intro

[Sue8]

Hi all, I was diagnosed on 23rd Oct 2012 after being treated by my GP for PMR for 4 months. I still think I also have PMR as some pains don't fit with RA. Rheumy does not think I have PMR and diagnosed RA.

It has took me a while to get my head around it to be honest.

I have been put on Methotrexate starting at 10mg, next week increasing to 15mg then 2 weeks later to 20mg. I am also on pred dropping to 14mg today. I was given a steroid injection 2 weeks ago to help with the pred tab reduction. It will be my 2nd dose of MTX today had no probs last week with it so hoping for the same this week lol.

I also have diabetes which is a bit all over the place cos of the pred so not a good combination.

Anyway just thought I would introduce myself, I am Sue and 49yrs old been wed to Ian for almost 31yrs and we have 8 children, 5 grandchildren and 2 german shepherds. So that's me.

Keep smiling cos you will only cry if you don't

[earthwitch]

I had a GP who thought I had PMR too and wanted to put me on two years of steroids for it. Thank goodness I read up about it, realised I was in totally the wrong age group, didn't have the massively high ESR needed for the diagnosis, and refused to accept it. At your age PMR would be highly unusual - generally only seen in much older people. You should also have very high ESRs with it and if you don't, then its not PMR. One thing I read in diagnostic criteria and workup for it was that if you are under 55 and then is any suspicion then you should be referred for a full rheumatology workup. If things don't fit with RA don't worry - thats the job of the rheumatologist to sort out. There is another form of inflammatory arthritis that doesn't get easily diagnosed (blood tests don't help identify it) and that is spondyloarthritis, which comes in several different forms. It is also possible to have fibromyalgia on top of inflammatory arthritis, though often what seems like "fibro" pain disappears when the underlying inflammatory arthritis is well controlled.

I do think your GP was rather irresponsible to put you straight onto PMR type doses of steroids without sending you to a rheumatologist first - you might want to make some kind of formal "complaint" letter through PALS (more like a patient feedback letter than a complaint) saying hat you were unhappy about that (even if you don't want them to do anything more yourself about it) because its the only way that GPs are going to learn that they need to refer EVERYONE with a suspicion of a rheumatology disorder for full assessment. I don't think folk complain enough in the UK and really its the only way things change for the better.

[Sue8]

Sorry , I won't be complaining as my doc is great and listens. Personally the age thing with PMR is rubbish and I know of a lot of women younger than me with it. Fibro has never been mentioned only by me a couple of years ago and I was told by a different doc to go home and read up on CFS. I could easily fit the bill for several illnesses. I have had high CRP readings for a few years and the high dose of steroids reduced it, it is only on reducing the steroids that I flare. I saw the rheumy for the first time on 23rd Oct cos of my painful hands and feet hence the diagnosis of RA. I still think I have both RA and PMR but will be reducing the pred unless I flare badly again.

[shirlthegirl]

Hi Sue I would just like to say welcome to this wonderfull site, I have been newly diagnosed by my Doctor at the being of september and have my first appointment to see a rehmy on the14th of this month,(can't wait) I have had a lot of great support and have heard some really possitive storys since i have found this site,

I hope you find a lot of comfort in this site, knowing there is alway someone there to talk to,

Take care Xx

[Sue8 in reply to shirlthegirl]

thank you x

[earthwitch]

I'm sorry, but I'm going to challenge the statement about PMR being either common or an appropriate diagnosis in younger people.

Diagnostic criteria for PMR cks.nhs.uk/polymyalgia_rheu...

If anyone younger than 65 has been diagnosed with it, then it should only be by a rheumatologist and only if all other criteria are met completely. The difficulty is that the symptoms can overlap considerably with spondyloarthritis which is extremely badly underdiagnosed in the UK particularly - if you actually do have spondy and get treated for PMR then you are not being treated appropriately and the high steroid use can cause enormous amounts of other problems. Treatment for PMR is two years of steroids. No-one should take this amount of steroids without being 100 percent sure that the diagnosis is correct.

