Dexa Scan

Rheumatologist was doubting PMR/GCA diagnosis from GP and suspected some other sinister agenda, I think! I was hoping I could argue those results against Alendronic acid. Oh well

If you are on steroids or have any other risk factors for osteoporosis then your GP(in the UK) can order a DEXA scan. In other parts of Europe you can buy one pretty cheaply. Others on this PMR site will argue against taking Alendronic acid unless bone thinning is proven to be happening...let's wait for their response. G

 

Yes, hi whisper, I'm only 53 and had never had a bone density scan and was given AA. After reading all the negative things about it I requested to stop taking it which my rheumatologist agreed too. I will now go by bone density scans to see how my bones are. And, if I ever have to take AA then that's fine, but to be simply prescribed them without any evidence I needed them was not acceptable to me. I took them for 11 months and apparently what they achieve will never leave my body! These drugs actually can only be taken for a period of no more than 5 years because at that point they then have the opposite effect and begin to thin the bones. Whisper, why does your rheumatologist feel you do not have PMR. Did you have all the symtoms and did not the dose(normally 15mgs) clear up those symtoms very quickly and although they are not conclusive was your ESR/CRP levels high indicating inflamation somewhere in the body? Christina

i thought my symptoms were classic for PMR/GCA but able to slowly move arms and legs as instructed on his examination as I do stretching to help with difficult movements! My mistake and lesson learned. i now know to exaggerate the problems at appointments! Reductions in pred brought back raised ESR/CRP so now he reluctantly accepts it. 

For goodness sake! Having PMR doesn't mean we are totally frozen and unable to move - I'd have been confined to bed for a very long time had that been true! It is stiffness and pain that shouldn't be there and which goes away to a great extent with pred. Mind you - I have heard of rheumies who say if you have pain it isn't PMR. Really?

How ridiculous! My rheumatologist asked me to remove all my clothes including my socks, down to my panties and vest. He sat and watched me and offered no help at all when I struggled. All the while he was watching me and making notes. I managed to do all the movements he asked me to do. I then had to lie on a couch and he felt all my joints and neck. Again he did not help me get into and lie down on the couch. He simply watched me and made notes. Then and only then did then help me to dress and helped sit me down. He explained that from what he has seen and from his examination he believed I had PMR. My appointment took about 45 mins. A week later I and my GP received an in depth report which stated that I could do all the things he requested, without help albeit with much difficulty and much pain. He quite clearly was not the monster that I thought he was at the time! I have since visited him twice more and he has always been very sympathetic to the diagnosis. I count myself very lucky. Christina

That sounds very reasonable. Though the long journey would have to be broken up - or I won't be able to get out of the car! Never had Vit D checked, though calcium is OK. i will ask GP. Some reflux is there.

I never found that a long journey was significantly worse than a short one - any more than 10 minutes if I wasn't driving and I couldn't move when I got out! Strangely, if I was driving it was better (well, less worse). Part of that was because the driving seat has a lumbar support, passenger seat doesn't, and I sit in a different position for driving. The result is I drive everywhere when we are using the car - all over Europe. On that basis - I refuse to drive the camper van! Then it's his turn ;-)

By the way everyone: don't ever bother wasting money on the small devices that Boots and places use to offer heel measurement of bone density. They are useless and miss a lot of osteoporosis cases. They are the basis for the marketing of alendronic acid as a a wonder-drug... It's a long story!

Yes, but your GP should order it free on the NHS if you are at risk.

They should. But they don't. There are a lot of things GPs should do in PMR and don't.

And there are a lot of get out clauses which will be quoted - like "you're too old" (i.e. we'll just give you AA which is cheaper and covers our back), "there is a long waiting list". The patient does have to fit eligibility criteria - which DOES (should) include being on pred for more than 3 months. It also varies from Trust to Trust as to whether a GP can refer directly - but even when the GP refers, it is still subjected to a check by a consultant who decides if you fit the criteria.

I see Bristol Southmead also offer private scans for £72. No doubt many places do so to subsidise the cost of their scanner.

Agreed. However there are magic words that trigger a response to get a scan done(e.g. Early menopause, steroid use, family history of osteoporosis etc) For a full list of indications your PMR sufferers can look at the SIGN DEXA guidance. I don't know what the age cutoff is except I think NHS Choices say that there is an age when risk is so high it is not worth doing. Not sure about that one. However, they are clear that 3 months of steroids should be enough to remind your clinician that it is time to have a DEXA locally for free.

i have heard of 6 month waiting times but also known some Italians who have got them done for 25 Euros!

Last 90 minute drive I did on getting out of my truck my legs refused to work and I crumbled onto the pavement! Then hauled myself up the side and tried to compose myself before my appointment. Very embarassing! Need to keep a sense of humour at all times!

I paid 35 euros here in Bozen in South Tirol - but that is because they are done privately under contract to the health care service and we only have to pay our co-pay. Apart from GP and in-patient services we pay a contribution for every consultation and prescription unless exempt for chronic illness or low income. That's in addition to our social insurance contributions. And attendance at A&E costrs 15 euros - very successfully dissuades those who just require a sticking plaster or paracetamol. Emergency ambulances are free, otherwise you may get a bill. I belong to the White Cross who supply the ambulance services and that gives me 6 non-urgent ambo transfers per year and air recoveryback here in case of illness anywhere in the world. Mostly held in case one of us is taken ill on our annual UK trip...