I was diagnosed with GCA and PMR in February and started with a 3 day IV course of Prednisilone then went on 60mg a day tapering down to 10mg in about June when I had a flare up, bounced up to 25mg and am now tapering by 2.5mg per month.
I had a DEXA scan around about May time but didn't hear anything back until I was recalled to the eye hospital in July when the consultant told me that my results indicated I had bone thinning and she prescribed Alendronic Acid. There was mention of a T score being low.
I haven't taken this because I would like to understand more about what I'm dealign with. Like, what should my T score be, how far below this was my test result, do T scores fluctuate over time, so for instance could this be related to the high dose of Pred I'd been taking.
Then this week I had a call from my pharmacist who, very diligently, had picked up on the fact that I was well overdue a repeat prescription of the Alendronic acid and I told her about my reservations and that I'd been unable to get an appointment with my GP to discuss, at which point she looked at my records and told me "It says here you have Osteoporosis"
Hmmm. The results say I have a WHO FRAX 10 year hip fracture probability score with BMD
4.7 % and a 10 yr osteoporotic fracture probablty scor with BMD
25 %
Does anyone here know if that's a high risk? I'm 58 so hopefully will see out the next 10 years.
Wondered if anyone has any experience of Alendronic Acid or alternatives to it? It sounds quite a heavy duty medication to go on and I don't like the sound of the implications if I have dental problems.
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Brizzleben
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You need to get your actual t-scores for anyone to really make an informed comment.
t-scores do change - but without intervention of some sort they tend to get worse rather than better. It sounds as if your t-scores were well into the osteoporitic range:
"A T-score between -1.0 and -2.5 means you have low bone density or osteopenia. Examples are T-scores of -1.1, -1.6 and -2.4. A T-score of -2.5 or below is a diagnosis of osteoporosis. Examples are T-scores of -2.6, -3.3 and -3.9."
Levels round about -1.6 are felt to need no drug treatment but as they get lower there is more need for something to be done. Doctors tend to immediately reach for alendronic acid or its like - it is taken up in the bones and attracts calcium to form denser bone. Denser doesn't automatically mean less likely to fracture but for people with low bone density it does form some protection for the first few years of taking it. Taking it for more than 2-3 years isn't recommended now because taking it for too long seems to result in cracks forming - which make the bone more fragile.
I refused to take it when I got my first dexascan - but my scores were about -1.1 to -1.3 and on subsequent scans they hadn't changed significantly so I feel vindicated.
The link I gave you for the information about dexascans is from the USA - if you are in the UK you could call the National Osteoporosis Society helpline and they will answer your questions and explain your options. But it does help to know your dexascan results with numbers rather than just the FRAX score.
When the results eventually came through from my scan, it stated that I had osteoporosis but on finding info myself I came up with osteopenia, which was confirmed in letter by one of the consultants.
I was given the death threats if I did not take Alendronic Acid.
I discussed it with my doctor, who at the time was dealing with a patient who had Osteonecrosis of the jaw from taking the AA, he said that he wasn't going to press me to take it.
As it was, on reading my results, they got my height wrong by two inches plus my BMI.
Trying to interperate the results of these Dexa scans is not an easy task, I wonder if they make it that way to confuse us.
I take Calcichew D3 Forte.
There is plenty of information out there on AA and some it it is not good reading.
My doctor, who only received a summary not including the t-score, told me I had osteoporosis and wanted me to take AA. Eventually after some difficulty I got my t-score and it was "osteopenia". I, too, was told I had a 10% fracture rate within 10 years. My risk factors included prednisone, age, a previous fracture which they classed as "fragility" although I've always questioned that. Refusing the drugs which I feel are extremely dangerous I set out on a journey to improve my bone density through more natural means. I have been successful in doing this and the medication is no longer recommended.
My doctor wanted me to take Alendronic Acid and my bone density was in the normal range. It was just because I was taking steroids. I have the occasional fight over it.
The trouble is that documentation says that Alendronic Acid should be given for someone who has been on steroids long term. That is what the doctors go by. I am not sure that they look at giving AA any differently to giving other medications.
PMRpro: my comment refers to what Heron said above whose "doctor, who only received a summary not including the t-score, " .... I am blessed with a GP I really like and trust so I'm hanging on to see her when she gets back from holiday in a couple of weeks and wonder what information she will be able to access from my DEXA scan, hence my comment.
My doctor could have received the full report upon request. In the end I got the information I needed to be getting on with, but not until I showed up one year later for the followup DXA scan with a letter from the GP asking that I be given the full report did we get the reports for both first and second scans, along with the pictures, etc. Even then they wouldn't give them to me but had to go through the GP's office, and I had to waste her time and mine to have an appointment to collect them!
