Newly diagnosed with PMR

Hi everyone I have just been diagnosed with PMR a couple of weeks still trying to get my head around it all, it has helped explain things so much being able to read your posts, my Dr gave me some printouts to read explaining the basics, truthfully I have got a lot more advice and peace of mind from you guys. I had never heard of PMR and didnt understand what was happening to me suddenly the most basic task was a nightmare, I am on 15mg pred and they are helping , having trouble walking any distance and fatigue pretty bad but at least i know I am not just going crazy lol!

Anywho thank you everyone your posts have really helped, this is my first time on anything like this thanks for listening, its good to vent!

P.s I am 51 wow! cant believe I just told you my age

17 Replies

  • Hi Isabella.

    Welcome to this forum and it's happy band! I'm sure you'll have many questions as you go along so please ask anything anytime.

    I'm sure someone will come up with an answer! Of course, it may not always be the answer you want, but hey that's life. Hope things go ok for you, we like to hear good news as well as commiserate when you have bad news so keep in touch.

  • Thank you for your reply I will keep checking in it makes a difference not too feel so alone with this, thank you.

    Hope you have an amazing few days, beye for now

  • And welcome from me, too, Isabella! I'm glad that your starting dose of steroids is already helping with your pain - it will take a little longer for the fatigue to improve and your walking to get easier, but if we learn one thing whilst suffering from PMR and/or GCA, it is patience! When you do start to have better days, another lesson many of us have learned is not to overdo things on a good day as PMR has a habit of coming back to bite on the next. Hopefully, your Dr will have advised you to remain on the 15mg dose for at least 4-6 weeks to ensure that the inflammation is well and truly under control before reducing.

    As Dorsetlady has said, ask away if you have any questions (and you will!) and there will always be someone around to try and answer from their experience.

    PS Wish I was only 51!

  • Welcome! And I'm sorry you have to be here!! I'm 3 months into this new phase of my life, and it is a tough road. As Celtic said, the biggest adjustment is not overdoing when you do feel good. It's a difficult mental adjustment from being Wonder Woman to just getting by some days. Good luck as you proceed and we're here for you!

  • Isabella, At least you have now been diagnosed and it sounds like you have a good doctor who is taking an interest, which really is good news. I have never received any printouts from the medical profession. The only suggestion I got was 'Look on the internet'! I had never heard of PMR before either, but it was a wonderful relief to take the steroids and rid myself of the bulk of the pain. Did your doctor tell you to take vit D and calcium? It is a good idea as this can be a probkem with steroids. Also you should ask for a Dexascan as steroids can cause bone problems, although not always. As the others say don't overdo it, you need to rest more than usual, also don't overdo it, stop as soon as you feel tired. I found just after diagnosis I was quite weak as I had not been able to do much and my muscles had atrophied. Good luck.

  • Reading this is spooky, I was 51 (last April when diagnosed ) and otherwise healthy, never heard of PMR and it hit me out of nowhere. Five months in I'm ok so far, reduced from 15 mg Pred to 8 on the slow reduction pkan you see discussed here. You are spot on re: this forum, it's already made a huge difference in terms of me telling my GP ( I still can't believe I say that) what the recommended programme is meant to be. She'd have had me on bone-binders and all sorts without this forum's advice (see Piglette's advice on this below).

    One thing I would say Isabella to do ( if you are working, esp full time, like me) is to go to Occupational Health if you have one. I went through the process of 'officially' logging this and have recived some (small, but crucial) adjustments to my schedule; although I'm hoping it's straightforward this year to reduce pred/get remission, I just want the protection afforded by this. Good luck and please know you're not alone, at the 'young end' of the bell curve here! Good luck and best wishes.

  • Welcome to this forum. I know you will get good advice like I have had. I am pleased you seem to have a good doctor, they are worth their weight in gold. When I said to my doctor in the early days I was looking for information on the Internet his comment was you can't believe everything you read there. He, I am sad to say, has been no help to me whatsoever. Other than dish out the pills in the quantities I ask for. I am hoping to change my doctor but the practice manager has already kept me waiting 10 days for a reply! I await in hope!

    You will find you are very tired but listen to your body, cut corners, rest between chores and get others to do the harder jobs. This forum for me has been wonderful and I enjoy reading it every morning and learning new things about PMR.

    Take care, it will get easier.

  • Hi and where do you live?

    It is quite possible that there might be a support groups near you.

