Reassurance : Looking for some encouragement .I’ve... - PMRGCAuk

PMRGCAuk

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Reassurance

35 Replies

Looking for some encouragement .I’ve had Pmr for 4 1/2 years .it doesn’t seem to want to go away . I’m on 5mgs alternating 4mgs a day ... but have never managed to be pain free .. help feeling fed up

35 Replies
piglette profile image
piglette

There are a few lucky people who are pain free with pred, but there are a whole lot of us who always have some pain. It should be at least 70% improvement though. You are on a pretty low dose now. The average time for anyone to have PMR until it goes into remission is actually 5.9 years.

in reply to piglette

Oh thank you ... I seem to go along ok with out worrying about it and then it starts to get me down especially on these dark jan afternoons in lock down

piglette profile image
piglette in reply to

I think a lot of us are feeling down in these dark January days and many do not have PMR!

Daffodilia profile image
Daffodilia in reply to piglette

I think sometimes people end up on low dose pred (5 mg ish?) long term - pain should be managable but may not go completely?

PMRpro profile image
PMRproAmbassador

How good was your pain at the start? What dose did you start with?

If it is any consolation, while half of people manage to get off pred in just under 6 years, only a third get off pred in the 2 years so many doctors believe in. And half of us need a low dose of pred for even longer. You aren't alone by any means. The aim is to be as well as you can be - and if that needs a bit more pred, so be it.

in reply to PMRpro

My starting dose was 40mgs ... I was referred to rheumatologist but all result came back as normal ( I was on 5mgs then )

Ronswife profile image
Ronswife in reply to

I hope you don't mean they put you at 5mg down from 60mg at the start. Try spacing out just 1mg each of the 4 to 5 throughout the day. It helped my pain to do it this way.

in reply to Ronswife

That’s a good idea thank you

PMRpro profile image
PMRproAmbassador in reply to

And were you pain-free then? Was your diagnosis with a query of GCA? Because 40mg for PMR is very high.

madhouse1 profile image
madhouse1 in reply to PMRpro

I was started on 40mgs for 4 days, then 30mgs for 4 days amd then on 20 mgs which worked so well and was only diagnosed with PMR. (My dad had GCA and now I am certain he suffered with undiagnosed PMR) Anything lower than 15mgs and I struggle hugely 20 is ideal but GP has only allowed 10 for several months now and absolutely no more. I was diagnosed 15 months ago

I’m almost back to square one but ready for a review in Feb armed with lots of info from you lovely folk.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Demand referral to a rheumatologist. Either it isn't PMR or your GP has made a right mess (he obviously doesn't know much about PMR). Has he made you reduce in 5mg steps?

madhouse1 profile image
madhouse1 in reply to PMRpro

She referred me to Rheumatology at my first appointment as she said the wait is 2.5 yrs so at least I’m in the list. She doesn’t know anything about PMR.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Where on earth are you? Nowhere had a referral time of that long - unless Northern Irelend has got even worse.

madhouse1 profile image
madhouse1 in reply to PMRpro

Derby, Derbyshire.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

I think your GP is telling porkies, or at least exaggerating.

madhouse1 profile image
madhouse1 in reply to PMRpro

I’ll query that when I have my review and see if she can speed things up.

tangocharlie profile image
tangocharlie in reply to madhouse1

If you need more you need more, every case of PMR has to be treated individually, that's what the EULAR rheumatology guidelines, and NICE guidelines and every bloomin guideline says, though not many doctors know that or follow any of the guidance. Your GP can't just say 'no more steroids'. Ask to see a rheumatologist, and you need one who actually knows about PMR as not all rheumies do.

madhouse1 profile image
madhouse1 in reply to tangocharlie

She doesn’t know about all the guidlines at all. And like my previous surgery think I need to be off the within a year or very soon after and both places reduced by 5 mgs until said I’m not doing that and they reduced by 2.5 for a couple of months but never allow an increase for a flare. I’mIn the waiting list for rheumatology. X

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Then take them some reading matter - and insist they take notice of it.

rheumatology.org/Portals/0/...

rcpe.ac.uk/sites/default/fi...

