PMRGCAuk
7,060 members11,212 posts

Hello everyone

Thought I better finally introduce myself after lurking about here for past few weeks!!

Delighted to have found this community and can see the wealth of knowledge from reading back.

I'm 50 and was diagnosed with pmr 8 weeks ago by my gp. She started me on 15mg preds and the change overnight was nothing short of miraculous lol! I'm now down to 10mg and doing ok. Have seen rheumatologist also and he will see me again at Christmas to see how tapering is going.

Still trying to get my head around what this pmr is and what it means to me and how I'm dealing with it. I'm absolutely convinced it was triggered by exercise... weights to be specific.

Anyway, I'm rattling on here! Just wanted to say hello and thank you for being here x

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Hi, 567efg, and welcome to the 'family'.

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Hello 567 efg, welcome on this forum where you can ask any pmr question that bothers you and there will be answers as you already have noticed. Did you paint the flowers yourself? Aletta

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Thanks Aletta. No I'm afraid not, my painting skills leave a lot to be desired lol

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Hello and welcome to this very clever friendly site. You're doing pretty well by the sounds of it. Interesting about the weights. Do you think you were driving yourself too hard? And if so......why? Therein can lie the answer to this spooky disease. You're in good company here, a lot of quite athletic people have succumbed to PMR.

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Hi Jane, thank you! I guess I wanted to be the fittest 50 year old I could be. That's all. Then this happened. I'm still trying to figure out what this is.

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We all try to figure out how we got in this elite group but there are just too many variables! Many of us are have been extremely active, type A personalities and overachievers in different areas. PMR stops us in our tracks, forces us to put on the brakes and change direction. To me, healing begins with acceptance. I'm still struggling with that after 3 months. I know I will suffer if I do my old life. I am learning I have to pay to play! Sometimes I just pay with pain and fatigue. Being gentle with ourselves has its rewards.

Let us know how you do.

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Hello You do seem to be doing extremely well, down to 10mg in 8 weeks seems very quick. I'm a newbie but going in the opposite direction with Pred. Welcome to this great forum which is very helpful.

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Hi Holly I hope you can start to go back down again soon x

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Thank you I hope so too. Had biopsy for GCA today and dependant on results from biopsy, may be back to my usual 15mg from 60mg. However as I have learnt from the 'aunties' on this forum, it's not a race to get off Pred etc so I'll just try to wait patiently for results even though I'm duly informed they are not always conclusive. Thanks for your good wishes and keep well x

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Welcom.

The pros will be along shortly, in the meantime, have a read at the archives of this forum. The collective wisdom you find here is unmatched, and will serve you well.

PMR is kinda like the game of chess, the more you learn about playing the game, the more you realize you have yet to learn.

Kind regards, PMR 4 years and counting, Jerri

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Where do I find the archives, please?

S.

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Welcome to this friendly site.

On the right hand side of the screen there's a box labelled 'TOPICS'. Click on any of those that you feel might be of interest. However, don't get overwhelmed with information. If you start now by reading each day's posts, you'll soon build up a picture of what's going on for others that may be relevant to you.

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Thanks Rugger! Very friendly site for sure :)

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Hi. Your post was positively uplifting, thank you. I was diagnosed yesterday and I'm scared. I have read one post and it indicates that taking Pred will completely change my life. Guess I'm just getting my head around it.

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Oh poor you. Don't be scared, it's really not so bad :) I read some stuff too at the beginning that freaked me out too. I can only speak for myself but I'm 9 weeks in now and I've no moon face but my wrinkles have filled out a bit 😊 I'm at 10mg a week and a bit, my back is achy in the morning but it's ok. I'm a hairdresser and my arms get heavy if I hold them up for over half hour so for now I've had to stop work. But despite the drop in income I have found other positives like cooking healthy food on a budget and taking time to practice mindfulness (something I always kept putting on the long finger). It's really ok x

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Hi. I have been reading about giant cell arthritis and scared that this might be the next thing to happen. Do you know how common this is?

