PMRGCAuk
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New diagnosis

Hi all. I’m a newbie only diagnosed PMR and GCA 2 days ago by an emergency blood test and locum doctor as it was xmas eve. He’s put me on 40g of Pred for 5 days until I can see my own doctor. But although I can’t sleep as I feel I could run a marathon my symptoms have all but gone. What have I got to look forward to and any advice on weight gain with these steroids (my biggest fear)

Thanks in advance

Karey

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Hi Karey

I was diagnosed early November but having what I thought was a frozen shoulder last year and lots of aches and pains, tiredness etc this year i have probably that long. Anyway was put on 30mg to start and like you thought I could run a marathon but beware this is just the steroids kicking in. I actually went back to work and did all the things I would usually do as I thought well that must be it now I’m better!! (I’ve now been off work since that week and still getting over this flare up). Also on the rheumatologist advice I came down to 25mg early Dec then 20mg the following week but this was too much too soon as the pains have come back so now over past week or so back up to 30mg again. Don’t be fooled and take it really easy as the steroids have only got rid of the pain. The PMR is still there and you won’t be able to do as much as you used to. The advice on this site is invaluable and the people are much more helpful and knowledgable than my rheumatologist and doctor! Keep reading and take it easy as I have learned and then you should be able to manage it. The secret is rest, rest and more rest.

Hope you have a restful xmas 😀

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Ooh thanks Jenny. Have you had any adverse affects of the steroids?

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Well I have a nice round face now and everyone keeps telling me how well I look!! Wish I felt it but to be honest nothing worse than that for me so far 😀

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You can edit - click on the right hand box with the downward pointing arrow...

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Thanks for that 👍

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Let's start with the simple bit: cut carbs drastically to help avoid weight gain with pred!

Now let's put weight gain into perspective: the ultimate "side effect" of untreated GCA is loss of vision. Even weight gain is a minor problem compared with that or any other side effect.

As you've already been told, the pred is just relieving the symptoms, you are still ill as the underlying cause is still chugging away in the background. You need to rest - if you can't sleep, never mind, rest as much as you can and sleep when/if you feel able.

The fact your symptoms have improved so much does make it sound as if your locum GP is right so I hope your own GP is as good!

And do take note of Jenny's advice - and be patient. There is plenty of time to explain.

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Thanks - I think I’ve felt so unwell for so long I ignored the symptoms that this feels amazing at the moment.

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I think a lot of people find that. One GP even commented in his blog that part of the typical response to pred in PMR was a patient who dragged themselves in LOOKING ill returned with a smile and looking so much better.

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That was me. So ill when I appeared they gave me immediate appointment with a doctor although no one in the practice was accepting patients. After week on pred returned with so much gratitude and feeling life was worth living after all, first thing I said to her was, "Thank you".

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Hi KareyA,

Welcome and have a read through of this, it may help. - healthunlocked.com/pmrgcauk...

I can well remember the getting up at 2,3 or 4 am and having so much energy you bounce off the walls, but it does recede as your body gets acclimatised to all that cortisol racing around your body. Then you may find you slump, so do quite dramatically, but not all!

Please come back with any queries, questions, rants- no matter how trivial they may seem. We’ve all been there, and most importantly understand what you are going through.

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Finding this forum has been great - I will thank you.

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Gosh what a shock for you on Christmas Eve as well. Thank goodness it was spotted and well done for finding this fount of knowledge and support so quickly. We have so much to tell you but you won’t be taking much in yet.

The advice seems to be to cut out carbs to avoid weight gain and people testify to this working. I haven’t had enough self discipline and have definitely changed shape - there is more of me - kind of top heavy. I am a bad example because I gave into sugar cravings etc. So if you are a determined person you could avoid these pitfalls. It is not the drug that makes you gain weight it’s what it encourages you to eat. It won’t be so bad once you are ready to taper down to the lower doses.

Welcome to the site. Bring all your questions, worries and fears. There is always someone to help you. Even on Christmas Day, Karey.

The manic phase doesn’t last. I rather liked it.😳

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Hi There. I’m in Sheffield too. I know I need to fight this rather than worry about weight but I have just spent a year on Slimmimg World and lost 3 stone and as soon as steroids were mentioned I panicked a bit. I’ve felt so rubbish for so long I’d forgotten what it felt like to just get out of a chair without a struggle !

I only went to the doctor because my jaw locked and I didn’t think it was related to the neck and shoulder stiffness I got a good telling off I didn’t even think anyone would see me but once I described all my symptoms it was go go go Fast track blood test on xmas eve which also happened to be a Sunday god bless the NHS

Reading other posts the side affects seem to be minimal. I look forward to getting to know you all better. I’m just going to print off the fact sheets on both PMR and GCA

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We must seriously think about a support group in the Spring. Poopadoop is also in Sheffield I think. I am off to Australia for a month on Thursday. I’ve become a bit of a recluse though. Got tired of dreading outings and wanting to cancel things. I need to step blinking back into the world in the new year. My whole reason for enjoying life in spite of PMR, went to Australia last September, aged 3 and the best therapist known to grandmas. Theo, even his name makes me feel better. I cared for him as soon as his mum went back to work, after Mat leave.

I have had PMR since March 2016 ( like most people, undiagnosed for longer). I am on 7 mgs of Prednisalone and finding this bit surprisingly hard.

I don’t see why the doctor’s told you off. Half of the medical profession are unfamiliar with this set of symptoms.

