I'm new here but not on the PMR forum! Yesterday I had the result of my first ever Dexa scan: -3.6 so Osteoporosis it is☹️. Shock, horror!
I have all the risk factors: 1 year on Prednisolone (now on 5mg), female age 72, always lowish body weight ( now 58 kgs), but never had a fracture, lots of exercise ( a Scottish dancer till PMR struck), good diet- lots of dairy, fish no red meat.
Stomach issues as a result of steroids but otherwise doing well
So AA or not??? Please your thought and experiences would be gratefully received.
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Portobello
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Sorry, no one with experience is getting back to you yet. I was diagnosed at the start of January after I broke both bones in my wrist. I’m 71, a bit overweight but I’m losing weight at the moment, I’ve always eaten well but several women in my mother’s family have had osteoporosis so I knew it was lurking away in the background. I had had a few nasty falls and not broken anything then in January I rolled off the bed onto a wood floor and there I was!
My lumbar spine is 3.0, femoral neck is 2.7 and hip is 2.1. My Pilates teacher who is a physiotherapist said that if she had my numbers she would definitely take the AA which swayed me, besides I’ve discovered I know several people who also take it and say they are fine with it.
In 2012 developed Graves’ disease - overactive thyroid with antibodies, then a couple of years later I developed inflammatory arthritis which I could have done without. I took a short course of steroids for that which tipped me into steroid induced T2 diabetes. I went on a low carb, high fat diet and ate my way out of the T2. Basically I had loads of markers for osteoporosis. I started on AA back then. I felt very uncomfortable taking it to be honest.
Within a month of starting AA I got a massive sinus infection and my teeth hurt. I had antibiotics and they worked for a while, then I had another one and got more antibiotics- then my teeth all started to hurt and the dentist’s receptionist in full PPE handed me a prescription for yet more antibiotics by that time my ears ached as well and I felt ridiculously tired so I stopped the AA. I’ve since been to see my dentist and had x rays and I know my teeth are ok and since stopping the AA my sinus pain has gone.
I’ve been stopped for four weeks now and I’m taking a pile of the ‘right sort of vitamins and minerals’ for bone building and I’m exercising like mad but sensible things that are suited to osteoporosis.
I’m tempted to try the AA again - I feel scared taking it and I feel scared not to - my husband isn’t at all keen for me to do that because he said I was always moaning, my muscles ached and I had no energy or interest in life and I barely cooked anything because I felt so rough. Suppose he has a point.
Like I say since I stopped I feel a lot better and I’m tempted to try again, mainly because I’m wondering if I was just very run down before I started the AA, I had had an awful virus that wiped me out from before Christmas, until after New Year. I was only out of bed for three days before I broke my wrist - then I had complications with it so I’m wondering if I might feel better if I start again now that I’m feeling more normal - I haven’t told my doctors I’ve stopped.
I didn’t find it difficult to take, I took mine on a Sunday morning with a large glass of tap water then set the timer on my phone and went for a half hour walk before I had breakfast.
Funnily enough the one thing that I haven’t had a problem with is my stomach / gut - no reflux or anything like that.
Sorry this has turned into an essay and I’m not sure if it will help you make up your mind but it’s one newly diagnosed person’s point of view. Hopefully you will get will get more replies.
It would be worth joining the ROS and looking at their website - you will find a lot of very useful information about all things connected with osteoporosis. Good luck with it all. It’s a bit of a shock when you find something like that.
Thanks for your interesting reply- especially your experience of sinus issues which I've suffered from most of my life. I'm very reluctant to go down the AA route but am aware that my numbers are cause for concern. I'm just not sure how I could improve things without the help of medication.The ROS website is certainly useful, the exercises in particular.
As you can see I’m not keen on taking AA myself. It’s an awful decision to have to make. When it was prescribed for me I was in colossal pain which I think coloured my decision.
If you look through the Bone Health posts you will find a lot of people who have refused AA and you will be able to see their stories and a lot of people have posted details of what they are doing. Click on ‘Related posts’ at the top right hand side of this page.
