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PMRGCAuk
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Info for new patients

I wrote this a few months ago to try and explain GCA/PMR in layman's terms to new patients, and have sent it out many times. But it has been suggested that I make it a stand-alone post rather than as a reply to a question so it's is easier to locate. So here goes.

It's what I've gleaned from my own illness (GCA, now in remission) and other patients' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise - except from a patient's point of view.

I hope it will help you understand your illness a little better, and enable you to control it rather than the other way round. If I'm repeating what you already know, then I apologise, and if my explanation is not medically accurate in every detail I take responsibility, but I hope it gets the gist of the illness across.

By all means let your family, friends or work colleagues read it if you think it will help them understand your position.

There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites.

PMR and/or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illnesses can be managed.

Many of us are never sure what caused the underlying conditions of GCA and/or PMR (physical and/or mental stress are favourites though along with hereditary factors -see Are we all Vikings - healthunlocked.com/pmrgcauk... - but having them means that your immune system is not working correctly and allows certain cells associated with your blood vessels to grow out of control. That can cause inflammation within your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

In PMR the most widely affected vessels are those in your main muscle groups - shoulders, neck, hips, sometimes knees.

In GCA it also affects the shoulders plus the larger Carotid artery that feeds your neck, head, and the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). This artery is very close to the skin, and can sometimes be seen as enlarged, plus it is where a biopsy is performed if necessary. (TAB). However, this is not the artery that can lead to blindness, that is caused by another branch of the carotid, the ophthalmic artery, which if affected can restrict blood to the optic nerve, and then partial, or total sight can be lost. If your Aorta is affected it can lead to strokes, aneurysms, coronary problems.

The only drug that controls the inflammation is Prednisolone (Corticosteroids). It does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Like most drugs it does have side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes, high blood pressure and hasten cataracts, but not everybody gets all or even the most common ones, and they can all be managed.

PMR and GCA does go into remission (except in very rare cases) but that can take a number of years, 3-4 seems to be the average, sometimes less, occasionally a lot longer. Unfortunately many doctors still insist it only last 2 years. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3 months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

The initial high dose (PMR: 12.5-25mg, GCA: 40-80mg) which usually gives a feeling of euphoria and should relieve at least 70% of pain takes control of the built-up inflammation, however your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation doesn't build up again. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

The usual plan is to reduce every month ( although every 2 weeks seems to be some doctors preference) but, and it's a big but, what looks achievable on paper, in real life it's very often not!

As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation, and you'll get a return of symptoms (a flare).

If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best.

See pinned post on right of page - Steroid Taper Web Application or

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

Recommended time to take Pred is early morning, with or after food. However as the cytokines that trigger the inflammation are produced daily around 4am; some people find that by taking the plain uncoated tablets around 2am or coated ones the evening before it is fully in their system by that time and it's ready to fight the inflammation.

When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or doctors surgery may have leaflet. You should also continue to carry card for a year after stopping steroids.

Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side. There are also local support groups listed.

There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

Look up 'Spoons Theory' on web, (butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease. You have to learn to pace yourself, that means resting. Most people find that fatigue is the hardest thing to cope with.

Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, Yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscles recover, and that now takes longer.

Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

As I said at the beginning a lot of information to take in, but if I condense it too much I can't give all the information I want to.

Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.

Take care.

84 Replies
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Great review! I feel so much better being plugged in! Congratulations, I just retired. My business is being sold to 5 men! I guess that tells me I worked too hard!

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Yes, but you must remember men don't do multi tasking!

Sorry chaps!!

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Men? Multi tasking? What's that?! ;-) :-D

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Well....,for some it's probably drinking a pint and eating a pack of crisps...or whatever! .

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That's because us men do one job at a time and do it properly :-)

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By heck mate....you believe in living dangerously! That’s fighting talk! Just remember you’re outnumbered on here.