Well done for losing 3 stone, that is will power. Now your will power is needed for rest and recuperation. Whatever it is Karey, just leave it and put your feet up. You have a serious systemic disease that needs careful management. Recognise fake energy for what it is.

I feel proud of Sheffield for the way it cared for you. Having said that, my wonderful Rheumatologist is in Wharfdale Hospital in Leeds and is worth travelling for. She is a leading light in the PMR/ GCA world. Dr Sarah Mackie. If you have any choice in the Rheumatologist you are referred to. She runs various research projects that you can volunteer for and get gold star attention.

Some Rheumatologist can be less than excited about our conditions - so beware.

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Thanks Jane all this advice is priceless. I’m up for a support group. We’ll get something going in the spring

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Hi Jane and Karey and anyone else in Yorkshire or beyond!

We already have a 'meet-up' group that was established just this year and has met four times so far, in Ilkley. We've decided to meet next time in the Community Hub in the John Lewis store in Leeds city centre, right next to the bus station. This should make it easier for those of you in South Yorkshire to come. We already have people come from North and West Yorkshire.

The date is March 1st and the room is booked from 11.30am to 3pm, so people are welcome to come for any length of time.

Primrose2 put up a post the other day and will post again nearer the time.

Hoping to meet you both and any other new faces.

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Thanks Sue I have PM’d you with my email. I don’t drive though and trains are slow. Who knows I might be a new woman in March, I wish.

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And who knows, if there are a few of you in Sheffield - perhaps you can share a car?

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You definitely have the basis of a small local group in Sheffield which is how any group starts. The NE groups meet separately in Gateshead and Middlesborough and then get together for major meetings every so often.

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So pleased to see you are top heavy as well, thought it was just me , have got used to the fat face and am trying to be good with sugars but oh it's so hard , strange how we all differ !

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I feel.like the fat bits have relocated. My chest and upper back definitely got bigger....coats tighter. But my hips seem smaller.

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Yes Poopadoop, Little wispy legs and hips carrying a huge bosomy top. Bizarre!

I longed for a bust when I was 13. Be careful what you wish for. 🤭

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That's what I have said all my life - really can't understand why anyone wants an augmentation!!!!!

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Had to buy new Undies, still an excuse to shop ! Just feel like I've got floats strapped to my chest !

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Thanks a bunch Rosebud 😂. Think Diana Dors in the later part of her career. Without the panache.

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If you end up on corticosteroids long term - keep an eye on your bone density. I take calcium and vitamin D supplements with mine. I also asked for a dexa scan after 6mths to check all was ok.

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Thank you, osteoporosis runs in my family so I will certainly mention this to my doctor

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Oh yes good point! Karey ask for a DEXA scan for your bone density before you accept Alendronic Acid. It is a very mixed blessing of a drug and given automatically, sometimes to those who really don’t need it. The side effects can be pretty horrible. My DEXA scan showed that it wasn’t needed and my mum had Osteoporosis.

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I got it too, but after the first dose I ached all over, and this plus the PMR was too much. I haven't touched it since!!! However , that said not everyone reacts!

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Hi I had a similar situation 18 months ago I am now down to 13mg per day the wonderful feeling you have will reduce with the reduced dose Re weight I find it a continual battle to keep my weight the same and I only have to look at extra food. And the pounds go on and I am always hungry , I am trying to taper pred down I have dropped from 15 to 13 over 6 weeks

Good luck

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Hi Karen.

i would like to add a little word of warning. You feel wonderful now you are on pred but be VERY careful. I felt like Superwoman and went out and scrubbed all my decking and even the paved area. I gave myself several severed tendons and a reticular cuff tear. My shoulder is now permanently sore and crunchy. My message is take it easy even though you are bounding with energy. I haven’t put weight on in the almost 3 years on pred. Main reason is I eat small healthy portions and very few carbs. I scarcely ever eat sweets or chocolate. I’m sure we will all be following your progress.

Liz.

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Thanks Liz , noted. Just happy to be able to walk and to get out of the bed and out of a chair in one go at the moment. I’m definitely a sharer. How did yours start.?

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Hi Karey,

I had felt off colour for a few weeks and had lost half a stone without trying. I then became inordinately tired sleeping for the best part of two days. My eyes were runny and sore. I woke up the next morning and couldn’t lift the duvet to get out of bed. Extreme pain across my shoulders and down my arms and across my lower back and down to my knees. Eventually got out of bed and shuffled to the loo. I couldn’t flush it as it was excruciating. Went downstairs on my bottom and found I couldn’t lift up the kettle to make a hot drink. By lunch it was a bit better and by evening almost gone. Following morning was again awful. Just sat and sobbed. Couldn’t turn over the pages of my newspaper. My daughter in law came and helped to her car and to the GP. She immediately suspected Polymyalgia and did a blood test. She rang later in the day and confirmed and left a prescription for prednisolone. Worked well but not totally so increased to 20mg. Absolute bliss. After 3 years am down to 3.5mg and reducing half an mg every 6 weeks. All this followed an extreme emotional trauma.

Liz.

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This is almost exactly like me especially with bedding and i keep thinking I was starting with the flu, my pain started in my kneck shoulders and lower back/bottom I’ve had a trauma too, work related. I took early retirement (I’m 56) I’m on 40 mg but not seen my own doctor since the diagnosis I’ll keep messaging on here it’s given me some comfort. Thank you x

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You are in the honeymoon period with the steroids. Enjoy it! It’s the best. It was the best I had felt in years unfortunately it only lasted about 3 weeks for me.

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Hi. Oh no how did yours start?

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