i have been diagnosed with GCA since Nov 2012, started on 60mgs
now on the slow reduction 5mgs down to 4 slowly (as Eileen's recommended slow reduction) which is working fine. But I hate taking Andronic Acid,
I take 1000 Calcium/vit D tablets a day, I have daily yoghurt (not low fat)
milk, Do Pilates Walk a lot, I have lower back pain, but the X/Ray showed wear & Tear, we don't have Rheumys here in Channel Islands, just the Doctor (who is excellent) but she won't give me a bone density scan, because she says I am taking every precaution (incl AA)) so There is nothing else to take whether I have it or not, but safe to be covered (if you know what I mean)
I just so much hate taking it or is it just me?
No, Jersey royal, you are right to question why you have been put on AA without a bone density scan. I can understand if you'd had a scan and it revealed the need for AA. But just to be handed them worries me. I was put on AA. As part of the medication regime when I was diagnosed at age 52, and it was only following the information I read on this site that made me decide to ask if I could come off the drug. I am awaiting a bone density scan later on in the year. If you can afford to have the test done privately, then do for piece of mind, if not, see if another Dr at the surgery will be more accommodating, after all it would be best practice. Good luck, christina
Thankyou Christina, I do feel I shouldn't be on AA without a bone density scan I will persevere with Dr or look into private screening.
JerseyRoyal
I suspect there may not be a dexa scanner on the islands. Personally I think your GP is totally out of order as there may be no good reason for you to be taking the AA - you only need it if there is bone density loss and plenty of us have gone through pred for years without AA and not developed osteoporosis. I have no onjection to it being used when there is need - but prophylactically is a whole different kettle of fish.
I don't know if it would be an option but google private dexa scan southhampton which should bring up their site - and they do them privately for £55.
Don't waste time or money on the heel scans that claim to diagnose osteoporosis - they are useless.
Very interesting! My GP has started me on AA + calcium supplementation + 15mg Pred, since 7 January this year - no bone density scan, no Rheumy, just took my BP!
I know they do have a dexa scan here, as I had one about 20 years ago, when it had just arrived and they were testing patients, nothing wrong with bones then.
It seems that Doctors just dish out the AA tablet regardless of whether
PMR or GCA Patients need it or not,.
I am away now to the Canary Islands for a month (when we retired we promised ourselves we would go somewhere in the sunshine) my husband has agina, and the cold doesn't help him, anyway you can't drink the water there only mineral water, and on the notes of AA you should only take the tablet with tap water? so I will have to give it up for a month and persevere with the dexa when I get back, or check out Southampton, although the air fare is quite expensive but a very good alternative.
The vitamin D sunshine will do my bones good anyway, (sensibly).
Thankyou, interesting comments.
Hmmm - my husband's department had an early dexa scanner but it was on its last legs not long before he retired over 5 years ago. He had an doffer of funding from a charity to replace it and already had staff to run it (the usual problem for not having the service). The management refused to approve the purchase order. He was furious - but there was no way round it. I have no idea what finally happened - apres moi le deluge!
It occurs to me - I wonder if there is a nearer scanner in France? I wonder how one finds out...
I think I would swap AA for the Canary Islands in February! Have a lovely time!
Hi 🙋 jr l have been on pred for 3.5years as l have pmr and gca l have had 2 dexa or bone density scans in the last 12months l take alandronic acid tab lxweekly l also take adcal 2x daily l have been tried on methatrexate azathioprine and both put me in hospital l am 2weeks into mycophenalate and on 12mg pred daily l have a neurological consultant 2nd to none thank god but been messed about big style by rheuma stand ins and locums who move on for the big cash but hopefully being referred to a permanent one soon meantime good luck 😊