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Ok, DL and Pastit

I would like to step-in as Mediator here. As Harry Hill says: 'there's only one way to settle this - FIIGGGHHHTTT!!!!. ;-) :-D

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Ha Mark, you should be on my side 😰😀😇

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Hedging my bets Pete - you can't under-estimate what the Aunties have up their sleeves. That said, I agree in that us 'Lads' could do with a bit more of an equal representation here! :-)

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Yep Mark, I second and third that ☺️😀

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That isn't nice - wishing PMR on innocent males...

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He’s obviously got a better sense of self preservation than you. Either that or he’s a coward.

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Hummpphhh... we'll see.. ;-)

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Is that FIIGGGHHHTTT OR fliggghhhttt?

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Yes I know, but I very much appreciated your script about explaining PMR/GCA so I have copied it to send to my brother. He and his wife just couldn't understand how I couldn't keep up with them on holiday. It explains it precisely in a way they hopefully will understand for next time.

Thank you DL

🤗😀😵

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Thanks for taking the time to do this- a great introduction!

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Brilliant! Thanks. Jerri

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Thank you Dorset Lady.

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Brilliant, DorsetLady (if I may say so).I am helping to support my Consultants new Assistant-Registrar to help with the background of PMR, she seems to listen! Do you mind if I show her your notes- again so brilliant, 'you can see the wood for the trees'.Scubadiver- must now get back to reading your notes again, thank you.

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hi DL

is there a way to keep this on top or should we just bump to top via making it popular. happy to 👍anytime to keep it visible.

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Hi,

You can always find it if you look at my profile and then Posts.

I did wonder about asking an administrator to Pin it, but thought that might be a bit presumptuous. But you could always start a petition!........no, only joking 😉

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I think it's really worth having it available. As I said a few weeks ago it helped my sister understand too.

I shall investigate. lol

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have messaged an administrator so we wait...

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I think the nature of how people access info here means you will still finding yourself sending it out as well so we win both ways.

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No problem -can always do a link!

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Exactly - I have posts with essential info on all 3 forums and at the very least I have to post the link every single time even on the 2 forums with pinned posts!

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Hi scubadiver,

Thank you for you kind comment. Please do share p them and if she has any comments - good and bad I would like to hear them. As I always say, I'm not medically trained, so if I have something incorrect then I'm only too pleased to put it right!

Hope you're okay at moment.

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Dear DL

Thank You so much for your very detailed and thoughtful post as a long-standing and respected PMR / GCA 'Aunty' - and someone who has an important story to tell.

As a PMR survivor (and honorary 'Uncle' here!), and although not an expert as such, I endorse you 100%. No doubt, your message will be welcomed by the many confused and anxious 'Newbies' who seem to be appearing on this forum daily, and who need some reassurance and clarity around all things PMR / GCA when so many family doctors (and a few specialists too!) seem to be floundering.

More than that, you bring bundles of humanity and humour in your contributions here alongside the more serious and technical / medical stuff - we all need this.

Keep up the great and dedicated work!

Best wishes

MB :-)

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Thx. Certainly agree on the humour front - as you well know 😊

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I still haven't got off the floor yet :-( from my last thrashing :-) only kidding :-)

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Thank you Dorsetlady I love this post. I'm thinking this would be good to ask my family and husband to read. I find it hard to explain my aches and pains and I'm fed up feeling tired but this goes some way to explaining why I am the way I am just now. Once again... Thank you

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It difficult to explain I know. And they're not really interested if you get too involved! But it may be enough just to 'engage' them!

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Hi Hollyseden, I had trouble explaining a condition that I had never heard of before (PMR) but I got my husband to join Health Unlocked as well. he was so enlightened that it helped us both. He also looked at the "Spoons Theory" about pacing and also the one about living with a Gorilla. There is another one but I forget the name. I too am in remission although I still have the fatigue due to another condition so have become very adept at pacing and rely very heavily on my wonderful hubby. Good luck on your journey you will get there at your own pace.

Gentle hugs Jannie

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Hi Jannie21,

This may help

healthunlocked.com/pmrgcauk...

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Thank you Dorset Lady I just could not think of them. I have now got them saved on my computer for future use.

