I have had GCA for 18months plus I take all the necessary drugs including ones for the bones had 2 fractured ribs and an embolism 6 months ago all seems ok now having to take warfarin indefinitely had to stop aspirin at the time I assume the warfarin covers this is it a regular feature for this illness to have a bone scan doctor has never mentioned it?
GCA and bone scans: I have had GCA for 18months... - PMRGCAuk
The BSR guidelines suggest a baseline DEXA should be done at the start of long-term treatment with steroids, with a follow-up every two years or so. This has been done for me, but I know others have struggled to get the initial scan done. The main reason now is that the thinking behind the giving of drugs to prevent osteoporosis has changed and they are not necessary unless osteopenia has been diagnosed (the pre-osteoporosis stage) as the maximum you should be on them for is just 5 years. It seems a bit silly to start taking them now if there is no need to do so - if you do that but have fine bone density in the first place it leaves you nowhere to go if you then develop problems when the 5 years is up.
I was lucky and was on warfarin for only six months following a DVT but the aspirin was stopped as it is the least effective of the two as far as thrombosis/embolisms are concerned - warfarin is still the main drug used in these.
Hi I too had multiple embolisms in my left lung and was on warfarin for 8months should have been six but the doc forgot i was on it,back to aspirin now,feeling a lot better,also down to 7mg,s of preds last June was on 30mg and very ill racked with pain but as i reduced the preds the pain reduced as well,very strange,were did you have your embolism?they don't go they just shrink apparently so i am told by the experts,
mind you that means absolutely nothing we are much more informed on this forum.
I too am struggling to get scan done my GP told me 5years as i did have one 2 years ago and osteoporosis was diagnosed,
any one on here to tell me when i should be getting Adrenals tested as Rheumy said I should be down to 5mg before they warrant a test is that correct please,
Goodness me its hard work with the professionals,
good luck to all,kind regard Anne
Answer to Adrenal question. yes down to 5mg as they don't start to slowly wake up till your dose is lower than what you would make normally. I had mine done when on 2mg and had been there for six months or so. They were working.
Bone scan, my GP and Rheumy did Dexa every two years. Bones showed no change.
it was in my right lung doctor had been. Treating me for a chest infection which didn't clear up saw my consultant on a routine visit and he said go back to doctor to get chest cleared up it was then I was sent for a chest x ray something was seen and sent for a scan it was an embolism that was 2 months after start of chest trouble so good job I insisted on being seen again. you know yourself when something is wrong but I think the doctors think you are hallucinating about symptoms feeling sorry for yourself but each time I have felt there is a problem there always has been. up until this illness I never went to the doctors being very lucky with my health and I feel I have to be pro-active regarding it as the doctors don't seem to bother. I will be asking for a bone scan next as maybe I should not be on the bone drugs. Also people on here talk about vitamin d I have never been told anything about it? are the doctors reluctant because of cost?
Warfarin and aspirin works on different things. Aspirin seems to have a beneficial effect in preventing heart attacks and strokes but doesn't do much with preventing the clots that cause DVT and PE. Since when you are on warfarin you need blood checks tI wouldn't have thought there was a problem taking both - but because they don't understand the difference lots of doctors happily hand out aspirin for patients with atrial fibrillation or DVT even though it doesn't help.
When you take pred you are at risk of developing osteoporosis - without a baseline dexascan to look at the bone density they don't know what sort of supplements you need. For most people who have a normal bone density when PMR starts calcium and vit D tablets are often enough - that's all I have had and my bone density hasn't changed significantly. If there is already a problem others may need something more. But doctors hand out the heavier duty meds like sweeties thinking it can avoid the problem but it doesn't work that way and these drugs aren't as safe as the drug companies suggested when they launched them.
Thanks PMRpro,you are so right,the Rheumy is writing to my GP now regarding my 10 collapsed and bulging dices,at the moment they are not touching anything like my spine so only have pain when I do any house work, I can walk OK so consider myself very lucky indeed,as you may recall I have 2 beautiful red & white sheep dogs,
I do blame myself for not taking the Alendronic Acid tabs when diagnosed 2.1/2 years ago,but I also blame GP for keeping me on high dose of preds and forgetting about me.
and it was my Rheumy that said you should have been reducing months back
Thanks for the info regarding my Adrenals sambucca,All the best to every one enjoy the good sunshine.kind regards Anne
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