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Arteritis, inflamed arteries, not arthritis, inflamed joints.

About 1 in 6 patients with PMR symptoms go on to develop GCA symptoms but that is partly because PMR is a symptom of GCA right from the start. The vast majority of us don't go on to develop GCA. There is no point worrying about it - just be aware of the symptoms and take them seriously if they appear.

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Thank you.

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Hi. It can be very frightening when first diagnosed and I agree with others that you can over read and over google. No question seems to be too small to ask on the site. I am new and worried about the type of questions to ask but have had really helpful replies. Don't be scared as you will find a regime to suit you.

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Hi there I remember that feeling ! I was diagnosed in Feb and I haven't had my life changed too much:) I am fatter tired and a slightly more broke:) but that's because I keep buying the latest fad gifts for my PMR! So far a bike, a picnic set! Several bottles of useless multi vitamins! Massages, gym membership and four holidays:) I have been advised not to go down this route by the excellent support network that everyone offers on the site! But hey ho I am still looking for the unicorns horn that will cure me:)

Seriously I had to take a month off work but I have returned full time to a full on job! Everyone will tell you there are ups and downs but with the fabulous support from this site there is light at the end of the tunnel it's just we don't know how long the tunnel is:) x

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Hi and welcome. Yes, this will completely change your life but be assured that life can still be good, just different sometimes. I am comparatively new to this illness - diagnosed about 4 months ago - but have learnt so much from the lovely people on this forum. So please don't be afraid, you'll learn to adjust and life will be good again.

Jan

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Hi suedeshayes! Don't be scared...you will soon know more than the doctors do by reading these posts on a regular basis! I was dx almost a year ago. Started on 15... was still a bit sore after a few weeks, so went up to 20 for about a month....don't be discouraged if something like that happens. After 11 months am now down to 6 and have had a relatively easy go of it. I learned (here of course!) that taking your prednisone around 2:30-4:30 in the morning is a good time and once I ditched my 8am and started getting up around 2:30-4:00 am that seemed to suit me better. Now I wake up automatically, eat something light, take my Med's and go back to bed. I have been very lucky to avoid the dreaded flair ... maybe because I tend to stay at one level of Med's for about 6 weeks. My rheumi would like me to taper quicker....but I read so much about flairs and having to start over, that I decided to be very cautious. It has worked so far. My life has hardly changed a bit, except for weight gain, a short stint with carpal tunnel, and pacing myself carefully when it comes to a long day of exertion. Expect to be sore sometimes, expect to be tired sometimes, and just listen to your body.

Don't be scared.....you will find this forum your lifeline. The amazing "Aunties" will be your new family! I found them before I was even diagnosed...I don't know what I would have done without them ❤️

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Hi, thank you. You are so positive. Just wondering if taking pred at early morning time helped to let u get to sleep at night! Why did it work better? Sue

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Not sure if it's helped get to sleep (some nights are great..6 hours...most are shorter!). But I find I am not in any pain by the time I get up at 8,9, or 10...or if I am it goes away in just a few minutes after I am up. I almost always take a short nap, or just fall asleep while watching the news for about 20 minutes late afternoon. It might not be the right time for everyone, but worth trying if you are not happy with morning Meds. You'll find there are so many options in designing your personal situation! You can do it!

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If you mean taking pred earlier - because each morning a new batch of pro-inflammatory substances is shed in the body at about 4.30am. The sooner after that you take your pred, the less work they have done and there is less inflammation to combat. A German study found that if you take your pred about 2am (plain white pred that is) then the morning stiffness is minimised because the peak level of pred in the tissues is about 4am, ready and waiting to pounce on the inflammation and it never gets hold. A special form of pred was developed that you take at night and it releases at 2am - not available on the NHS. I also know people who wake at 2am, take their pred and go back to sleep. But waking early, taking pred and settling down for another 2 or 3 hours also works for most people.

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I'm so glad I've found this community. The comments are so informative, although sometimes scary. Thank you for all the sharing.

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Yes, fear subsides with the kindness of people on the forum, particularly the Aunties and the humor of MB.

