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

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  • Posted

    I to have a great GP and Rhuemy who understand that I know my body and how to adjust my own dose. I referred my Rhuemy to this site and I'm not certain that he has looked at it but has been very interested in the very slow reduction plan. I've been on pred for 20 months and despite a couple of hick-ups (one nasty flare that was self induced) I'm down to 4mg. Having surgery today so hopefully that won't cause any problems.

    Keep up the good work and hopfully the PMR will burn out sooner than later.

  • Posted

    Hi all

    In my opinion, anyone who hasn't discovered Lidl yet obviously has money to burn.

    • Posted

      I know blodwyn, this could get me more hits than PMR. I promise everyone that as soon as I am better I will do a big shop at Lidl and Aldi and spend my entire pension on goodies (and a bottle of wine for the wife as I do not drink). xx to you all.
  • Posted

    I was diagnosed with PMR Nov 2013. I started with 15mgs and I now reduce every 2 months. I am now on 5mgs but I get these horrible tension headaches that start over my left temple and go round to the back of my head. I cannot sleep on my left side anymore.

    I do believe that you have to reduce slowly. Does anyone else have these symptons?

     

    • Posted

      tricia, at what dose of Pred did the head pain develop and have you checked it out with your GP to rule out the possibility of it being GCA (Giant Cell or Termporal Arteritis).   If GCA is suspected then you will need a much higher dose of Pred to control it and protect your eyesight.  If at any time you experience any visual distrubances (blurriness or pain in your eyes) then do get it checked out immediately, at A&E if the surgery is closed.
  • Posted

    Can only endorse what all have said.Many doctors are not really on the ball with this condition,are they?  The first doctor at my Practice told me I was taking too much Ramipril!!! Don't know where that came from LOL Anyway, I soon had a really good young doc who spotted it immediately.

    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.

    • Posted

      No you are right, he deserves all the respect I can offer as it could'nt have been easy for him as head of the practice. My intention now is to hopefully settle on 15mg a day for 4 to 6 weeks before dropping down slowly by 1 at a time. All the best, Dave
  • Posted

    My point was Mrs O that my first doc failed to diagnose PMR at all. Out of curiousity,why did your doc ban your Ramipril?

    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.

     

    • Posted

      No - I imagine the Germans in Panama are more Harrods-standard wink

      Don't imagine wine is the drink du jour either is it?

    • Posted

      uUed to drink some Mwelot.Wine is cheap and plentiful as you can imagine.But Bacardi and Diet Coke suits me in moderation.Not many Germans in PMA Eileen.Mostly Americans in those bloody gated communities.They never mix with the locals.For me being part of the community is half the fun.I should imagine you are almost Italianised by now.
    • Posted

      Because she thought my head/jaw pain, nausea etc was an allergic reaction to the Ramipril  recently prescribed.  Nearly 4 GPs and as many weeks later, GCA was diagnosed!

      By the way everyone, what is Lidl?!!!!!!lol

    • Posted

      Lidl is a very cheap - price wise - german supermarket.  Along with Aldi - another german supermarket - they are winning hands down in the supermarket battle that has gripped Britian.
    • Posted

      Sorry Oregonjohn, that was meant to be a tongue-in-cheek question but, nonetheless, thank you for a very good description!winksmile  

       

    • Posted

      Oregonjohn: Are you in Oregon, or in the U.K.?  I am a Londoner living on the central Oregon coast, which is why I am confused...
    • Posted

      You mentioned Harrods.  When living, and later visiting, London I always drooled through the food hall in Harrods - no-where like it!  Haven't been for years.  Does anyone know if it has changed or not?

      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?

       

    • Posted

      John, are you familiar with Trader Joe here in the US?  I think Aldi owns Trader Joe, and T.J. is a fun store to go to with all the tasty imports from France, Italy and Germany.
    • Posted

      Where on the Oregon coast do you live?  I live in the Portland/Vancouver area, and the recent very cold weather and storms can be tough on anybody's health.
    • Posted

      Ah - they just put their money there!

      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. biggrin

    • Posted

      The language bit I explained above.