Can I ask why you were given a DEXA scan if you haven't had a fracture? Was it because you've been taking steroids? The reason I ask is because the biggest risk for future fracture is having already had a fragility fracture (one that wouldn't happen to someone with "normal" bone density, for example by falling from standing height). Also, you should have had two t-scores, one for your hip, the other for your spine. What was -3.6 for, and what was your other score? Again, I have a good reason for asking. I was diagnosed at age 58, with t-scores -2.3 hip and -3.2 spine. A further scan 3 1/2 years later and my scores were -2.5 hip and -3.6 spine. I haven't had a fragility fracture. Last year (16 months after my 2nd DEXA scan, I had a private EchoS (ultrasound) scan, which is more reliable than DEXA and gave my scores as -2.6 for both spine and hip, so it appears my spine score with DEXA was quite inaccurate and almost certainly not in the osteoporosis range when I was first diagnosed. The consultant who did the EchoS scan told me there's no need to take medication with scores of -2.6, no fractures and no other risk factors for fracture. I hadn't been taking any meds anyway for 4 years, having tried first Alendronic Acid for a few weeks, then Risedronate for a year. I gave up medication altogether because I just wasn't happy with the side effects, though I should stress that plenty of people don't get any side effects; as with all medications, there are always potential side effects, but some people get them and others don't.
Ultimately only you can make the decision about meds, because we're all different and have a different approach to our understanding of risk, side effects and so on. If you decide not to take the medication, you need to be aware that it needs real commitment to an active lifestyle (sounds like that shouldn't be a problem for you), healthy diet and ideally a range of supplements. My diet is low in sugar, caffeine and alcohol, high in protein, calcium and magnesium. I take high dose Vitamin D to keep my blood level over 100nmol/litre (Vit D plays an important role in absorbing calcium from food), K2-MK7 to help send the calcium to the bones, boron, a small amount of magnesium, Vitamin C and zinc. I try to exercise regularly, including high impact and with weights and resistance bands.
I would also add that I'm not entirely convinced that we're more at risk of fracture if we have low body weight. There's evidence now that if you're overweight you're at increased risk of fracture (presumably because you fall more heavily). If we're light weight, our bones don't have as much force placed on them, but equally they don't have so much weight to support, so there's no reason to think this would be detrimental.
Finally, the professionals often fail to tell us that bone density and bone strength aren't necessarily the same thing. Spanish women have lower bone density than Scandinavians, so would be expected to fracture more, but in fact they fracture less than Scandinavians! There's actually a separate measure, called the trabecular bone score, which gives a more accurate idea of bone strength. It's available on a very limited number of DEXA machines (I think just at some teaching hospitals) and is also now available on the EchoS machine I've mentioned. It's all very complicated, so I recommend you take your time to do your own research before making a decision.
Thank you so much for sharing your story which is packed with useful information! I requested the Dexa scan. My GP is very hands-off and everything I know about PMR has been through HU. I'm a researcher by trade and I thought I needed to have a ballpark measure, at least, after a year of Prednisolone. The -3.6 figure was given to me only after I asked and I was so surprised that I completely forgot to ask for the second! I will continue with my healthy lifestyle (PMR permitting) but concentrate on your advice and that of others on HU and wider. I certainly won't be doing anything in a hurry. Thanks again.
My scores were worse than yours 2.5 years ago. -3.7 spine, -3 neck of femur, -1.8 hip. I used natural methods and 2 years later improved to -3 spine, -2.4 neck of femur, -1.3 hip.
I was 62 and took no drugs. I credit my improvement to weights at the gym. As gyms closed due to pandemic and no possibility of them opening any time soon.....due to where I live unfortunately......my progress now will be limited.
Thanks that's really encouraging. I really don't fancy mixing steroids & AA. I have some home weights and a band so will try and get an exercise regime going while I continue to taper Prednisolone. Lots of useful info re supplements so I'm really tempted to go it alone. 🙃
I’ve been on Alendronic acid for nearly 2 years without any bad side effects. Although I haven’t any previous stomach problems like yourself. I think one of the main side effects is indigestion, so maybe discuss this with your GP, maybe they could advise an alternative.
Like Fruitandnutcase suggests look at the ROS website and try a call to their helpline to talk to one of the OS specialist nurses; you don't need to be a ROS member to use the services.
There are a Charity and would welcome new members you get a newsletter with good tips, but don't need to join before contacting them for a bit of advice. You could always choose to join in a year or twos time.
