Newbie: Hi everybody, I'm a newly PMR diagnosed 5... - PMRGCAuk

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chess430 profile image
chess430

Hi everybody,

I'm a newly PMR diagnosed 55 year old and struggling a little to get to grips with the diagnosis. I'm glad I've found this forum - reading the posts is already helping :)

41 Replies

Morning Chess430It’s not a club that anyone wants to join, but welcome nonetheless.

It takes a while to get used to the diagnosis and to living in a way which promotes well-being as well as taking into account potential pred side-effects but it’s possible to live a pretty normal life once you get used to it.

Thank you for your welcome - it's much appreciated :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome

Have a look at this general info post - healthunlocked.com/pmrgcauk...

And then at the the FAQs - but there’s always someone here to answers any specific queries.

You may find your working life a bit testing to start with ....but hopefully you have good staff around that can support you as needed. But it won’t be easy..you do have a serious systemic illness which needs to be managed.

You are youngish and obviously normally fit which will help - and life does go on, albeit not quite as you would like!

chess430 profile image
chess430 in reply to DorsetLady

Thank you - the support received on here and the info is really helpful :)

Hello there chess430 and welcome. It can be very overwhelming when you first receive the diagnosis and we've all been there! Fear of the unknown and uncertainty about what the future holds together with a whole host of other related concerns can completely 'blindside' us and leave us confused and bewildered. These are all normal and understandable reactions and are usually shortlived as we learn and become more familiar with both our condition and our meds.

You'll read lots about people's symptoms and side effects that can at times feel quite alarming....just remember though that you won't experience all of these (if any) yourself and your journey will be unique to you.

Try and learn as much as you can about the condition and medication as this will then allow you to make more informed choices and decisions. The steroids are definitely not drugs that anyone particularly wants to have to take, but most of the side effects can be addressed quite successfully and managed appropriately and they don't have to be feared as much as you perhaps think. ....this was a welcome revelation to me!

A couple of very important pieces of advice:-

- always pace yourself and don't try to push yourself further than you're capable of! Most of us have learnt the hard way that this doesn't work! Rest, rest and more rest is key to how well you progress in your recovery.

- don't taper down from the steroids too quickly....you're NOT trying to get off the steroids as quickly as possible....you're trying to get to the lowest dose possible that still manages the inflammation the condition is causing. So, the slower the taper, the better the success rate. Just be aware that even when the steroids are working and you're pain free, the condition is still active, it's just under control. Steroids are not a cure!

- be aware that many of the medical professionals you'll have to deal with do not always know best and frequently don't fully understand either the condition or the appropriate use of steroids. The more informed you are then the more convincingly you can contest any decisions you don't feel entirely comfortable with. Remember....your body, your choice!

- most importantly..TRY NOT TO WORRY! There are many worse conditions we could be suffering from and PMR has a good chance of burning itself out eventually for many people. We just have to be patient and take good care of ourselves.

There's lots more I could tell you but I don't want to bombard you with too much information that you can't process properly. There are some very useful links and others more experienced will be along with further information and help.

You'll be ok, and there's lots of reliable and trustworthy advice and support to be found here to help you along the way. 🙂🙂

chess430 profile image
chess430 in reply to Kendrew

Thank you so much for your reply - I'm so glad I found this community as I was feeling incredibly isolated. Your support means a lot :)

Kendrew has made some really valid points. There's a book by Kate Gilbert who outlines the basics but there is also a wealth of information on this forum. When I was first diagnosed with GCA & PMR I decided not to look on the web as I thought it would be all doom and gloom. However, probably because of Covid, I was left high and dry by all the doctors and felt so very confused and frustrated. So I turned to this site. It was the best thing I'd ever done! Loads of info and practical advise given by very sensible people. I wish you a good recovery chess430 but it may not be speedy and you really do have to be kind to yourself however frustrated you may feel.

Shiba64 profile image
Shiba64 in reply to chess430

Hi I'm newly diagnosed too (57 year old) and like you it is hard to get your head round it all!! I'm glad you posted as the responses are amazing and Kendrew your reply has also answered a lot of my questions 😁😁 Thanks so much. It's hard to go from being fine and then to adapt to the condition and I must admit I struggle with the needing to rest! But it's true you do - I'm feeling bit worse this last week than I have previously and now know its because I've done too much! And when you think of what might be too much it's not always what seems obvious - I work at home upstairs but think that going up and downstairs (I'm trying to walk up normally as opposed to one step at a time) I've overdone it a bit!! But guess I've learnt my lesson 🤣

So take it easy, rest when you can, don't overdo it and most importantly look after yourself 😘

And I agree this forum is great!!

PMRpro profile image
PMRproAmbassador in reply to Shiba64

I've posted elsewhere recently about how moving from a large house with toilets on every level to a smaller one with one toilet upstairs and kitchen downstairs meant I had to give up a lot of other things to cope with the stairs! At the same sort of time, being here in my one level flat with a lift alternative to the stairs meant I could walk to the ski bus and spend the morning doing a bit of skiing!!

