New member just diagnosed with PMR

Hello from Scotland. For 6-7 months I complained of getting up in morning feeling battered. Got to the stage I couldnt lift my arm in morning to answer the phone, scary when you live alone. Was sure I had Fibromyalgia , or maybe just getting older .. 57.. Eventually saw a new doctor, she said I'm sure this s PMR , Id ever heard of it . Bloods done and yes it was confirmed . I'm now on day 5 steroids. This is the best I've felt wakening up , still a struggle to get up but what a difference shown already. I came across this group and so glad as I can learn from your experiences and identify with many I'm sure. I'm on the 3 x 5mg Prednisolone mornings . A bit concerned about the long term of being on them, side effects etc . I will learn..

25 Replies

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  • Welcome and yes I think this is a wonderful site ,shared information and moral support .I am glad I found it .

  • me too, you dont feel so alone anymore not having a clue what it was.. thank you for welcome..:)

  • You know there is a Scottish charity too?

    PMR-GCA Scotland: pmrandgca.org.uk

  • thanks have been in touch with them..

  • Hi kiltylyn, welcome to the group. Where are you in Scotland? I'm in Perth and Kinross and member of the PMR/GCA group that meets in Dundee monthly

    You will find lots of very useful and interesting info on this site, lots of very knowledgeable and supportive members. We have all been there and know how it feels! indeed a long, for most, journey ahead

    Good luck with steroids and remember that yes there are side effects but the inflammation in PMR is is the thing we need to defeat

  • Hi Nannie , Im in Dundee, a meet in Scotland thats wonderful to hear . I sure would love to attend the next one. Yes I will learn a lot here and the support is important for me. Your right the the pain had to get under control and at least this morning I felt that bit improvement getting up . A long journey but dont feel alone anymore.. :)

  • Hi kitylyn,

    I'm in Scone so not far away

    The next meeting is on Aug 16th in the Lounge of Dundee Parish Church (St Mary's, entry by the door opposite Primark, it's between 11am and 12 noon. I have only managed one meeting so far but it's very friendly with lots of helpful people there plus you get a cup of tea and a biscuit!!

    Hope to see you there C

  • I will really try and get there , thank you for that , will jot it in diary..

  • How do you know if is effecting your heart my crp was high now on antiflammatory diet?? Vision?

  • If you really want answers to this alexmarie you would be better to start a new thread. Only people who have clicked follow in this thread will be notified of your post - probably not very many!

    I developed atrial fibrillation - I had symptoms that I didn't recognise until I was in hospital for something else. CRP can be high because of heart problems - but it is a differently measured one, a more sensitive test.

  • Hi, I found it such a relief when I was diagnosed and started on steroids, they really are a wonder drug in spite of having side effects. You should take vitamin D and calcium supplement with them, did your doctor mention this? You should also get a Dexascan to check your bone density, as steroids can cause osteoporosis. Your doctor can organise this for you too. Otherwise take it easy and pamper yourself, PMR can be intolerant if you overdo things.

  • I remember you saying pamper yourself . I live alone, had a flood in kitchen 2 days ago, leak under sink, you can imagine the carry on trying to get the water soaked up mostly bath towels . What a day that was , couldnt get the water off so made it worse. The clean up took me hours. Then the washing machine had packed up same day , anyway some of the towels had got bleach on them so yesterday took the heavy bags down to bins. Plus a load of washing to do at dads.. Today on awakening I was stuck , pain excruciating trying to get out of bed again , I was gutted, then it clicked the words you said PMR intolerant of doing too much. I guess this is what happened to me ... I must pay attention to this in future...

  • You lifted heavy things, you did something that would leave you feeling fairly sore if you were healthy - but you have PMR, No-brainer!

    I had an experience like that while were in Canada - they have low water volume toilets that apparently have a habit of blocking very easily. One in our hotel room obliged - it was, mercifully, clean water but the cistern didn't switch off filling, it just ran and ran and ran. As a foreigner I had no idea at all how the system worked - it was luck I looked down and noticed what looked like a tap on a flexible metal pipe on the wall behind the toilet. Major relief all round - but there was half an inch of water on the floor and flowing out to the carpet! Their towels - and the receptionist brought more - than goodness.

    Why throw out towels because of bleach marks? I keep them for this sort of job. In fact, I have one towel still in regular use that my darling daughter used when dyeing her hair - big brown stain that won't come out but it is an expensive and very good towel.

    Hope you feel better tomorrow! But it may take a bit longer.

  • Have been having a major clear out as house hunting. Some old towels kept , just in case , Im involved in cat rescue so they are ideal for pregnant mums giving birth on. I panicked , couldnt get the water off , just put anything under sink to soak up the water, some cleaning supplies ruined with water , bleach blocks, cistern blocks paper around them sodden . NO machine to wash or spin them so out they went. I was only diagnosed a week ago , know very little about the condition. If i had thought that work like that would cause a flare up I wouldn't have done it. This group for me is to learn about the do's and the donts... A year ago work like this wouldn't have affected me one little bit.. Time to change...

  • Afraid so - but it doesn't mean you won't get back to managing something like that in your stride eventually - I do. But I've had loads of practice and ignore anything I can besides! Luckily I've never been houseproud - and if people don't like it, they can do the other thing!

    Funny how appliances know the worst possible moment to play up isn't it? Mine are all 10 years old - I'm beginning to twitch at anything out of the ordinary, thinking they are about to die...

  • My experience is very similar to yours. I was diagnosed a few months ago and put on 15mg Prednisolone which has now been cut back in stages to 10mg a day. I haven't experienced any side effects from the steroids apart from a small weight gain. I am just so pleased to be feeling normal again!

  • I agree , to be able to get up this morning with much less pain was wonderful , it had been so long. I go to a club weekly for weight so even if i dont lose and stay the same Ill be happy with that. Thank you for saying hello..

  • Do be sure to tell the club person (I don't know, what do you call them?!) that you are on pred because it does very often make a difference - some people have gone and had unrealistic targets set for them which was very demoralising. One lady was told she was just using it as an excuse!

  • Will mention it on saturday , they dont set targets but go by waist measurements etc and how the person feels.. I have a figure in mind and wont go below it... thanks

  • Welcome Kiltylyn,

    I too had the same problems, even struggled to shave and comb hair due pain. I have been on preds now for over 3 months and I have been feeling great just after one week on pred. I am now alternating between 12.5mg and 10 mg every other day. It's the weight gain , upper belly that I dislike most. I am going to take my time to reduce preds slowly and weane my self off it and always in consultation with my doctor.. Wish you all the best.

    Raptorabz

  • thanks for welcome :) Ive been going to a slimming club for few months so will continue that . I have noticed though by 8 ish at night Im looking to eat early supper , have got plenty fruit in to nibble . Extra weight goes right to spine so must get it down.. Have been doing great and only on day 6 of tabs. The pain as you all know is just awful... That must have been awful trying to shave and not knowing why this was happening.. Its great we have each other on here .. Wish you all the best too and will be good to hear of your progress.

  • Veggies and protein are better snacks - lots of carbohydrate in fruit and carbs plus pred equals fat on your midriff, face and the buffalo hump. Keep your carbs low (and it does work).

  • thanks for that....

  • Thanks Kiltylyn, I have been eating loads of fruits, and on weight watchers meals and walking and cycling a lot. I gained over 20 lbs in weight and it is all showing at upper tummy and shoulders. We are in the best place to learn from all the others and ourselves too..

    Take care,

    Raptorabz

  • You take care too .. We sure are in the right group to share our experiences...

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