Kind Regards Jannie

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Thank you. I don't think my husband would be 'enlightened' though, he is the worst kind of hypochondriac. Reads something and catches that lurgy. Seldom goes to doctor though, just moans to me about it lol 🙄 Not ideal for my stress levels. Think I'll just send him an email with Dorset Lady's explanation..... If I can figure out how to do it. 😋

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You can either send him a link from this page - although that means he will be able to read your comments!! Or maybe safer, and less likely grounds for divorce(!) you can copy my original post only, without comments, and then paste into an email.

If all else fails send me a message and your email and I'll send my original note! Don't give email on open forum.

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Thank you again! Well I did forward it to him but as he is even worse with technology than me I ended up just handing him my phone to read it 🙄

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And you're still talking??????🤔

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Hi Dorset Lady I like your new optimistic profile foto.

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Thank you DorsetLady, much appreciated.

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This is a great piece Dorset Lady. Thanks for sharing.

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My pleasure, just wish it wasn't necessary!

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I love the new photo!

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I love the new pic!

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Thanks DL❣️

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Thank you for this, DorsetLady. I'm in the process of being diagnosed, have read all the 'scholarly' articles I can find on the subject, but definitely the most useful information is on this site written by people who actually have the disease(s) and know what they're talking about from first-hand experience. It's a scary old business!

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Yes it can be, certainly when some (many?) doctors have so little knowledge of the illness and the sensible treatment of same.

Do hope you haven't got PMR or GCA, but if you have at least you know you'll get a response from us - usually reasonably sensible, always understanding and sympathetic, but sometimes dotted with a bit of humour!

Take care.

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I might send this to my GP anonymously and tell her to read it and pass it on 😂

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Thaks so much. I started taking preds about three weeks ago and feel so much better. I realise that I must have been suffering PMR for a couple of years (probably started when I had my cancer ops and radiotherapy) as I was getting increasing stiff and uncomfortable but thought it was just old age! Very helpful advice about tapering and adjusting lifestyle.

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Hi very likely that the trauma/stress ops etc triggered the PMR.

Hope you’re going along ok.

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Thanks. It's good to know as I don't otherwise have any stress in my life!

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I sent my original post to my brother who is a retired consultant (not rheumy) and he told me that my father suffered from GCA - which I was unaware of - so it is more likely that my PMR is inherited than caused by stress. Just added that info for completeness. By the way, I do find the posts here very helpful and hope perhaps that our doctors read them too as it seems there is much for them to learn!

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Hi,

Lots of people say they think their mother or father had GCA or PMR but it was never diagnosed as such. So in that aspect I guess we’re lucky in that we are treated.

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PMR is not an inherited disease in the usual sense of the word

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Yes, I guess they used to say - I feel very rheumatic-y today - and that was it.

I remember my father suddenly losing the sight in one eye - and I guess that was the GCA, but no one ever said so.....

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They probably didn’t know. He was lucky he only lost the sight in one if he wasn’t getting any treatment. Been there, got the tshirt, or maybe it should be the eye patch!

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Thanks for such a clear and detailed explanation! 🙂 MG

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Thanks DL

Have read this before but just wanted to say

A very succinct and understandable explanation aimed at the uninitiated.

Thank you for all the hard work you put into this wonderful site

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Thanks so much for the great overview. I had my last pred in 2008 and thought I was cured forever!! What a surprise to have this unwelcomed visitor back again.....

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Oh dear, so sorry to hear that.. only consolation I suppose this time around you’ll know all about it, although I think PMRpro has commented that if it visits again it can sometimes be quite different.

Take care.

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So far, so good-thanks again.

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Hi, l have only just been diagnosed with PMR, l am on 30mg daily prednisolone, which the first day of so was a miracle cure, but quickly went backwards, so much pain and stiffness in neck and shoulders in the morning, a real effort to get out of bed and get down stairs, but generally eases off after about 5-6 hrs of taking medication and cycle repeats after going to bed , is this one of the undisclosed side effects of just needing higher dosage perhaps, just wondered if anybody else with same symptom

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At a guess you took your 30mg dose and are now trying to catch up on all the things you didn't get done? That isn't the idea! The pred just manages the inflammation caused by the actual illness which is an autoimmune disorder which causes your immune system to attack your body tissues by mistake, thinking it is "foreign". That is still chugging away in the background and makes your muscle intolerant of acute exercise. To manage that you have to learn to pace and break tasks up into bite sized pieces with rests between.

healthunlocked.com/pmrgcauk...