The other alternative diagnosis is fibromyalgia, and again, this should be a diagnosis of exclusion when all other possibilities have been ruled out. Unfortunately this isn't the case again in the UK, and too many people are going too long not being treated for what are really treatable disorders. Spondyloarthritis and sero-negative RA are two that are frequently wrongly diagnosed as fibro (or PMR) because people only get a single rheumatology appointment before they get told fibro, when really they should be followed up over a period of time and several appointments before other disorders are ruled out. Also, a GP should never give a firm rheumatology diagnosis - they just don't have the training or experience. Their role is to do initial assessments and refer on - not to initiate treatment.

[Sue8 in reply to earthwitch]

I do fir 3 or more of the criteria and while I did not like the idea of long term steroids it was worth taking them to be pain free-ish. I trust my doc and my rheumy and even with RA will probably still be on a lower dose of pred along with the MTX. So long as they work I am good, I just hope that my doc and rheumy actually know what they are talking about or it's a waste of time me keep going back and forth. For the record my daughter has fibro as does my brother and my son has ankylosing spondilitis so I don't think mine is fibro.

[Tinwoman2]

Welcome Sue. This site is wonderful & all the people here give the greatest support. I like that we can tell both the good and the bad & won't be judged.

Hope that you find all the answers soon.

Christine

[Hidden]

Hi Sue,

I remember you coming here before I think so more welcome back than welcome. I'm not sure that it matters unduly what title of arthritic disease we end up with - what matters is how it is treated - and that it is treated and that we are seen at regular intervals by a consultant. My GP also diagnosed me, in my case with RA, and referred me straight away but out me on the DMARD Sulphasalzine, knowing I'd have several months to wait to see a rheumy. Unfortunately I couldn't take the Sulpha though. The consultant was not sure but after another 5 months I was diagnosed with RA, vindicating my GP's original hunch.

I did read up while I waited and Earthwitch is right to say that PMR is usually found in the over 60s - and I agree that 2 years is a long time to be on steroids for, especially if you are diabetic. However I think having a sympathetic GP whom you like and trust is also pretty important and of course you will know more than many of us about Fibro and AS if both are in your family. MTX has worked brilliantly, especially since i've been taking it by injection.

Take care, Tilda

[linnieh]

Your story sounds just like mine sue. Was so glad to be given prednisolone as the severe pain lessened within five days. Still on 9 mg now with 15 mg MTX. Has been a rollercoaster to say the least. I was 48 when told I had PMR. Now been told by rhuemy in new area I have moved to that I never had it but ESR was sky high and has always followed a pattern , high when trying to reduce steriod, low when steriod put up. I would now love to be off them but will never forget the relief I felt at the time from pain. My dad had PMR also in his seventies. He was on steroids for five years then it went. He should have come off before but it kept flaring. He is 85 now and it didn't come back thank goodness. I wish you all the best sue as it is not easy but coming on this site has helped so much. In a way I wish it was PMR as it more often than not goes ,also I think it has something to do with being the age we are (I am 50) premenopausal also.....who knows. Big gentle hug x linnie x

[Sue8 in reply to linnieh]

Hi Linnie, I have had raised CRP for a few years now and the pred did take it down but then as I reduced it went back up. I think the rheumy looked at my history and overall bloods etc to diagnose RA. Like you I think I preferred the PMR with the view it may go in 2yrs or so. My painful toes were put down to my diabetes but obviously it is not. I am off to the podiatrist in a short while, dunno how I will cope as I absolutely can't stand anyone touching my feet so it will be interesting.

I dunno if I am on the menopause or not, my monthlys have gone a bit wierd but doc says no point in doing the blood test as it would be a true reading cos of all the meds I am on also the pred can change things. I only have one side of me and was told I would go into earlier than normal menopause so time will tell but the sooner the better lol.

Sue x

[linnieh]

Yes its one less thing to worry about and cheaper ...lol x

[Hidden]

Welcome sue x