    If you follow this link, then click on the Grey part of the Map, it will take you to where you can find all the current support groups.

    You might like to explore that site as well and the site it leads you to. Both are registered charities.

  • Hi and welcome from me too - I was 51 when my PMR started but had normal bloods and was far too young - so I wasn't diagnosed never mind given any info! Though having read the PMR page on the Arthritis Society (Canada) I can only say - really don't bother looking and I hope doctors aren't using it. Arthritis Research UK is much better. But all of them are based on doctor's opinions - the forums are definitely patient-based and far more realistic and problem-solving orientated.

    Have a read of this

    and then try to apply it - warning alert: don't take extra spoons just because you have a good day because it will inevitably leave you with very few for the next day!

    But again - ask any specific questions and someone will have been there. Someone got stroppy at me on another forum because all her post was was complaining about being in pain all the time so there was little to say other than go to the doctor "All I wanted was info" she said. Fair enough - but about what?

  • Wow, that spoon story is powerful! Also, I have found all the best info I find on the web is from the UK.

  • Hi Isabella so I think we are in the same boat I'm newly diagnosed to had never heard of PMR I was first diagnosed with fibromyalgia but had bloods done found high inflammation levels was put on 30 mg preds for a month then had blood test to see if the levels had reduced, I struggled with side affects on 30 mg now on twenty have a blood test soon to see how it's going, have good days and bad, always tried too, it's nice not to feel alone, I've never done this before but I agree it's good to talk with other in the same position,

  • Hi Isabella

    I will not be able to help you as I only have GCA, diagnosed in March this year, and cannot comment on PMR, it is good you found this forum as the tips and advice people give are very good, as the others say all you have to do is ask you will be very surprised how quick these people answer your questions. I have learned at lot, not only what I have asked but just reading what other people have asked as well.

    I hope things go well for you.

    Take care


  • Hi Isabella,

    Sorry to hear of your diagnosis, but really good that it was quickly GP also gave me a computer printout on pmr when I was diagnosed last December, and it was through that that I found out about this excellent forum.

    One of the first things I did was to buy Kate Gilbert's book: Polymyalgia Rheumatics and Giant Cell Arteritis - a survival guide. You can get it on Amazon quite cheaply, and it is very good read. The other publication worth buying is : Living with pmr & gca, which you can get via Again, it is not expensive.

    Otherwise, I can but endorse the advice from other replies about remembering to take it easy, and not to taper down on pred said too is all too easy to think you are ok, but you can all too soon get a reminder that this is not the case! I think we have all been there at some stage!

    Good luck.

  • Welcome Isabella, I am sorry you find yourself with pmr, but glad you found this group. I am 3 yrs into the journey, and have walked many a rocky road in that time, but I have always found the support and advice here breathtaking. You never feel alone, and no question is too silly. I hope your path to recovery is a smooth one. Take care, Runrig 😃

  • Hi Isabella, welcome - although I wish you were not having to join us. I was diagnosed with PMR and GCA in June, I am 56, it was such a shock, I had not heard of either. So understand your comments on the PMR, mine wasn't diagnosed for 5 years, hence why I believe I also have GCA. Already 3 months into the illness, lots of learning for me. The initial feeling of wellbeing on the steroids, then tempered with side effects, lethargy etc. I now have a nap when I can, which I found really hard to do , not listening to my body, bit the other guys on here are right - you must listen or you will put yourself back. I work fulltime which is hard, but try and take it easy when I get in. This forum is great and there is always someone knowing the answer or understanding the problem you may have. I wish you well.

  • Hi not sure if this is any help but i tried Bowen therapy and although to the strangest thing ever it works as i am sure others agree .

    Alos i have been doing what is called a clean eating no refined sugar, rice, pasta,

    and almost gluten free now as i have a very sweet tooth and need to lose weight before i was on pred i am very pleased to say my love for sweetness is getting lower and i feel more energetic which my dog is very pleased about (as he was the one suffering )

    Kay ;)

  • Hi Isabella & welcome!

    I was 54 when diagnosed in Feb of this year.......don't know what I'd have done without this lovely lot on here. Frustration, tiredness, anger & sweatiness has all got the better of my temper at times but a good old moan on here has always been met with words that comfort & support.

    There will be good days & bad & you soon learn your limits & know when to rest & what helps you. Good luck in this uncomfortable journey & take comfort we are all in the same boat

    Pam x

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