Hi everyone. I'm newly diagnosed with PMR and learning every day about this 'thing' that I've got and never wanted! I'll be very grateful for any the advice and support
Hello: Hi everyone. I'm newly diagnosed with PMR... - PMRGCAuk
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ttabby22
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I would keep asking away here and get to know people in the same boat. Also! you may be tempted to buy a book on PMR/GCA if so the one in Amazon books was a must read and refer to in my first year. The author is Kate Gilbert. Good for dog ear pages and sharpie highlights to look back to or point out to a loved one.
in reply to
Link... amazon.co.uk/s?k=kate+gilbe...
Hello, ttabby22. Welcome to the forum. You will receive lots of help and advice here. It's all a bit overwhelming at the start so ask questions whenever you feel the need. As a start, click on the link where you will find useful information posted by DorsetLady, one of our 'experts' and volunteers:
originalText
healthunlocked.com/pmrgcauk...
I hope the link works this time!
Thanks to both 123-go and davidcantswim for the prompt responses and the encouragement! I think I'll need it!
Thanks —been out early to collect couple of parcels before tge hordes arrive…..
That sounds ominous😂😂. Have a jolly time. x
Not hordes to me personally, just to Dorset! 😳..intending to have a quiet weekend…boring, I know …and get out and about again when things have settled…
🙂 Not boring at all! Very sensible.
It is a new bug that HU have introduced: if you edit a post a link doesn't go up second time round unless you re-enter it. In their usual helpful and efficient manner (NOT) they saw no need to tell users ...
Neither have they deemed to answer the question -but will nag again as there’s another odd things as well in the alerts (know you don’t use often)..not a great issue just odd!
Oh do tell ...
PMRpro
If you’ve linked another member in first few works like above -it doesn’t give name as it used to -it gives a number instead! Obviously just another glitch 😳..as I said just weird..doesn’t fill one with confidence…
It is telling me that you have mentioned me in this thread ... You haven't been consigned to mere number yet 
Probably been barred! I got one this morning when I mentioned another member … how bizarre! See below …
If there is one word to apply to HU it is bizarre ...
That’s more polite than usual ….
DorsetLadyPMRGCAuk volunteer
Hi and welcome,
My info post has already been linked by 123-go - so not much more to add except have a look through the FAQs as well, but don’t try to take in too much in one go…work your way through slowly. As obviously if there is anything you need to ask, just ask…
FAQs -
Hello and welcome! You’ve happened upon the best place for information and support. 🌻
Hi ttaby22,
So much I could say but for now, best thing I can probably tell you is to not be scared.
It feels overwhelming at first and there seems so much to understand but it's frequently not as bad as you imagine it will be.
Just take your time to read the info you've been guided towards and ask as many questions as you need to..... there's always someone who'll respond.
You don't need to rush anything. One day at a time.
PMRproAmbassador
Avoid the BH crowds and read the FAQs to pass the time! If you can't find an answer there - ask it as a new thread on the forum (not in the middle of an existing thread as only DorsetLady and I are guaranteed to see it) . There is always someone around 24/7 as it is an international group though most of us are in the UK/EU. If you are flumoxed - ask!
What’s BH. Can’t think of anything . Please 🤓😊
Bank Holiday
Of course, was trying to think of something medical. Overthinking or brain fog 😶🌫️
Hi ttabby22, nothing new to add to the replies already given, so welcome to the forum.
PMR is life changing so treat the PMR correctly and you will be fine. Have you had a Dexascan and also have you been prescribed vitamin D with calcium? The PMR mantra is rest, rest, rest (and pamper yourself!)
Hi I've not been advised on calcium or vitamin D ?
A supplement of VitD/Calcium should be prescribed when you are prescribed Pred -to protect bones. Dr. hasn’t read guidelines 🤨…
Okay thanks will be making a call!! Xx
Has your doctor arranged a Dexascan?
No no mention ?
The guidelines recommend you should have a Dexascan if you are on long term steroids (over 3 months) along with vitamin D with calcium. You may have to ask as there is quite a waiting list. academic.oup.com/rheumatolo...
Will put it on mylist Thank you
Sending you a warm welcome….glad you found us. I found this forum invaluable, especially in the early days after diagnosis. Feel free to post your questions or concerns and this compassionate, informative, supportive bunch of folks will respond.
Hi and welcome! I echo what everyone else has said....you're definitely in the right place to ask away and get the reassurance and guidance you need as you plod along. I found this forum invaluable, especially in the early stages. All the best! 😀
Kate Gilbert’s book also available on Kindle and PMR website and forum good and join charity to get mag and zooms and make it your charity on Amazon Smile - Good Luck
This is a WONDERFUL forum. I have relied on them completely. Useless rheumatologist. A helpful but uninformed GP. The things I wish I had been told when diagnosed (but learnt from this forum) * be patient, it is a long haul
* eat a carb free and sugar free diet as the pred will make you put on weight and can tip you into diabetes(no potatoes, pasta, bread, etc)
* take vitamin D3 and K2 daily and eat a calcium rich diet (have a DEXA scan)
* cream your skin (it thins with pred)
* don't worry if you do get a moon face, it will go away
* don't worry if your hair drops out (I am promised it will grow back)
treat yourself with a great deal of TLC
I was diagnosed February 2019 - I am also 69 . This site is invaluable as you realise there are numerous PMR sufferers out there and you are not on your own . It is brilliant and to hear others suffering the same symptoms/ in similar situations can be very reassuring . You are NOT on your own : there are many ‘experts’ on here who can put your mind at rest.
Welcome. Health Unlocked is a great help to people on their PMR journey. People speak from their own experience. Doctors will help with monitoring it, but as an auto-immune disorder it comes and goes in its own time. Steroids have their side effects and if you suffer with these too much it will probably be good to increase your steroids slightly, or if the symptoms are not problematic, these could be decreased, after consultation. with the doctor. The doctor or rheumatologist will suggest a tapering regime, but this should not be too rapid. Your body will in time dictate when or if to taper. I have had excellent advice on this forum regarding tapering.. I had jaw pain at one point, but this subsided with a high dose of steroids and I was immediately told to taper again by the doctor. After a few ups and downs I am now on 6mgs after 2 and a half years. I feel very tired, but that does come with the territory. I have been able to carry on with my normal life, but you do have to avoid strenuous tasks that can result in 'flares'. It is necessary to pace yourself. I'm retired, so things are easier for me to manage. For example if there are heavier gardening or household tasks, these are done in stages or delegated😀. Most of my problems have been sorted out on this forum and you will be fine. You will get to know some very nice people too.
Hi ttabby22, welcome to the forum. The forum has been invaluable to me over the past two years and I’m sure it will be for you. Take each day at a time and don’t think too far ahead. PMR has its own agenda.🌺🌺🌺
Hi. Check out the links and FAQS on this site to give you a grounding. Ask any questions after that and it’s highly likely we’ve all asked it before. Don’t worry you’re in good hands. Number 1 are you resting? That’s the main thing in the early days. 😎
HiThis forum is a god send I'm newly diagnosed and its helped me in so many ways so welcime
Hi there! Well you will get all the support you need from this crowd! Welcome! You are in for a rough ride but you will succeed in the end. Keep smiling.
hi ttabby22. Sorry you’ve had to seek us out, but it’ll be the best thing you did.
I’ve had PMR for 2.5 years now and stumbled on this forum by accident. There’s always someone who’s got an answer - or a bit of encouragement- for you. Plus the support is always second to none.
Onwards and upwards is what I say.
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