      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. 

    • Posted

      Hi 3party - Confusing in both directions. I have lived in the New Forest, Hampshire, UK for a very long time, came originally from Sunnyside near Clackamas then West Linn.  Married an English girl back in 1965 who died in 1985, remarried another English girl in 1987 who died in 1995.  Then in 1996 remarried again - this time 23 years younger!  Have only been back twice to the Portland area.
    • Posted

      Would you ever return to England to live?  Really nosey, I know, but we 

      can't imagine returning.  Have been in Germany 43 years.

    • Posted

      I had a friend who lived in Vancouver - Washington State, always gets confused with Vancouver BC which is well known in the UK.  Weather over here is still quite mild!!
    • Posted

      Reminds me when I was on vacation in Italy in the 60's some of the locals painting on walls and bridges  'Haben Südtirol spreche Deutsch' - does it still happen?
    • Posted

      Hi Oregonjohn, where in the New Forest did you live, we know it very well. Dave (tavidu)
    • Posted

      My daughter lives in Vancouver, B.C. and is married to a Scotsman.  Both teach at the University.
    • Posted

      I could envisage going back if one of us was very ill and the other couldn't cope alone - after all, a nurse and a paramedic between them should be able to provide pretty good back-up! And I imagine the widow(er) would go back. I assume your family is in Germany - ours is Scotland and the northeast. 

      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...

    • Posted

      "Suedtirol ist NICHT Italien" has been on a sign erected at the Austrian border on the Brenner by the "Freedom Party" for some time. The 60s and 70s were very difficult and bombs were thrown by the freedom supporters but they didn't throw them at people - just electric pylons! The Italians were less fussy about bumping people off. It was a very bitter fight. 

      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...

    • Posted

      Public information message coming up: at the bottom of each post is a flag with "Report" next to it. Click on it and a menu box will come up where one of the options is "Duplicate Post". Click on that and then report and the moderator will come along and delete the excess bits.

      They must be working on it again - more "new, improved"...

    • Posted

      Had to laugh at "university, not forces"  -  My husband, also David, objects strongly when people assume he had been attached to the forces. He was also in further education.

      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!!!   

    • Posted

      Hi Dave,  Just to the North on the A36 of what was the largest village in the UK up to the early 70's - Totton (pop 30.000).  Very close to Canada and not far from Nomansland - now that will get a few comments about strange place names!! 

      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.

    • Posted

      Er - Scotland... 

      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. 

    • Posted

      That's the Boring that is twinned with Dull in Perth and Kinross (not kidding, it's true!). Google "boring dull Scotland" (which it isn't I hasten to add) and wiki will explain all!
    • Posted

      Wow some of the buildings I saw in the clip on the BBC Scotland website about Boring haven't changed a bit - and that was a long time ago!!  The pan at the start didn't quite take in my abiding memory - that of the towering presence of Mt. Hood, just got a quick shot of the Cascades.  Thanks for the info I was not aware it had paired with Dull Scotland.
    • Posted

      See the things you can learn in a PMR forum ;-)

      i'll go and have a look at Boring then...

    • Posted

      They even admit to having a Boring politician...

      The main street looks like every other US main street I've ever seen!

    • Posted

      Hiya oregonjohn, did reply earlier but gone to the moderator due to adding a website address. We know every area you mentioned well, we have our cars serviced in Totton just by the railway, sometimes walk on Canada Common and Penn Pond and often go for a meal at The Lamb in Nomansland. We live in a small village just up from there called Hale and last year my wife rescued a new born New Forest pony (a Colt) that she photographed being born out on the forest because as male ponies are hardly worth anything he would have gone for meat at a local hunt. It is still a wild pony so roams free all year round unless we need to bring him in for a vets visit etc. If you are still interested in the New Forest my wife started a small website on her/our life living here, not for financial gain purely because she loves it here. The detail are newforest-life.com so it will be interesting to see if this also goes to the moderator. All the best, Dave
    • Posted

      I am familiar with Waldport.  We love the Yachats area where we would rent a vacation home by the ocean in the summer and find agates on Agate Beach.

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