However, "cycle repeats after going to bed" - what time does your pain start? And what time do you take your pred?

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As soon as l take breakfast about 8.30 am, all in one single dose, but l only been on the steroid for 5 days, l been taking naproxen for years though

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Pain is there the minute l wake up

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Hi Pat,

Would think like PMRpro you are trying to do to much maybe.

It’s quite common to have some pain first thing in morning and until the Pred kicks in (uncoated is usually a good hour or so, coated even longer) which is why some take it as early as possible.

But on 30mg you should be getting a better response than you seem to be. Try a few days resting as much as possible and see if things improve.

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Hi Pat, if you are taking pred it is recommended that you should not take Naproxen too, as it can affect the stomach. Also Naproxen has little if any effect on PMR, it is just pred or pred for PMR!

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I take the naproxen for poly arthritis which l have had for 40 years, l take Omaprazole along with that as it is gastro resistant and should protect the stomach allegedly, l have tried coming off this but then all my other joints flare up. The PMR only started just before Xmas and totally different to anything l experienced before, agony moving my neck\head until it loosens up, but l living in hope of getting back to some sort of normality

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Try taking it as early as you can - the sooner after 4.30am you take it (that's when the new batch of inflammatory substances is shed in the body) the less it has to do and the sooner it will work. And REST! If you want to do something - go for a gentle walk and if you have to do things in the house, do 5-10 mins and then rest for the same.

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Just on your saying rest, l would just say that the doctor l saw said nothing about that, and given that l told him that l am in the middle of refurbishing my daughter's house and am not one to give in to pain and discomfort, something l have failed on this time as just physically not able to do it at the moment, and so tired as well. The doctor said he was running out of options with painkillers and muscle relaxants, tramadol being the last throw it the dice, but l kept saying they did absolutely nothing to help, and it was only when l asked about PMR that he thought it was a high possibility and then put me on the steroids, no advice at all really but l suspect this is something for a specialist and to this end l have asked to be referred to a Rheumatologist asap

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Good luck to you if you get much sense out of your rheumy either! Far too many think that once you are on pred you are "back to normal" and can do all your normal activities.

I'm afraid that is NOT the case.

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On dear, well thanks for your advice etc, at least l am a lot more aware of what l am dealing with and that l am definitely not ,on my own in this, by the way seeing as the doctor not very forthcoming, is there anything recommended to be taken alongside the steroids that l could purchase such as vitamins and additives to offset osteoporosis if on steroid for a length of time, thanks again, much appreciated

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Hi Pat

You should be prescribed VitD & Calcium supplement - usually Adcal in UK. Apart from that eat healthily -particularly foods that help bones -oily fish, leafy greens etc and do some bone strengthening exercises (but not overdoing I!)

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All that DL said - plus try to keep walking as much as you can. Don't overdo it but half an hour a day at least has a lot of benefits!

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Thank you for all this info. I’ve just been recently diagnosed and feel as if a rug has been pulled out from under my feet, so it’s great to get support from others experiencing PMR.

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Hi. Yes life does feel like that, but you’ll get plenty of support from everyone on here.

Take care.

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I was diagnosed in Jan 2018, and have read this several times. I always learn something new. Thank you so much!! Diane

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This is great — well explained, thank you!😊 would love to have as a PDF to re-read, Mark & annotate. Will try copy, paste. Thanks again!!

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If you have a problem I can email it to you, just send me a message (not a post on open forum) and your email address.

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Ok, thank you

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Thank you for this , it’s a superb piece and I will print it out for my partner to read . He’s very supportive and has already read up a bit on the net . Life feels a little less daunting once you have good information to hand. Early days though .....

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Just remember - take each day as it comes, some will be better than others, and we’re always here!

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Thank you DorsetLady for such an informative post..

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