Shiba64 profile image
Shiba64 in reply to Kendrew

Your response to chess340 has helped me no Ed - I was going to post too but you've answered some of my main questions 😁

Kendrew profile image
Kendrew in reply to Shiba64

I think we all experience this condition in many different ways but some aspects of it prove the same for all of us. It can be a scary time at first but most issues that pop up can usually be sorted eventually. We'll all have good days and bad days but a day only lasts 24hrs! 😀😀

Welcome chess430

It does get easier once you work things out such as how to pace to avoid flare ups. Your job, I'm sure, is very busy and you may need to step back a little while things settle down.

Read all the fab FAQ's, they are so helpful. We are always here if you have specific questions though.

chess430 profile image
chess430 in reply to Coffeebeans

Thank you so much - it's a great comfort to know there are people around offering support :)

Good morning chess430, I do love the avatar names people have here, anyway welcome to the forum, think everyone else has covered all the relevant things for the moment. You are one of many present and retired teachers on the site. Always someone here to offer advice or to just listen when you feel in need of a rant.

chess430 profile image
chess430 in reply to Bcol

Thank you so much for the support - I'm really grateful. Watch this space!

Hello, chess430. Many useful comments have been made but I would like to add , and emphasise, that it is likely that you will need to rely on your deputy for extra support. He/she will need to know about PMR and its effects on the body and the likelihood that you may not always be able to fulfill what is required of you. In my opinion the governing body should also be informed: the rest of the staff, as you see fit.

PMR came along for me after retirement from teaching but I remember well the demands and pressures. As a headteacher those elements of the job are multiplied. Please don't struggle to manage everything asked of you because you don't want to pile pressure on others and don't be guilt-tripped to push yourself further than you are comfortably able to manage. As far as possible, make the early starts and late afternoons a thing of the past if you need to-or at least some of them.

The main message I want to convey is 'listen to your body'.

I do hope your journey is smooth as you go forward.

chess430 profile image
chess430 in reply to 123-go

Thank you for the advice - it's very much appreciated and clearly you understand. I'm going to try to take the advice and be sensible - it will be a first! I'll keep you posted.

123-go profile image
123-go in reply to chess430

Great! 💐

Hi chess430. Welcome to the best health forum in the world (probably 🤣). Yes it isn’t one I wanted to join but here I am and it’s been brilliant. I am also very recently diagnosed and pred is working slowly and reducing my pain. The info and support on here is amazing and most important of all it is based in experience and expertise of people with PMR/GCA and evidence from research. And I have noticed respect for all. If I am worried about anything I check here first (and on PMRGCAUK web site - do join if you haven’t they need the support and we need them). My main issue apart from physical pain and tiredness is dealing with the head trip that is the changes I have to make to my life aspirations as have spend lockdown loosing weight doing C25k kayaking and generally becoming a bit of a jock as the Americans would say. And was looking forward to a very outdoors and active life. Ho hum. Now working hard at dealing with the emotional/ psychological side. This site helps me feel more in control though. Good luck with your journey.

chess430 profile image
chess430 in reply to Grannyasbo

It's tough isn't it? The support on here is amazing - I've really been welcomed and that has already helped. Slowly does it...(not something I'm used to!)

SnazzyD profile image
SnazzyD in reply to chess430

Ha! I think nearly every one of us was a previous whizzer. Having to slow life down jostles for first place with pain control in the list of most important things.

PMRpro profile image
PMRproAmbassador

Hi and welcome!

Interestingly, I've just had a very relevant discussion about support! I was sent a book of cartoons recently for comments. It was a set of cartoons someone had drawn in response to her experience with PMR. Apparently all of us who are involved with either support groups/forums and with research assessed it as being too negative - there was not a single positive aspect at all. It really wasn't a book to hand to a new patient because it was SO depressing. It would greatly benefit even the better than average doctor but definitely should be compulsory reading for the ones who think PMR isn't as bad as it really is, pre-pred at least! It conveyed the pain, disability, the concrete legs, everything really well.

I don't suppose we have an artist amongst us who could portray living with PMR with the right management and support is there?

chess430 profile image
chess430 in reply to PMRpro

Thank you for the welcome :)I wish I had the artistic talent but sadly don't. It sounds like a great idea!

Rugger profile image
Rugger in reply to PMRpro

I was sent that book of cartoons - say no more about it! 🤯

I'm sorry I haven't an artistic bone in my body!

PMRpro profile image
PMRproAmbassador in reply to Rugger

Had an interesting conversation with Amy about it ...

Welcome!

I was 55 when I was diagnosed...and in shock! Had a difficult time getting to the “acceptance” stage. The early months are the most challenging I believe, and I will say, 3 years in now, I’m dealing with everything much better. You will make necessary adjustments, and realize what you can control, and what you can’t. Listen to your body, and utilize all the fine folks on this forum who “get it” (better than most who don’t have a lived experience of PMR/GCA).

chess430 profile image
chess430 in reply to PMRCanada

Thanks so much for the support and I agree - acceptance is really hard but finding this forum has been an absolute blessing!