There is no excuse for ignorance.

madhouse1 profile image
madhouse1 in reply to PMRpro

I’ve got it all printed off ready to give her either rolled up 🤣🤣 or flat to read depending on her attitude

fmkkm profile image
fmkkm

Hi there,I have GCA and this month was my 5 year anniversary. Finally made it to 3.5 mg and truthfully I have no plans to get to zero. If it happens I’ll be thankful! I know after 5 years I have no ability to predict the outcome of this crazy condition. Take good care of yourself and try not to worry.

Louisa1840 profile image
Louisa1840

Hello 1Plain1Purl - I'm guessing your'e a knitter?! I think that feeling down is part of the course for PMR & especially as you're in UK(?) and in the gloom of January there. I am fortunate enough to live in Tasmania but originally from UK. We're in high summer here and my garden is full of Shasta Daisies and Lilies. I've just come in from my hammock where I've been reading Dawn French's "According to Yes" which is wonderful. I have had PMR for coming up for 4 years - perhaps it's getting towards the end for you, remembering that the median length of time PMR lasts is 5.9 years? Remember the last bit is always the hardest - the horse has seen the stable door? As others have suggested why not up your steroids a bit to see if that helps? I simply want to get below 5 mgs as I have heard that that's a level at which there are few side effects and the docs aren't too worried about it. I'm on 7 mgs heading towards 6 and a half..........What can you do to give yourself a lift, indulge yourself? Treat yourself - you're worth it! God Bless.

Constance13 profile image
Constance13 in reply to Louisa1840

Your post took me to a brilliant, care free, place for a few minutes.💥 Sun, hammock, flowers - it's there for us in just a few months - can't wait.

Lockdown, dull dark wet weather doesn't exactly help us to keep our spirits up.

PMRpro profile image
PMRproAmbassador in reply to Constance13

I can recommend the south side of the Alps if you MUST have winter! On balance more sun than precipitation and the snow makes even night time bright! And I took the decision to leave the balcony lights up - the CofE in the UK backed the idea so I exported it.

Constance13 profile image
Constance13 in reply to PMRpro

Ok - rub it in!😏

Haven't got a balcony but I do use under windowsill lighting - it does brighten a day up.

Rain rain and more rain expected for the next two weeks here. Think I'll buy a holiday home (or would that be shed? in Australia for the winter.😂😂

PMRpro profile image
PMRproAmbassador in reply to Constance13

I asked some friends on another forum if it ever stopped raining in the UK and one from Cumbria said "only when it snows ..."

Constance13 profile image
Constance13 in reply to PMRpro

Believe it or not the sun has just popped out - just to prove I'm a liar.😂

PMRpro profile image
PMRproAmbassador in reply to Constance13

Get the bikini out!!!!

Constance13 profile image
Constance13 in reply to PMRpro

😂😂🤶

Constance13 profile image
Constance13 in reply to PMRpro

Couldn't find my bikini so David took me round the park in the wheelchair for 3/4 of an hour.💥

First time I've been out of the house for 5 days. I can walk for about 15 - 20 minutes but it knackers me for most of the day.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Sort of snowing here now - tiny flakes, falling in slow motion...

madhouse1 profile image
madhouse1 in reply to PMRpro

🤣

Joanbill13 profile image
Joanbill13 in reply to Constance13

We usually go to Melbourne to our son .. So grey in the uk in the winter

jimcarlow75 profile image
jimcarlow75

Hi, second time around for me.First was eight years , I was around

68 then. Nearly 76 now and had second lot for 2 years. After reading posts on here some people have gone around 18 years and still have it.

So this puts things into perspective doesn't it. PMR won't go till the times right, till then aim to be as comfortable as you can be...Jim.

Gallagher1a profile image
Gallagher1a

Hi , I have ad PMR 4 years now also I am now on 2 ,1/2 ,mg a day this is the lowest dose I have been on from the start ,but I found that reducing on the lower doses I have had to go slower , I used the chart available somewhere on this site for a very slow taper and it took me over a month to reduce by 1/2 a ml per day ,I think this for me was the best way to cut down .When I reached 2,1/2 from 3 mg after about 10 days I was again uncomfortable so I had a blood test and all was well with that so I persevered with the dose and a couple of weeks later started to feel better ,hope this was helpful.

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