WHAT NEXT!

Hi ADA,

Don't worry about not having replied - I'd say a holiday was far more important, no wonder you didn't get round to it! Hope it was a good one!

But what a thing to go and do - and, even worse, fancy been told not to drink :roll: :cry: It's have to be chocolate I suppose!

Something a bit like that happened to me shortly before being diagnosed with PMR - I had a TGA (transient global amnesia, lost 5 hours or so completely :roll: , wasn't drunk) and amongst the tests for stroke and all the rest was a liver enzymes. Very slightly elevated - the on duty admitting (not a particularly good reputation, insisted it was a TIA when it absolutely obviously WASN'T) but also wrote me up for an iv dose of vit B's which is used for alcoholics in withdrawal :evil: :roll: :oops: When I realised I was black affronted (as my mother used to say) but my GP nearly fell off his chair laughing, looked at the levl and said \"He said THAT was high. Plll-ee-ase!\". The eejit consultant was, shall we say, of very eastern Mediterranean ethnicity and looked down his nose (having complained I'd squeezed his hand too hard during the exam) and told me to stop drinking. It made no difference - but the steroids did! I was even sent for a liver scan - much to the disgust of the radiographer doing it who assured me my liver was in perfect nick.

Get well soon - just think of all the housework you can't do!!! Be positive!

EileenH

Hi Ada & Eileen'

Idon't write here very often but I have learned alot from reading about all your experiences.

I was very interested in yours re the liver because ayear ago I had a 'heart problem', at the time I had undiagnosed PMR, havng spent most of last year at chiropracters,sleeping rarely from pain and diagnosed with arthritis and rheumatism (all turned out to be PMR )

Just before the heart episode the painwas a lot worse,also jaw pain and Very stiff neckpain going into my skull, causing headaches and funny vision.

My ECG was normal and all they could find was troponin in my blood to show I had had a heart episode. Further tests showed my arteries were so good that a person of any age would be proud of them, the consultants words not mine.

So having read such alot on this site in the last year, I think I was on the verge of developing the other syndrome that can make you blind, and that the enforced bed rest prevented that, the PMR was diagnosed within days of my leaving hospital by a new GP at my practise.

I am sure in my own mind that it was not my heart but anartery acting strangely due to the other syndrome ( can never remember its initials)

Am going to try to convince my GP at my review in JAn. so that I can come off ALL the heart tablets I am having to take at the moment.

Sorry this is so long but I am so convinced that it was a misdiagnosis.

Iwould like to know if others agree

Hello RBLO!

I was interested to read about your experience with the Troponin test. About 8 years ago I also suffered a \"heart episode\" and on admittance the Troponin test proved positive confirming a heart attack. Following 16 days in hospital, and what seemed like millions of pills and heparin injections and finally an angiogram, like you I was told my arteries were clear and was discharged with a piece of paper saying it might have been a blood clot which would have been dispersed by the heparin! I arranged to see the cardiologist privately to find out mainly why the initial Troponin test had said \"positive\" thus putting me through much unnecessary drug treatment. His answer \"we don't know why but the result was obviously a false positive and your records have been marked that perhaps someone with one kidney could through up an erroneous result\"!!!! Think he was really clutching at straws! I told him I felt much worse after leaving hospital than entering it and he then took me off all the drugs....within days I developed an irregular heartbeat! That Troponin test leaves a lot to be desired, I'm sure!

As to you wondering whether your \"heart episode\" could be related to PMR or GCA, that sounds like a million dollar question but, as GCA is in the arteries, anything is possible. I have PMR and GCA and certainly your symptoms do suggest a diagnosis of GCA. What dose of Prednisolone was prescribed when your PMR was diagnosed? If they suspected GCA then it is likely you were put on 40 or 60mgs, whereas for PMR the dose is 15 or 20mgs.

You don't say which heart tablets you are taking but I'm not sure that your GP will agree to take you off them when you see him in January. Perhaps a consultation with a cardiologist would be wiser especially in light of the PMR being diagnosed within days of you leaving hospital.

Meanwhile, I hope you are having a successful textbook journey with PMR!

Very best wishes,

MrsO

Hi Eileen H,

interesting to read in your post about you having been sent for a liver scan. I'm having one next week as my liver function is not up to scratch at the moment. My doctor says it could be a knock on effect from the PMR (if indeed this is what I have, it has to be verified by the rheumatologist next month) My doctor said that the liver is easily affected by other problems going on in the body.

So glad you had a good report from your scan, and fingers crossed I shall get the same.

Best wishes,

Molly.

Hi RBLO and Mrs O,

Well, this didn't take long to find out about!

Although many doctors think that troponin is specific to acute cardiac syndrome (what used to be called a heart attack :roll: ) there are several disease process that can cause it to be raised. One of the illnesses to cause an elevated troponin level is myocarditis which often presents 4-14 days after a viral illness with fatigue breathlessness, myalgias, arthralgias and palpitations are common and the ESR is also high. Does anything sound familiar there? Of course it does - myocarditis is due to inflamed arteries and can be caused by, tara, tara: giant cell arteritis (GCA).

RBLO: your presentation of jaw pain with pain into the head with the headaches and vision problems are absolutely typical of temporal arteritis, one form of GCA and since you'd had PMR for some time you probably had quite a lot of inflamed arteries all over by then.

