Hellelujah......Dexa results at last!!
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After weeks and weeks of attempting to get the dexa results, made appointment with my lovely doctor (not the smiling assasin, I have for a Rheumy!) and got them (of sorts!) I am perplexed as to weather to have the Zelondronic Acid infusion (yearly)...I cannot tolerate meds at all, (because of fibromyalgia) tried all other biophosphonate....my doctor thinks I should, but these are my reading, which are not as clear as other readings that have been posted on here. It states my lower spine is weak (osteopenia) -1.6, femur -0.1(normal)....femur neck -0.5.(normal) That is all I have from the printout, I hope someone on here (Eileen!) can give their opinion on this....My doctor says Osteoporosis is a dreadful painful disease...yes, I know this....
Also, the rheumy wanted me down to 10mg....I have been on this dosage 2 weeks, but by lunchtime, I`m in pain....always drop .5mg...4-6 weekly, so don`t know what to do....I have been threatened with methotrexate if I don`t come off steroids....no way....but my doctor has offered a steroid injection if I want...how do they work in together?? Would appreciate any opinions on these confusing situations...yes, I have Pred head! Thank You.
0 likes, 15 replies
EileenH linda17563
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Scores between -1 and -2.5 indicate Osteopenia (thin bones).
Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows serious Osteoporosis.
Your T-score shows you have osteopenia in your lower spine - and not anywhere else. I'm not at home so I can't look at my results but I'm fairly sure my readings are about -1.5, mid-range osteopenia, and no-one here thought that requires any drug intervention at the moment even though I am on pred. It might be a different matter if the readings get to -2.1 - but even then, it would still be up for discussion unless I had progressed from -1.5 to -2.1 in a space of 2 years. Then I would be concerned that I'd be at the osteoporosis level within the next 2 years.
I've read quite a lot this afternoon - and it isn't as simple as just "the dexa scan is OK" - because there are other factors. There is another assessment called the Fracture Risk Assessment Tool or FRAX. It takes other things into consideration - including vit D status, history of fractures and estimates your risk of a fracture in the next 10 years:
"Treatment of osteoporosis should be considered for patients with low bone mineral density (a T-score of between −1.0 and −2.5) as well as a ten-year risk of hip fracture of ≥3% or a ten-year risk of a major osteoporosis-related fracture of ≥20% as assessed with the FRAX."
I wonder if you can persuade your GP to investigate that? Taking steroids is peceived as a risk factor - but have you ever broken a bone easily, is there a history of hip fracture in your family, have you a low body weight and a range of other things including poor depth perception and tachycardia which make it more likely you would fall and break a bone.
If it were me I would say "No thank you" to any drugs at the moment and say you will reconsider if there is any deterioration in 2 years when you have a re-scan.
I don't have fibro, drugs rarely disagree with me - and I would still say no thank you yet - but I suspect your doctors will take the American College of Rheumatologists line which is "patients on pred need bone protection". Whether that is going to change in view of the more recent evidence that suggests the bisphosphonates are NOT as inoffensive as the makers claimed remains to be seen.
As for the reduction of the pred dose - I think you need a different rheumy. Either you take enough to manage the symptoms so you have the benefit of that to balance the downsides of pred or you don't take any at all and suffer the pain and immobility of PMR - also a risk factor for osteoporosis.You need what you need or you don't bother.
I honestly don't know Linda - I know what I'd say because it is my decision but I can't tell you what to say.
linda17563 EileenH
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The form the doc has given has got "FRAX" on it...with lifestyle/etc and does say long term steroid use, Biophophonate treatment is recommended as the patient`s Tscore is -1.6.....
The 10 year probability of fracture is 10%...hip fracture 0.8%....but it`s all probabilities!....I have been on the Osteoporosis webpage and forum....and I`m going to wait a couple of years to see if thin gs have changed with a further dexa scan,.....one lady on there was told the infusion is inside her for 10 years!....most have mild side affects some not very good at all.....not feeling too well, I`m not prepared to add to my problems. The last thing the Rheumy said to me was, I`ll see you next when you`re down to 5mg....as I was leaving, I was mumbling....you`ll have a very long wait then!...She has told my doctor I`m doing the reduction the SLOW way, too right I am!.....Thanks once again for taking the time to reply, and all your detailed advice...