Hi Chess430. People on this forum and pred will become your new friends. There’s lots of advice and help available from some very knowledgable people.

Thank you 🙏

It’s good to get as much info as possible from this forum - website - and PMRGCA UK now do zoom talks - Kate Gilbert’s book on PMR is helpful - good luck

Hi there chess430 and welcome!

I think most info and great advice has already been given. But just to add, don't expect too much at the start once taking the pred; not everyone is completely pain free, some maybe, but others including me, have always had some stiffness or aches whilst on the pred. I think I've read somewhere that we should be feeling a difference of 70% once we begin the meds. So if like me that's you, well, it's OK! Oh, and I too teach, reduced my hours and had a risk assessment done, it's helped enormously. All the best!

Thanks for the reply and support. The pred has helped a lot but still suffering very bad morning pain and stiffness but I am aware it's still early days and trying to be patient!

You’ll be delighted you found this forum it took me several months after diagnosis to discover it and it has been a life saver. So much support and thoughtful and considerate advice. I was 56 when diagnosed after a few months of ‘ you’re too young for PMR!’ I had no idea of the journey I was about to embark on, I genuinely thought I’d take the pills and all would sort itself out in a few months. What a rude shock I had and that for me has been the hardest thing to deal with. Fortunately for me I wasn’t working. A head teacher is a demanding job so do think of yourself as much as you can and delegate if at all possible! I was a keen runner, golfer, Walker and generally active person so couldn’t understand why this has happened to me. Many of us are similar. I’ve read a lot about PMR and have become a pretty good advocate for myself with my GP and rheumatologist. I’ve had many ups and downs and have tried quite a few different drugs as I have struggled to taper but after 5 years I feel that prednisolone is the one that seems to work the best for me but I just can’t taper as quickly as the medics would like! But I’m better at dealing with that now. Take care and remember there’s always someone on here happy to help.

chess430 profile image
chess430 in reply to Lochy

Thank you for your message and support. At my last medication review three weeks ago the GP refused to refer me to a rheumatologist. I have another review tomorrow - I'll try again and hope for a different answer!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to chess430

In straightforward cases of PMR a good GP is quite able to manage your illness...but it recommended that you see a Rheumy once just to make sure. But in these times, that may be easier said that done ....PMR is not high on their list of priorities.

Even back in 2012 It took me a few months to see a Rheumy with my GCA and that was far from straightforward! But I think that was a local issue rather than a national one...and I did have a definite diagnosis!

Morning I was diagnosed last September at 56 (which I believe is young for this condition) I too have struggled with it, It has changed my whole life, as I was reducing the meds I became depressed something I have never had before, but 3 months on I am feeling loads better, back to my normal self, I have reduced from 15mg to 7mg now and can't wait to get off the meds, I just want "me" back again, good luck and I am here if you need me x

chess430 profile image
chess430 in reply to Littlejan22

Hi Littlejan22 - thank you for your message and support - it's very much appreciated 🙏

PMRpro profile image
PMRproAmbassador in reply to Littlejan22

Doctors may think it is young - over 50 is the official age although that doesn't mean it doesn't happen younger. There are a lot on the forum who were in their early 50s when their PMR started - and that also doesn't mean they are in the official figures because many of us weren't diagnosed until much later.

Welcome chess430, my husband newly diagnosed too. His very painful, almost stroke like symptoms began 11 days following the Astra jab. As you are quite young to be diagnosed, and there are many newly diagnosed people appearing on this forum, I am wondering if there could be a link? Looking at the Internet (as you do when newly diagnosed) , it appears there is a trigger with the flu jab, so it's not entirely inconceivable that there could be a link too. If your symptoms (and others) did occur between 10 days and 4 weeks following, it may be useful to report your case on the Yellow Card system at Gov. UK / Covid. If there is a trigger link, it may also effect the treatment timescale perhaps? I too am very grateful for this forum and the useful information I have read here.

chess430 profile image
chess430 in reply to Genesini

Hi Genesini -thank you for your message. It's certainly something worth considering. I'll go back and check the dates. I hadn't given it any thought before. I have had both jabs - Astra. Interesting...

PMRpro profile image
PMRproAmbassador in reply to Genesini

There has been a steady flow of newly diagnosed patients since before the vaccine rollout - but the same applies for the Covid jab as any other jab: there is no single cause of PMR, it is most likely the culmination to a series of insults to the immune system over years and eventually one is too much and the immune system flips out. The insults can be due to trauma, illness, environmental and chemical things, life events and stress - with a dollop of genetics that make it more likely it will happen. It isn't a hereditary disorder though.

Yes, there have been some new diagnoses and flares after having had the jab - but the chances are that if the jab hadn't done it something else would have. Or some people would have experienced nothing with the jab - but having an accident, operation or extreme stress in a few months time might do it.

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