We are all one big happy family regardless of Pred, aches, pains and various other complaints! Welcome!

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Hi, and welcome,

As one of the aforesaid Aunties you might find these links useful for starters!

The 3rd one won't make much sense until you've been on Pred a while -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

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And as another aforesaid auntie - thank you DL for posting the links!

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Thanks so much for posting the links! Really helpful. What a great bunch you are, I'm so grateful to have found you 🙏

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Hello 567efg, welcome to the forum.

You seem to be reducing the pred very well, assuming your symptoms aren't returning. I was lucky enough to find my way to this website early on in my pmr journey, and have found so much useful info, not only in helping me to understand the condition and how to behave towards it, but also the key questions to ask about treatment. One thing I've been very grateful for is the advice about tapering the pred dose - following my gp's instructions in the early months lead to a flare when I dropped too quickly and had to go right back to my starting dose - too depressing! Since then I've been ultra cautious in reducing, and this hasn't always gone down well with my gp, but thanks to the support gained from this forum I've felt able to stick to my guns.

Hope your journey continues as smoothly as possible.

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Hi Patience, good name! Thanks for taking the time to reply. I hope I'm not reducing too quickly either. Started on 15mg for 4 weeks, then 12.5 for 5 weeks(had seen rheumatologist and he kept me on for another week) now 10mg for week and bit and back achy in morning but it's not too bad so I'm happy enough. Then it's a drop of 1mg per month. But I read on somewhere earlier that it's a bit like a game of chess! Trial and error too. How are you now Patience?

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Thanks, name chosen specially as it's a quality I tend to lack!

My drops initially were 15mg for 2 weeks, then 12.5 for 2 weeks, then 10mg - all apparently in line with rheumatology guidelines -and that's where it went wrong for me. I clearly wasn't ready to come down so low so fast. So, now I'm much happier doing things my way as much as possible - which means dropping 0.5mg over a 5 week cycle. I know it's ponderous and I do sometimes feel frustrated that I'm not going faster, but as is stressed by our more experienced sufferers, it's not a race.

I've now (just) achieved the 10mg my gp wanted me to be on some 9 months ago, and I'm certain it's because my slow speed has avoided flare-ups. I just feel it's so important to be going in the right direction - it has a big psychological impact for me.

Keep positive - it will get better!

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Fair play to you for listening to your own body and what's right for you. It's different for everyone but slowly does it seems to be really important.

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The rule of thumb is that drops shouldn't be more than 10% of the previous dose, so you're at that stage where the drop from 12.5 to 10mg was 20%, so that may be why you're achy. 1mg drop from 10 to 9mg is the 10%, but after that, quite a lot of folk drop by only 0.5mg each time. That's what my rheumy wants me to do and I've read it many times on here.

Confession time: I dropped by 1mg / month from 9 to 4mg and had a flare! I've had to go back to 10mg, but this time, it will be slowly, slowly down from now!

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Excellent! Cheers - from New Zealand.

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Welcome to the site. You will get a lot of good advice and support from fellow sufferers. I only joined the group about a month ago and was diagnosed just over 3 months.

PMR seems to have many triggers. Mine was thought to be a bereavement & viral respiratory infection at the same time. However like you I did do a lot of exercise and pushed myself running on the treadmill. Looking back, the painful leg cramps I experienced might have been the start of it. I presumed it was just lactic acid from the exercise. I am 61 years old and have always tried to keep fit. Currently down to 9 mg and due to reduce to 8 next week. So far trying to keep up some exercise but not running.

I am gradually getting my head around it with the support given on the site. You will too.

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Thanks. How do you get to sleep with the steroids? I was up and down loads last night and eventually had a cup of tea at 3 am,.

Sue

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Start a new thread - this won't be seen by everybody and people have loads to say on the topic...

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Hello and welcome I am sure that you will really benefit from the support and straight talking advice that everyone offers! I have found the support invaluable! And the lack of judgement brilliant I have never had we told you so! Although more experienced members have told me so and I have often got it wrong:) x

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