PMR confirmed
Posted , 12 users are following.
Hiya all. I was diagnosed with PMR last May but have changed doctors since then. 2 weeks ago my new doctor advised me to drop my dosage of preds down from 21mg to 10mg within 2 weeks so that he could test me for a skin allergy that had erupted a few weeks earlier when I dropped from 22mg to 21mg. He also advised me that in his opinion I did not have PMR as I also had severe pain in my legs originally and as far as he was concerned PMR did not affect legs. After dropping from 21mg to 15mg the first week I must admit that I did not feel that bad, just a few aches, however half way through week 2 and dropping 1mg a day the pain and aching joints slowly kicked in big time. By Sunday I was almost bed ridden until the remaining 10mg I was still on kicked in.
I saw my doctor yesterday expecting an argument but straight away he backed down, appologised and said that he had misread the notes on screen and accepted that PMR can affect the legs etc. He is allowing me to make the decisions as to pain management and my dosage and has suggested that he thinks the rash and itching is Hives as after I saw him last, he checked up and concluded that my rash was identical to the ones on the web that I had suggested. We are now at peace with eachother and working together and I see him in 4 weeks time. In the meantime I have up'd dosage to 15mg a day and hopefully things can settle down. The moral of this is, we are the ones in pain so do not give in to doctors that try and tell you differently and fight your corner. Good Luck
4 likes, 93 replies
Bababoyd tavidu
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jennie34011 tavidu
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Mrs.Mac-Canada tavidu
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Keep up the good work and hopfully the PMR will burn out sooner than later.
tavidu Mrs.Mac-Canada
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Mrs.Mac-Canada tavidu
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blodwyn tavidu
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In my opinion, anyone who hasn't discovered Lidl yet obviously has money to burn.
tavidu blodwyn
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tricia11872 tavidu
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I do believe that you have to reduce slowly. Does anyone else have these symptons?
MrsO-UK_Surrey tricia11872
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panamabob tavidu
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Yes,good on your doc for backing off.I;m sure you respect him more than if he had tried to BS his way out of the situation.Yes,take it very slow.
tavidu panamabob
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MrsO-UK_Surrey panamabob
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panamabob tavidu
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No Lidl orAldi in Panama.Just Super99 ,Extra and El Rey. Not a lot to say really.But will defo give Lidl a try when I get back.
EileenH panamabob
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Don't imagine wine is the drink du jour either is it?
panamabob EileenH
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MrsO-UK_Surrey panamabob
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By the way everyone, what is Lidl?!!!!!!
Oregonjohn-UK MrsO-UK_Surrey
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MrsO-UK_Surrey Oregonjohn-UK
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3party Oregonjohn-UK
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constance.de EileenH
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Hoorah for Lidl and Harrods!!
A personal question, Eileen. You are an English woman, living in Italy, speaking German!! Interesting! You seem to know a lot about the NHS, do you travel to England a lot?
erika59785 Oregonjohn-UK
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erika59785 3party
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EileenH panamabob
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I suppose you can't expect the Americans to live in any other sort of community when abroad - enough of the ones with money live in them at home! They might have to learn another language too - what do you speak in Panama?
Well sort of - this region is an almost fully autonomous German-speaking one, formerly part of the Austro-Hungarian Empire and gifted to Italy in the Versailles agreement by the Allies at the end of WW1. Despite the faschists best efforts in the '20s and those of the post-WW2 government, where l live is 90% German speakers. Further south is more "Italian" but here has all the better bits of Austria combined with the better bits of Italy.
EileenH constance.de
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I've only been here for 5 years, since David took early retirement from the NHS where he was a clinical scientist. I worked in the NHS for quite some time as well. One daughter is a nurse in Scotland and the other a paramedic in the north of England.
Oregonjohn-UK 3party
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constance.de EileenH
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can't imagine returning. Have been in Germany 43 years.
Oregonjohn-UK erika59785
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Oregonjohn-UK EileenH
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tavidu Oregonjohn-UK
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erika59785 Oregonjohn-UK
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EileenH constance.de
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But until that day comes I have no desire to return at all - certainly not at the moment. We lived in Germany for most of the '80s (university, not forces) and it was a major struggle when we went back for David's career because we just didn't recognise the country we were faced with. We returned to the place we'd moved from - which in many ways is even more difficult than moving somewhere new as you don't expect to have to make new friends but you do. Maybe we were unlucky - a village is unlikely to be as welcoming to "foreigners", even when they have a UK name and obviously speak English as natives, as a city perhaps but i'm no city girl! The Polish neighbour (our age with kids our kids age) also assumed that people who had arrived from Germany were German and, therefore, Nazis. Charming person. The girls suffered badly - until there was a question in school about who had been born in Dundee and Nat put her hand up. She was cross-examined and things did improve after that. But it had taken about 3 years of bullying, they were even stoned on the way home! No "incitement to racism" laws then.
No, very happy here - and the local health service is still excellent. Not quite as cheap as the UK but very thorough so you feel as if you have very cheap but private standard health care. I can do being pretty ill in German...
EileenH Oregonjohn-UK
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I have been told very stroppily by cold callers that "when you live in Italy you should speak Italian" when I reply in German. Yesterday I managed the entire explanation in Italian - this is an autonomous region where German is equal in value as an official language. It isn't, of course, since many companies are based in Italy, such as Telecom and the Post and getting anything sorted by them is a nightmare. But it is a nightmare for the locals who DO speak Italian too. Many German speakers speak Italian, especially if they work in shops or the tourist trade - older Italian speakers are less likely to speak German though. What is funny is that at the hospital you hear far more Italian than German from patients! Not sure what that says about them...
EileenH Oregonjohn-UK
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They must be working on it again - more "new, improved"...
constance.de EileenH
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How awful! Your family were treated abominably when you returned to England. We gave it a go in 2000 when David retired, but we couldn't settle.
Everyone treated us fantastically and did their best to "re-integrate" us - asked us to parties, recommended us to their clubs, etc. etc. We lived in Oundle - not a city. However, we decided to return to Germany after two years. We have a daughter in Germany and a son in the Cotswolds.
Husband's comment this morning!! PMR forum getting more like a social club instead of a patients forum!!!
Oregonjohn-UK
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Not too far east of where I grew up in Oregon was a place called Boring, have a photo somewhere with a road sign pointing to Boring, Salem! Salem being the State Capitol.
EileenH constance.de
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The northeast PMRGCAUK forum IS a social club! It is structured differently and we have sections for all sorts of things including photos, chatterbox, jokes and even within a serious discussion we often go "off piste". In the summer when I was over in the UK I attended the Surrey support group meeting and met a load of people I already "knew" - online. We went for lunch together afterwards - it really was as if we'd lived next door to one another for years.
Lots of people comment on how they have a good laugh when they drop in feeling rubbish. And this is an equally important part of a forum - the NE forum is dedicated to PMR and GCA but we don't mind if someone asks about something else. Someone will have something to contribute. This forum is the "parent" of the other two since it was here the ladies who got the charities going met originally but each of the three is distinctively different.
EileenH Oregonjohn-UK
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Oregonjohn-UK EileenH
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EileenH Oregonjohn-UK
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i'll go and have a look at Boring then...
EileenH
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The main street looks like every other US main street I've ever seen!
tavidu Oregonjohn-UK
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3party erika59785
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erika59785 3party
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