New member just diagnosed with PMR

[kiltylyn]

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..

[Hidden]

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

[kiltylyn in reply to Hidden]

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

[PMRpro Ambassador]

You know there is a Scottish charity too?

PMR-GCA Scotland: pmrandgca.org.uk

[kiltylyn in reply to PMRpro]

thanks have been in touch with them..

[Nannie-C]

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

[kiltylyn in reply to Nannie-C]

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..

[Nannie-C in reply to kiltylyn]

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

[kiltylyn in reply to Nannie-C]

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

[alexamarie in reply to Nannie-C]

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

[PMRpro Ambassador in reply to alexamarie]

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.

[Carathedog in reply to Nannie-C]

Hi Nannie CI wasn’t aware of this, I’m in St Andrews, I’d be very interested in attending a meeting , I’ll make a note of the next one

Many Thanks

[PMRpro Ambassador in reply to Carathedog]

This post is 6 years old - but have you found the Scotish charity website?

pmrgcascotland.com/

The Dundee group resumed meetings last month - the other groups haven't yet restarted but it will be the Dundee group that you will be interested in if you are in St Andrews.

Many happy memories of lunch on the beach when I was at Uni

[Carathedog in reply to PMRpro]

Yes thanks, contacted them, and yes St Andrews is a great place

[piglette]

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.

[kiltylyn in reply to piglette]

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...

[PMRpro Ambassador in reply to kiltylyn]

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.

[kiltylyn in reply to PMRpro]

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...

[PMRpro Ambassador in reply to kiltylyn]

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...

[DMallett]

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!

[kiltylyn in reply to DMallett]

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..

[PMRpro Ambassador in reply to kiltylyn]

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!

[kiltylyn in reply to PMRpro]

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

[Raptorabz]

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

[kiltylyn in reply to 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.

[PMRpro Ambassador in reply to kiltylyn]

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).

[kiltylyn in reply to PMRpro]

thanks for that....

[Raptorabz in reply to kiltylyn]

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

[kiltylyn in reply to Raptorabz]

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

[ali5son]

Hello new to group

Was diagnosed June PMR and very grateful for prednisolone for the instant relief. But now 3 months on side effects really getting me down. Was on 20mg and tappering 10mg this morning.

[PMRpro Ambassador in reply to ali5son]

Please start a new thread because very few people will see your post here unless they have clicked on Follow originally and not everyone does.

Are you saying you are dropping from 20 to 10 just like that?

And if you say what your side effect problems are there will probably be someone who has dealt with it. Most pred side effects can be managed not too badly when you know how - especially the weight gain aspect!!

[ali5son in reply to PMRpro]

No went down to to 15mg when I was staying away from home and messed up my meds so as felt fine just stayed there. Over past month or so have come down by 1mg every 2 weeks on doctors advice. Wonder why they don't start you on lower dose and put you up or down on how the PMR responds. Then maybe would be easier to get off them. Don't know anyone who has PMR and confused. Thanks

[PMRpro Ambassador in reply to ali5son]

Because it really doesn't work particularly well doing it that way round. If it works then reducing 1mg every 2 weeks is not bad - but for many people it is far too fast and you run the risk of missing the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did.

It isn't a case "of easier to get off them" - the pred hasn't cured anything, you are now looking for the lowest dose that manages the symptoms, not heading relentlessly to zero. If you find it difficult to get off pred then it is because the cause of the PMR is still active, producing inflammation and requiring pred to deal with it.

[ali5son in reply to PMRpro]

Thankyou for your advice all new to this. Just finding out from internet where you see lots of different information.

[PMRpro Ambassador in reply to ali5son]

The information you get from the UK forums and the charities behind them tends to be sensible and reliable as well as from people who have it. Are you in the UK? Maybe there is a support group near you so you could meet others to exchange experiences.

This is a link to a post on another forum where we have collected all the recommended resources, most of which are medical papers or articles or approved by medics:

patient.info/forums/discuss...

[ali5son in reply to PMRpro]

Thankyou again telephoned and left a message for information pack.

[ali5son in reply to PMRpro]

Got in touch with someone on the link you gave . They were great and sending out a information pack. And someone on this form who lives near messaged me. Again thankyou