Regarding weight I understand that being 'light weight for your height' can mean you have small fine bones. After a road accident some years ago (came off my cycle in centeral London and managed to fly accross four lanes of traffic!) I had xrays just in case as I was badly bruised etc. This was the first time I'd had an xray, I was convinced that the xrays where not mine, I'd seen children's xrays showing thicker bones! I realise that bone density is different, it is the 'make up' of your bones that matters, but having weedy bones doesn't help! At 5'6" I was between 55-58Kg all my adult life, until I really started to have problems with OS then I lost height and weight.
I also know you can have OS and not have fractures.
Sorry but I cannot help on AA, hope you get some more replies from AA experinced users and ROS.
Your cycling accident sounds impressive! Must have been scary. I once came off my bike in France, they have strange sloping kerbs, it was pouring with rain and I decided to bounce up it when the wheel skidded sideways and I ended up lying on the road in front of a car.
Looking up and being face to face with a car isn’t fun as you will realise. I also used to fall off my bike regularly when I would cycle round a car park waiting for my husband to get ready. That was always because I had so much weight on the front and I was trying to turn in to small a circle.
I had had a colossal fall last summer - from the platform of a bus onto my knees and both wrists landed on the bags of clothes I was taking to a charity shop - no problem. When I didn’t break anything after that spectacular fall I was sure my bones were ok. Especially as I’m the height I always was plus my theory that I was too plump and have very few wrinkles for my age.
Then one dark night I made a last minute decision to go ton the loo before I went to sleep and managed to roll off the bed (very annoying because it was so dark I still don’t know what actually happened) and broke both bones in my wrist.
Are you cycling again? I haven’t needed to cycle for a while because I mostly cycle abroad on holiday or if we go away for a ride at the weekend and then mainly on tracks but I’m wondering how safe I will feel now I know that I might break easily 😟.
So glad I'm not the only one that lives life to the full!! Your cylcling mishap sound just as scarry.
Sounded such bad luck to end up with fractures on a mere night visit to the loo!
Sometimes it doesn't seem very logical how a bad fall etc. results in no broken bones and a small feeble fall results in fractures.
Part of my recovery has been to get on to and use an exercise cycle, having ridden every workday for the previous 28 years and at the weekend for leisure it was just so much a way of life. It became part of my path to mobility after rebound spinal fractures. I cannot yet even with a spinal corset manage to hold my head up or steer when I tried to ride a friends tricycle, so just keep to the exercise cycle. It's been 2.9 years since the fractures, I'm gave my cycle away when I knew I would be permanently disabled but there may be something that will suit me one day. My husband still hopes I'll be able to manage to sit on the rear of our 1930s tandem, even if he has to do the bulk of the work and/or fit a motor!
Sadly cycling is not as great for OS exercises to promote bone strenth as other things..... but it's fun and helps get the vit D.
I’m so sorry to hear what happened to you. So much worse to have to stop when cycling was such a way of life for you. Cycling gives you a wonderful sense of freedom doesn’t it so you must really miss it, it probably sounds odd to someone who doesn’t ride bikes but it’s amazing how much you can love your bike.
A tandem sounds a pretty good alternative once you reach a stage you could manage that or as he says you could fit a motor onto it if you need to. At least it isn’t one of the best exercises to do for osteoporosis
No, the really galling thing about my accident was that I didn’t even need to go to the loo, it just seemed like a good idea at the time - I didn’t actually go until after I got back from the hospital where I was x-rayed twice, had my wrist manipulated and then plastered which all took a while.
Stop press : My husband has just announced that Le Tour de France is due to start in the 29th August, I don’t know about you but I love watching it. We managed to catch it a few times when we used to go to France when it was on and we’ve been to most areas it goes through so if it goes ahead that will have to be the closest we will get to to a holiday in France this year. Don’t know how they will cope with the masses of spectators on the mountain passes though.
Good luck with you right recovery hope you’ll make it onto that tandem one day soon.
I think like any hobby/ way of life it is hard to manage without it, but you just have to look at what you still have and are able to do. I had missed the news re Tour de France, something to look forward to, hurray.
I took AA and riseonendrate (sp?) and I am still suffering from acid reflux three years later for which I have to take medication. I recommend a zolendrate infusion once a year.
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