PMRGCAuk
7,239 members11,789 posts

Coming out of the shadows.....LOL

I am new here and since learning that I have PMR (Sep 2017) have been checking in daily to the posts on this blog and found many of the articles/topics/replies invaluable to my understanding of what I have and what to expect going forward. Thank you for that - one and all.

I am 60 years old, British, have PMR and live in Belgium near Antwerp and was wondering if there are any other fellow Brits in the same position?

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I'm mid-60s, British, have PMR and live in northern Italy - if that is what you mean ;-)

I like the medical system here - so have every intention of remaining!

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Same here regards medical care....was more looking for local allies to maybe start a local group......northern Italy....mmmmm...as delightful as it sounds a bit outside the bounds of "local"......

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I don't remember people in Belgium. There is a lady in the Netherlands, one or two in Spain. On another forum I know someone in Germany and in France.

That is the role of the online forums - to provide the same sort of support for people who are isolated from the groups. Actually, there are large areas of the UK with no groups!

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Thanks.....worth a try....

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Don't leave us though!

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Certainly not.....

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I

I'm also 60 and developed PRM this autumn, live in Norfolk and find this forum invaluable, specially as our doctors seem to know so little about the condition.

I began on15 mg on 21 November and have tapered to 9 mg now and have mostly felt well, except couldn't cope with Christmas. I got PMR after moving out of London and stressful work there with unwell husband, who then got worse once we moved to the country. I've stopped work and am much enjoying being at home and painting in my new studio in the garden. For me the condition has had a silver lining - I was lucky in that I was able to stop work and live very simply in a beautiful part of the country.

I think I am doing well, maybe also because I have no other health problems and always did quite a bit of exercise and eat healthily.

I'd love to hear more about how you are doing.

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Hi Cela, I am lucky, as such, that my Rheumatologist is knowledgeable in PMR and I have known him for many years as he treats my mother in law for RA. Bedside manner of a troglodyte and takes blood like he was "pulling a pint" but I like his candidness and above all take comfort from his knowledge and experience.

Started out on 16mg for 3 weeks then down to 12 for 4, 8 for 4 and now 6mg for 6 wks and due another visit on Feb 21st....so do not know where we will go to next? Each reduction has taken time to adjust to...the last approx 10 days and the longest.

Learnt from this site/blog that I am getting down to the level that many struggle with as our own system has to kick in and support.....not without a few concerns to be honest but it will be what it will be.....watch this space...LOL

Just back from a short trip last weekend to Glasgow for a rugby match where I was more than a little concerned that the cold (and I mean very cold...) would affect my joints and muscles.....to the contrary I felt really good.......thank goodness for the single malts!!!

That's about it as to how I am doing.....every day taken as it comes.....hope your husband is on the mend and that your PMR road journey is not too bumpy....

Best Keith

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You have been lucky to be able to cope with that speed of reduction and the size of those steps. The pred didn't get rid of the PMR, it is just managing the inflammation - you are looking for the lowest dose that gives you the same result as the starting dose did and the lower you go, the nearer you get to that. The biggest risk is of overshooting that dose and believe me, if you let a flare of symptoms in it can be quite difficult to get under control again so avoiding that is a very good idea.

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Dear Keith

That is good that you are doing so well and tapering much faster than many others on this site. It is very encouraging. Are you working OK? or do you have less energy? I changed the way I eat and now have virtually no caffeine, very little alcohol, no sugar and very little carbs. I live on salads, soups and fruit - it really seems to suit me and I feel very well - so feel this condition has given me something else positive. On the negative side I'm not managing to log into the gov website to do my income tax so no doubt will end up having to pay £100 fine. Some people call this PMR "fog" affecting my mind, which might well be something to look out for.

good luck with reducing

Celia

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