Thank you, Heron. I have reread that post: there's just so much to think about; I always just took bone heath for granted and expected my normal diet and activity to take care of things.
I notice that you don't mention Adcal - I'm on two x 750mg calcium carbonate plus 5mg Vitamin D daily which is way way above what you say elsewhere can be absorbed by the body. Interested also to read that Pred and calcium should be taken at different times of day.
And I don't take K2. Is that available on the NHS and if not is it cheap in the UK?
Sorry, I live in Canada, have to buy my own supplements, none of which are covered by our family's drug plan. I find K2 is expensive, but so is the kind of calcium supplement I take, but I think developing osteoporosis is more expensive.
You can get K2 through diet. If you can track down natto you can get more than enough. Otherwise, the traditional source was grassfed animals (never grain fed, not even "finished" with grain) as they will convert K1 to K2 for us. We also make a little, but not very efficiently, and with our modern diet that's why we are becoming deficient. I think K2 is also available in a few other foods, like fermented vegetables, some cheese, but I don't suppose we have any idea whether a certain variety contains any, or how much, hence the suggestion to take supplements.
These days you are lucky to get even calcium/vit D on prescription! And I DON'T THINK k2 IS EVER "CHEAP". I was horrified at the price here in Italy! Each AdCal tablet is about the maximum the body can absorb at one time - it isn't 750mg calcium I don't think, it's the equivalent of less.
Hi Brizzleben : Breathing Issues, refux issues and AA
I was diagnosed with GCA in 2015. I did not do enough research and took AA for
a year as prescribed because I have severe osteo arthritis in both knees and back.
I finally found this sight and read and read and also did not like what I learned about AA.
I qualify for a bone density scan per year and last one was in he ok range. The winter of 2016 and into Spring of 2017 I developed breathing issues. Started I couldn't catch my breath in the cold. By Spring it was happening a lot and one day I rode bike to my GP
and when I got there I was in trouble. I was prescribed inhalers. The one worked to
heal the bronchial but Ventolin did nothing. That summer I was locked in the house for
5 weeks because of smoke from fires. I was sick, breathing, sinus and acid reflux was so bad I had to sleep sitting up. So I reviewed all my notes( I keep a daily diary). The only thing I could eliminate was the AA so I did and the Rheumy at the time was ok with it.
I expected no change for at least 3 months. The change came. Been one year.
Today my breathing is normal. I am working on changing the PPI Pantaprazole to stop acid reflux to Ranatidine. Pantaprazole stops production and we need acid production to absorb Vit C.
My sinus issue is Pred related as I notice the sinus improvement with every drop below 10mg. For the first time in 1.5 years I slept laying down a week ago.
I am on 8 mg for 2 months. I have found I am very sensitive to drops and do only a .5 each time. I take 1300 mg of Calcium and 5000 Vit D. ( test showed low Vit D 10,0000 for 2 months then 5000 and retest) I have refused to go back on AA and have always added ankle and wrist weights to my day.
Next drop to 7.5 in one week I will integrate for 1 week ( every second day the new amount) if ok will go full change and stay for 3 months. I have had flashes of energy and a bit of nausea , signs my adrenals are waking. (I hope)
My Rheumy was not pleased but you are advocating for yourself all the time. I now have a great Rheumy that asks me what I want to do.
Almost forgot, breaking point for me was when I started having food caught in my throat.
I will NEVER take AA. too many scary side effects and they say you can only take 3-5 years..so what to do when I'm 90? I am 71 (72 in 20 days) I have osteoporosis.. and they say a 12% chance of fracture. (I read 88% chance of NO FRACTURE) I take tap dancing classes for absolute beginner adults (it is GREAT FUN!) which supposedly is the BEST exercise for your bones. (you can also do heel drops see youtube) I wear (should wear more) a weight vest and I walk at least 10,000 steps a day to ward off imminent death for all sorts of reasons! (now to watch out for those runaway trucks while I'm out walking.) good luck!
Thank you, Yogabonnie; I’ve heard that exercise helps build bone density. That’s the kind of approach I want to take, rather than medication. I’d never thought of doing tap, but I might just!
You might also want to try vibration training. I understand that the vibration machines were developed for astronauts who lost bone density in space. I was diagnosed with osteoporosis soon after menopause ( years before PMR & steroids) have been using the machines for years, as well as doing lots of walking & taking a much less effective ( but with fewer side effects drug) & my bone density improved. About a year ago (still pre steroids) it suddenly started to decrease & I decided to take AA.
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