Diagnosed at last!

Bones, joints and muscles
1

Saw my lovely Consultant yesterday and she confirmed PMR. Don't think there was ever much doubt because although my bloods aren't text book PMR my symptoms are. So a question for all you veterans out there (and this isn't a reference to age, in fact I've been suprised that some of you are so young!). When do the Prednisolone side effects start? At the moment I'm losing weight and just wondering at what point I will have to delve to the back of my wardrobe for my selection of bigger sizes :cry: Isn't this PMR really unpredictable? I had 5 days when I felt absolutely rotten, then 2 glorious days (which incidently coincided with my visit to the Consultant so she probably thinks I'm a malingerer) and today? Forget it!

Lizzie Ellen

2

hi Lizzie Ellen

I was one of the unlucky ones with the steriods, my consultant said he had never met anyone so sensitive to steriods, mind you I started on 60mg and I seemed to balloon overnight. Now I am down to 8mg the weight is starting to come off. Weight gain is one of the side effects as is alot of other things but I am thankful I still have my sight.

I am also losing my hair so now I just laugh and say at least I can see how fat and bald I am. Ha! Ha!

Sorry your having a bad day but as Mrs O and Mrs K say on this site go with the flow and listen to your body.

best wishes

pekabar

3

Hi glad you have now been diagnosed When I had PMR the first time I also wasnt texbook with the blood tests and throughout it was my CRP which was higher and not my ESR I had to have my steroids authorised by a Rheumatologist because of this even though my Doctor was convinced I had PMR This time both my CRP and ESR have been elevated I was put on 20mg to start and I found at this level I didnt put on weight because I think I had so much energy and was a bit hyper What I have found is as I have reduced ( I am now trying 4mg for I think the 4th attempt !!!!) I have gained some weight as I have had to rest a lot more as I did keep getting odd muscle strains through exercise I am still trying to keep mobile but have gained about 10 lbs I want to shift I was fed up with the inactivity and unhealthy things were creeping into the diet but this last week I feel better and so am trying to be stricter with myself as fingers crossed I am going to be OK on 4mg until I have to try the next reduction !!!! I think most people do tend to put on weight but it does depend on the doseage and the indidvidual of course Good Luck !!

4

Mrs G, Lizzie Ellen and Pekabar.

Can I suggest you visit www.pmr-gca-northeastuk.org.uk and read up on pmr. Particularly the Guidelines issued by the BSR June this year.

The side effects, moon face, peach fuzz and weight gain to name but a few, do not affect everybody. Some people put weight on, others don't. Everyone is different.

In relation to steroids, please remember they are not a cure, they alleviate the symptoms, there is no known cause or cure, pmr has a mind of its own. It comes and goes when it wants to.

Good luck and keep on asking and chatting as support is so essential.

5

Hi,

Thanks to everyone for the very helpful advice. What an enigma this PMR is. So unpredictable. This week I've had more what I would term 'good days' than 'bad' so am going to go ahead with a planned visit to Spain on Tuesday (providing I can get out of bed on Tuesday morning of course!!). My flight is 4.30pm which I find is my 'wow, I suddenly feel better' time so hope it works this time. I wonder if the sun will help :D My ESR hasn't been up at all which is why diagnosis has been a bit long winded. My CRP is 35 - don't know if that's high, low or indifferent as I'm quite new to this. Anyway, thanks for the advice and we'll see how Spain goes. My wretched Travel Insurance Company have refused to insure me against PMR however I'm not worried about being in Spain without cover (lived there for 10 years so know the score). Hope everyone who's been away had a great time.

Lizzie Ellen

6

Hi Lizzie Ellen,

You are so right when you call this PMR an unpredictable enigma.

Glad to hear that you have a diagnosis, but I think you knew all along what it would be.

As Mrs K says, not everyone will have the same side effects, but my experience of Prednisolone was that in the first couple of months there was no real weight gain, then wham, a couple of extra stone appeared.

You sound as though you are like me, a hoarder of clothes. I'm glad though, as even my 'fat' clothes are proving difficult to fit into nowadays.

My initial blood results in April, did not show much, my CRP was 18 and ESR 30, but as I could hardly move my GP decided to put me on the steroids. Classic, within a couple of days I was actually able to walk up stairs again. Not as I would have done before this struck, but a lot more easily.

I am now down to 7mg per day, as of last Tuesday, so at the moment I am coping with 'the drop'. Don't think the lovely weather we are having at the moment is helping either !

Don't forget though that the steroids are there to help you, only today my husband and I were discussing how awful life would be if there were no such things to help us cope with this condition, I think I may well have shot myself by now.

But as it is, we have, despite the weight gain, moon face etc, we are able to carry on, even if we have a good old moan now and then !!

At least the pain I experience most days is just about bearable.

