.

"I have found this whole thing incredibly difficult, life changing and generally makes me cross!!"

I do believe you've summed it up perfectly there! :-)

But as they say "Worse things happen at sea" do you think they were talking about the Titanic?

Hope you have a brilliant time in Naples.

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Hi Mike, all sounds very familiar to me - I 'started' at 58 and have not been enjoying it since. I am in the military so an illness with a massive fatigue component - and not being able to jump up and down ladders is not too flash. I have managed by doing things in 'chunks' - I set my timer for 30 minutes, do something - then get up and move around for a few minutes and then do another chunk. The big thing for me is that at least one of the chucks is lying flat on my back for 30 minutes - not even sleeping, but relaxing prone seems to reset my system and I feel quite refreshed for the next few hours (then repeat). Anyway, that works for me. I did have to talk to the senior sirs to explain the illness and about this flexible routine - but I am lucky that there are not enough submariners around so I can do desk duties (or deck of office duties) for the time being.

There is some great advice in this thread, and on the whole site - get what you can out of it - a lot of experience and knowledge and then build that into a plan that works for you.

Good luck with it all.

Piers

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Hi Piers

Thank you for your support, it really does help to know other people understand. Blimy, can't say I would really fancy shuffling around a sub with this! :-)

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Well done for finding such a good system that works for you. I am very active and up and down ladders when necessary but I wouldn't be keen to be in the military just now with this annoying illness. Good luck .

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Hi Mike 1964

Know exactly where your coming from matey I was diagnosed in 2017 ended up having 4 monthis off work ended up in HR Department not sure they realy understand/understood the implications of pmr.

Like yourself still at work bit concerned on the fact I could lose my job although my work record is exemplary.

I ended up having a flare in 2018 3 months off work but feel it was trying to hard to soon but I'm not one to sit around.

And again like yourself I find the fatigue factor very frustrating and difficult to cope with.

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Hi Jura

It really is a bugger isn't it!

Thank you for your reply, again it's comforting to know other people understand, it can all feel a bit lonely.

I hope your getting the right help and support now.

Kind regards, Mike

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Hi Mike I've seen a Rheumy recently who doesn't think I have GCA or PMR, as I'm only 55! I had more blood tests and a chest X ray and am still waiting for results. I'm not convinced I don't have either but he wants me to come off Pred within 6 months then see him again! I am having to look for work and am worried that I won't be able to cope, as every day I get tired in the afternoon and sometimes have a nap. I just want to find out what I'm dealing with and you are one of the few I've found near my age! I've reduced my Pred from 25mg for a week and all OK so now trying 20mg, until I get to see the doc. She thought I have GCA, so not looking forward to going back to her to say "now what?"

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Ouch, it really is a disgrace how you get messed about, I hope you get the right diagnosis and support soon.

I also got hit with the "You can't have PMR as your not 55" interesting how they all have their preconceived ideas about what is set in stone regarding ages!

I remember going to see my GP 25 ago with a strange sensation in my ear, it didn't really hurt was just strange and wouldn't go away. He looked inside my ear and said "Goodness I must go get my colleague" he then shot out of the room and came back with another GP. I was getting slightly worried about this, the other GP also looked inside my ear and said "Your right, I've never seen that either" he then left. My GP then said "You've got ear mites, I thought only cats and dogs got ear mites" The moral of the story is; sometimes unusual things happen!

Good luck with the job hunting.

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My husband is very uptight about the age thing. A young colleague of his died because A&E told him very dismissively he was too young to have a DVT. Not after a kick on his calf during football he wasn't. It would have been so easy to check - and they didn't.

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How very sad.

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No normal with PMR...sounds somewhat like me, I’m at 11mg right now and getting there was not fun..stuck at 12 for some time, I almost gave up and went back to 13 or even 14...but “it” finally broke through and now I’m sitting at 11 contemplating 10...hand and wrist are my main problem, occasionally shoulders like today after two days of raking leaves...the nice sunny weather sure helps though..with the mood at least....haven’t had a melt down in weeks!!....no disillusionment of the PMR being gone though...not by a long shot....but at least I know what I can and can’t do and how it will affect me....and drinking a beer or two doesn’t seem to affect it one way or another...thank goodness for that...

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Lol, I'll drink to that! (Sorry couldn't resist) Enjoy the rest of this gorgeous long weekend :-).

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I will!! Suns out grilled chicken......ahh summertime..

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May I suggest a lovely garlic, chilli, ginger and lemon juice marinate on that chicken for a few hours then slap it on the barbie (Or indeed the grill) mummmm PRM what PRM (At least for a few glorious hours) enjoy :-)

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That sounds great,,this was cooked for us though..sports fund raiser thing....it was good stuff though, they did a nice job....can’t wait to start grilling now that the weather is getting nice!

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Oh dear I was diagnosed 3 weeks ago aged 59 and also was previously very active gym 2 times a week, Pilates and walking, I didn’t do any excercise for 2 months but since being on 15mg of Prednisolone have been almost symptom free except for nightly aches, walked 5 miles yesterday and 10 today without any problems but it appears this will change when I start to reduce the dosage which my doctor is intending to do at the end of the month when I have y next blood test, I will be interested to hear how you get on if you change your tapering as suggested. Good luck

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No - not necessarily, People who are fit when PMR strikes and are diagnosed quickly are often able to continue exercising although usually at a lower level. And if you reduce carefully with just small steps it is easier. Don't let your doctor bully you into rushing.

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Thank you I’m going to suggest to the doctor that the taper is no more than 10 percent I’m a bit worried as have a holiday coming up and don’t want to ruin it.

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Good luck - as we often say: It isn't slow if it works!

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Hi Janet, welcome to the club :-( It really does seem to be the strangest thing. I was absolutely fine for 6-8 weeks. I had the occasional day where I had no energy, 3 sometimes 4 good days then a slobby day, but suddenly BANG, now every day seems to be an iffy day. I have actually gone back to 15mg from 12.5 to see if that makes a difference (From today) Reading through all these posts (THANK YOU ALL YOU WONDERFUL PEOPLE FOR CARING, READING AND RESPONDING) it seems that some people do suffer extreme fatigue, some don't and as ever some are in the middle. Despite my constant moaning I am actually a great believer in looking on the bright side, I really do hope that your journey will be a smooth one. Kindest regards, MIke

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Thank you I am beginning to realise that it’s going to be a bumpy ride. It’s good that you have a positive attitude. Good luck with your tapering

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My fatigue has gone, along with the heavy legs after walking, but I'm only doing about 75% of what I did pre PMR. And I've learnt to sit down a lot more.

I'm only 52. Nearly 18months into this journey. 10mgs for the last month.

BUT I still have the hideous morning stiffness and can't get my arms up until the pred kicks in

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Hi Peggles. Thank you for posting this. Maybe we could do a swap for a few weeks? my fatigue is now ridiculous, I'm literally shuffling about the house like an 80 year old (No disrespect to the golden oldies!) each time I get to a chair I have to sit down for a rest. Have now been back on 15 mg for 3 days and it's getting worse and worse. BUT no morning stiffness and although my arms are now strangely made of lead and I'm always amazed that my muscles actually work because they feel like they wont, they do! :-)

You have to laugh don't you.

Good luck with your recovery and enjoy the sunshine.

Kind regards, Mike

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