I'm quite shocked to be honest that the doctors weren't aware of the other causes of raised troponin in both of you given they saw no reason for the heart attack diagnosis. It's fair enough to take a raised troponin as confirmation of a heart attack in someone presenting with cardiac symptoms but once you see that that diagnosis must come into question you can't just say it must have been a \"false positive\" and dismiss it entirely. You need to repeat the test in another machine, look at other enzymes, USE CLINICAL JUDGEMENT - lab results should be only part of the diagnosis. I've said it before, I'll say it again, doctors are too reliant on the lab results, they are losing their clinical skills. No wonder there are so many people in hospital as a result of the drugs their doctors have put them on: one estimate reckons it could be anything up to 30% of patients have a problem, not because of illness but interacting drugs. Sorry - rant over (for now! :lol: )

EileenH

Sorry - forgot:

RBLO - you probably avoided the worse bits of GCA because your GP diagnosed the PMR and put you on steroids, although GCA doesn't inevitably lead to permanent loss of sight but it is very likely in anyone who has a brief loss of vision (called amaurosis fugax) at any time due to the GCA. That can be caused by loads of other things too, however. At the launch of the PMR/GCA DVD in Newcastle in March an ophthalmologist there told me she'd never heard of anyone having symptoms of the temporal arteritis form of GCA and then recovering without treatment - I had a sore scalp for about a week and a bit of jaw discomfort but they disappeared again, long before I got steroids.

mollycoo - if your doc looked at some of the guidelines for PMR he'd see raised liver enzymes are common. Why isn't he confident to try steroids for your query PMR? Are your symptoms not typical enough?

EileenH

Hi EileenH,

yes I am on 15mg pred until I see my rheumatologist in a couple of weeks.

Cheers,

Molly

Eileen and the rest of you, just to let you know that I now have a walking plaster - much better. Love this site especially the information that obviously has been overlooked by my doctor that Eileen has pointed out - some of the guidelines for PMR would show that raised liver enzymes are common. I am going to have a large glass of white wine tonight as a treat.(by the way I'm not that young as I had my children very late - I'm 50 past) Have a good weekend

Hi Eileen

Thank you for yet another very informative response - this time on Troponin! Whereas it would appear possible that RBLO's experience of the Troponin result was linked to the onset of PMR and/or GCA, in my case the heart episode didn't follow any viral infection or illness and was some 4 years before the onset of PMR and a year later GCA.....have I ever mentioned that I was awkward!!! :roll: :lol: Perhaps following that experience though you can understand why I refused admission to the same hospital when ill with undiagnosed PMR!

Thanks again, Eileen.

MrsO

MrsO - all the best people are awkward :lol: !! I have quite a reputation! :oops:

You may not have had PMR/GCA at that time but my real point was that there is far too much reliance on the \"labs\" results by doctors - they take them as gospel, not understanding that a single result should never be relied on in isolation. Having decided medicine wasn't for me I spent several years in hospital labs and, as a scientist, this conviction on the part of many doctors that the results are written in stone drives me up the wall. You've got to look at the big picture - and check things that don't quite fit. It's quite likely people have died as a result - that and the fact that the doc had a preconception of the person that was incorrect.

I suspect too that PMR could well be hanging around sub-clincally for some time before something triggers it enough for it to surface - we may live long enough to find out!! :lol:

EileenH

hi all

Thankyou for all your input, have something to help me with the doc in Jan now. Have been onAlorvastatin,clopidogrel,omeprazole and aspirin for 1 year now. My PMR was also undiagnosed in hospital. GP picked it up 1 week after Icame out having been in10 days. My headaches, jaw and eyeproblems disappeared whilst in bed and I think that was due to enforced bed rest. Still had the muscle pains and stiffness all the time in there. GP put me on 20 mg and boy did that work, Ihad my life back. Nowon5mg and tried to go to 2,5 slowly, but that was a step too far .Have decided to wait another month before slowly reducing again, sigh. Have also learnt not to fight the tiredness, that was a VERY hard lesson lol .

Thanks again , what a great site this is.

Hi RBLO

Going from 5 mg to 2.5 mg in one step is far too fast! It is a reduction of 50 %. If you read My story on http://www.pmr-gca-northeast.org.uk/stories.php?id=12 you can see that it took me one year to get below 5 mg and that I felt very tired. The method I used has been called \"Ragnar´s method\" on this forum and I am proud and glad that I have been able to help many persons to reduce the dosage easier.

I have been off Pred almost two years, so even if it took me 3 ½ years, I am off

All the best from Sweden

Ragnar

Hi Ragnar,

Until I read your post I had not realized that you were a fellow sufferer...|I thought \"Ragnar\" was an innovative rheumatologist :roll:

Anyway, many thanks for sharing your method, as I had a couple of unsuccessful attempts at getting from 15mgs to 14, but have managed to get down that 1mg now by using your alternate days system. 8)

I am off on holidays next week so hopefully won't be too stiff and sore to get off the plane after an 8 hour flight....will just use cocktails to recover :!:

Best wishes, Pauline

Yes \"Ragnar's method\" I'm sure has revolutionised a lot of our lives. I have told other people on different medication about it too e.g. youngest son on diazapan (valium to us oldies). This is very addictive and he needed to come off it slowly so as not to get withdrawal symptoms, and apparently pills either didn't come in small dosages or couldn't be cut in half. Seems to work so thanks Ragnar!

Even the cat has been on pills and we think we'll try them alternate days as he seems a lot better......... :lol:

Keep up the good work everyone, Pam

Hi Ragnar,

Unfortunately my GP hasnt given me any 1mg tablets, so until Jan. am trying 5mg and 2.5 mg on alternate days, or if that is not working 5mg 5mg then 2.5mg and back to beginning of 3 day cycle.

Have spent the day picking up oak leaves , it takes me a day cos I have to keep resting !!! still loads on the trees too sigh lol