Hope you have a lovely break in Spain, let us know if the warmer weather (fingers crossed) does you any good.

Best wishes to all,

DD

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Thanks DD - and yes, I hoard :lol: Sounds as though I'm going to need the results of this hoarding. I was going to the gym 3 times a week, walking around 2 miles a day and swimming at least once a week when PMR hit, so really missing the excercise just now. Hope to get back to the gym when I get the OK from the Consultant after a recent knee op. I'm having a run of quite good days at the moment - I'm starting to listen to my body (as suggested by most people on this site) and when I'm tired I give in to it, lay on the settee and fall asleep. It seems to be working. I'm hoping the warm weather in Spain will help, temperatures are good at the moment. I'm trying to be constructive and think about what I can do and not what I can't. Easy when you're having a few goods days :!: Take care

Lizzie Ellen

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Hi again Lizzie Ellen,

Yes, this does seem to strike people that have previously been very active, which seems to make it all the more cruel.

I was an enthusiastic swimmer, at least a mile a week, and my husband and I would spend our weekends walking miles, usually up a mountain !

That all seems a lifetime ago now.

Like you , I learnt to ' go with the flow' , even if it means nodding off in the daytime to make up for the sleepless nights.

I am going to Hydrotherapy twice a week at our local hospital pool, arranged through my rheumatologist and the physiotherapist, so that sort of makes up for missing actually swimming.

Glad to hear that you are having some good days, and that you are being optimistic. I know that's easier said than done some days !

Once again, enjoy your time away,

Regards, DD

9

Hi yes I would agree it does seem to attack active people I was 54 when I had it for the first time I was riding my horse reguarly and looking after the 4 I had then . I was going to the Gym and aerobics 4 times a week and was generally very active The first indication I had a problem was when I had to start useing a mounting block to get on my horse andthen kept getting lots of muscle strains around hips and shoulders I just thought I was getting old !!! until everything escalated I was 60 when I got it for the 2nd time and do still keep fairly active I go to Aerobics look after my now 2 horses but have had to stop doing the work I did for Riding for the Disabled for now as all the runnung leading a horse was too much I now rest more Im sure your trip to the sun will do you good We have been to different parts of Spain 4 times this year and will be back there for Xmas and New Year We have just chosen places where I know the walking is good and not to many steps We were in Venice last year just before I was diagnosed for the 2nd bout and it was an awful lot of walking !!! Have a great time

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Thanks Mrs G. What a shame you had to give up the Riding for the Disabled but pleased to hear that you can still manage the 2 horses you have now. That's pretty good at our age, with or without PMR Just started packing a bag for Spain and half my allowance is being taken up with meds, how did that suddenly happen I ask myself. This time last year I would ponder over what colour nail varnish to take - but by the time I've found room for the blood pressure tablets, statins, prednisolone, Adcal-D (at least they taste nice) bisphosphonates, pain killers, idigestion tablets and wrist and knee supports any thought of nail varnish has gone out of the window. Anyway, come to think of it, I can't reach my toe nails to varnish them most mornings anyway, so I'll just pop in the senokot tabs in its place! Stop moaning Lizzie! I know I'm very lucky, most people on this site seem to be far worse off than me and I'm off to sunny Spain in the morning. Just as an aside Mrs G. Where in Spain have you been? I lived there for 10 years so love to hear about 'all things Spanish'.

Take care everyone.

Lizzie Ellen

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Yes I know what you mean about the luggage and the tablets !! my main worry used to be not to forget my contact lenses now it is the steroids which take priority !! Yes we love Spain A friend has a place in Benalmadena on the Costa Del Sol so been there twice this year Also Palma City ( apartment with a rooftop Hot Tub for medicinal purposes !!) and LEscala on the Costa Brava which has changed little in 30 years I do feel better when I am there and am not looking forward to this winter except my Xmas holiday in Spain I have a strain in my calf muscle today an ache in the rib and my knee feels a bit twisted !!!! Great but it could be worse Where would we all be without steroids !!! Blood tests Thursday so fingers crossed for some good results as I feel I havent got very far in the last 6mths Have a great time and enjoy the sun

12

Good luck for Thursday Mrs G. We're going to our own place in Spain where I have a computer and internet access (albeit a bit Mañaña on the speed front) so will be able to keep a look out for posts to see how everyone is getting on. I love the sound of the 'medicinal' hot tub! Not feeling so good today so will have to leave the housework until I get back (in the hope that Kim and Aggie might pop in while I'm away). I sometimes wonder if its all in the mind - 4 good days when I don't need them, than a bad day when its particularly inconvenient. That's life I suppose. It'll be interesting to see if being in the warm and dry helps with the PMR as this is the first time I've been to the house since it started. Perhaps we should all have the winter in the sun on prescription :D

Take care,

Lizzie Ellen