EileenH linda17563
Posted
The "it's in your body for 10 years..." bit is just what they have got to so far. Bisphosphonates have been in general use for about 15 years, the most recent assessment is that after 10 years the stuff is still there. The next will say "after 15 years..." and so on.
Slowly it is beginning to dawn on them that they DON'T have a clue about the long term effects - something that was obvious to a lot of us a long time ago.
However - there are a lot of things you can do that will minimise the risk to you and it pays to look at them. People with low bone density do NOT necessarily have broken bones and people with normal bone density do. I gather the biggest risk factor for spinal fractures is the existence of undetected fractures now - it is possible to have "cracks" that don't hurt. They can be seen on a spinal x-ray - so maybe that is also something to discuss with your GP? If they are already there then that changes things quite a bit. But at present, you have a 90% chance of NOT having a fracture. That sort of percentage makes it worth buyng a lottery ticket!
linda17563 EileenH
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.There is an article in the health section of the Mail on Sunday today (only buy it for the crosswords, honestly!) all about Biophosphonates!....and the side affects..........interesting, but nothing you don`t already know.....this will scare some people I`m sure....but like myself...it`s weighing it all up, and deciding for yourself...I am ringing my Rheumy`s sec tomorrow to say....not at the moment thank you!...
Enjoy what hols you have left, and hope your weather is more settled than we have here (Norfolk) usually around my birthday (last week) it`s nice and settled, but not this year....
glasses not needed!
EileenH linda17563
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linda17563 EileenH
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EileenH linda17563
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And yes, they got it a bit wrong - it rained all night as promised but there were no real thunderstorms...
linda17563 EileenH
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We now have rain, and thunderstorms are promised....but it is warm....
Hope you enjoy the time you have left there.....as I say.....Jealous!
EileenH linda17563
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linda17563 EileenH
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What I do remember of the trip, apart from the wonderful scenery travelling up, was, people mountain climbing to the top.....why would you
linda17563 EileenH
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EileenH linda17563
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I can't think of a downside - the food is good, the wine is good, the people are lovely once you get to know them. Downside for the average Brit might be that you have to speak German or Italian for almost everything - it's a German-speaking area within Italy so both are used and English really isn't spoken a lot. We've had 5 weeks with afternoon temperatures in the low to mid 30s with sun - very very hot if you have to do things like work. In winter we may get a similar amount of time with temperatures at night well down into double figures minus - -15C is normal. Shops, except supermarkets, close for 3 hours at lunchtime so you can't have a "day shopping" without a long lunch! Three hours in the morning, 4 hours in the afernoon. No Sunday shopping really. Not that either pose a problem to me - hate shopping and towns/cities. Tourists in high season bung the roads up dawdling along looking at the views - and in summer lunatic motobikers who appear to be tired of life and in winter skiers who don't know their limitations and end up filling our hospital beds.
Como - very PRETTY but I don't like it as much as you can't get down to the lake itself most of the way round. That's reserved for the very rich people who have villas there. We drove down the eastern side a couple of years ago - we couldn't even find a parking space to stop and it was HEAVING! The alternative is a road that runs through tunnels almost all the way along. Efficient but not very attractive! Garda is my favourite lake in some ways but it is too busy in season, here at Iseo is very peaceful - though it won't be in July and August I image.
linda17563 EileenH
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When we went to Venice, it was an eye opener seeing it from a gondoler...but somehow I always feel relaxed near water....I live not far from the broads, so will have to do with those now!
I`m not surprised what you have said about Como...but the one advantage of course is Mr Clooney!
EileenH linda17563
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So I gather this morning that cancer will be diagnosed or ruled out in 28 days - that should be interesting in its implementation. We're getting 5 million new doctors and diagnostics teams: "It's a matter of funding" says JH. Well, I'll be blowed - more money means better service? Who'd have thought! But where's he think he'll find them - bet I know who in the Syrian refugee camps will be offered places first.
This government would have everybody working 24/7 for no extra pay if they could. Except themselves...
linda17563 EileenH
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No extra pay for others, only 10% for themselves!