Hi all, just wanted to see if anyone has some more advice for me. I just got my DEXA results and am feeling very anxious and unsure which way to turn. I have not taken alendronic acid yet although I have the prescription at home. My T score for my spine is -3.1 which I believe is pretty bad?? Hips are -1.6 and -1.4. They put my FRAX risk at 14%. I really didn’t want to take the AA due to the side effects and wanting dental implants at some point when I can afford them, but don’t want a spinal fracture either. I am surprised I have osteoporosis as I have always been active. I have owned my horse for 22 years and am still riding him a couple of times a week plus all the stable work. I do 10,000 steps per day easily on my 4 work days per week and do well over double that on my days off. The only thing I can think to add is some weight training. Should I take the AA and forget the dental implants or persist with diet, supplements and trying to keep fit and active?? Thank you.
PMR/Osteoporosis update: Hi all, just wanted to see... - PMRGCAuk
PMR/Osteoporosis update
Hi , I can understand the dilemma you have. I just looked at your previous post to get a context. I just wondered if you were on other meds like a PPI? Just looking at your age. Is there a family history or other reason you have osteoporosis DX? Obviously you don't need to say anything.
I wondered also if you had read the link to the story of managing bone health provided by HeronNs? I know the link was put in a reply to your message.
We are often critical of AA but I think the fact that your scores are in the osteoporosis range might be indicative that you ought to take something to aid you. However I am not an expert. Hopefully someone else will be able to help more. You don't have only have the choice of an oral dose of AA. There are other regimes that may suit you better. 🌻
The hip figures are good, well in the osteoepenia range. It is the spine that is the problem. Are you in the UK? Maybe it is worth contacting the Osteoporosis Society helpline and ask what is recommended for spinal problems when other bones are fine
There will be an equivalent in the USA.
There are other biophosonates you can have go the the National Osterporosis website site theros.org.uk/ Read up and choose.
GPs reach for that one because reps have visited etc.................
PMRpro has given good advice.
Yes, thank you PMRPro I will call first thing on Monday when the line is open. Thanks to you all for your help. I am only on Pred for the PMR and Adcal, no other drugs. I had 1 aunt who had really bad osteoporosis but she was on epilepsy drugs for most of her life following TB and a head injury - I told the radiographer this when I had the DEXA and he said the old epilepsy drugs were a prime cause of osteoporosis. How long does it take for the Pred to affect your bones? I seem to remember reading that they can have a rapid effect?? The second week I was on Pred my nails (normally really strong) started splitting, peeling and breaking and I wondered if this was calcium related?
I had been on pred for over 7 years at the last dexascan I had, there had been almost no change in bone density and my t-scores were still firmly in the slight osteoepenia range. I have only ever taken calcium and vit D. Loss of bone density is not inevitable although it is felt that most change is in the first 3 months and at higher doses.
I think the biggest effect on the bones is in the first three months of prednisone therapy. Whether this is mostly because that's when we are at our highest dose or whether it's something to do with the way the body metabolises calcium when on pred, or a bit of both, I don't know. Pred and calcium do interfere with one another so should never be taken at the same meal.
Do you take Vitamin K2? This sends calcium to the bones and is often lacking in a modern diet.
If s/he hasn't done it yet your doctor also needs to investigate whether there is another reason for your apparent bone thinning. One can't assume it's only the pred. For example, some people have been discovered to have parathyroid issues and when this is dealt with bone density begins to improve again.
The report does ask my GP to investigate anything else which may have caused the osteoporosis. It’s in code 😆, ie look for underlying causes of low bone density : FBC, LFT, U&E, bone vit D & protein electrophoresis. If calcium raised check PTH. Also something about if BMI < 20 check -def not the case!!
After reading the advice on this forum, I take my Pred after breakfast and adcal D3 plus K2 and magnesium after lunch and more adcal D3 after dinner.
I have been referred to rheumatology and am awaiting my appointment. I had a fairly early menopause, finished by 47 years old and although not without symptoms I wanted to stay natural and not take anything although I don’t blame anyone who needs to. Wish now I’d gone for HRT and maybe wouldn’t have this problem! Hindsight!!
I hope you don't mind me piggybacking this paper on k2.
Sorry to read you have osteoporosis. I had a similar shock last year - I had a dexa scan and was horrified to see how low my BMD was. Like you, I was reluctant (terrified!) to take AA, but I eventually succumbed - started in January. The side effects have been minimal - on the day I take AA I feel exhausted and quite itchy (probably psychological?). Could you speak to your dentist re AA and the treatment you hope to have? Maybe you could have the treatment before starting AA then pay in instalments?
I have made a pact with myself that I'll take AA for a year then see if I can have another scan. In the meantime I've also been making a kale smoothie every day (very alkaline and also high in calcium) and I've been taking calcium, magnesium, vit D supplements, so we'll see...!
I suggest you keep going with diet, supplements & exercise... and also speak to your dentist. Please let us know how you get on.
Please do take care riding. I found I had osteoporosis the hard way, after a ride with lots of trotting and helping put the horses to bed, I developed a horrid back pain which turned out to be 2 vertebral wedge fractures. Subsequent dexa revealed spinal score of -3.1 and hips not much better. Doctors are dead against any riding or horse wrangling, so I have reluctantly given it up, my old pony is now being looked after by daughter in law and son and giving pony rides to friends! I had been taking AA and then risedronate which appear not to have had much effect. Just had an infusion of zolendronic acid which may help hopefully. I'm afraid that in my case weight bearing exercise and good diet as well as bisphonates were not enough to stave of the fractures.
Giving up the riding was a wrench, now the family only let me stroke the pony's nose over the gate!
Thanks Cally55, it really feels like these horrible diseases take your life off you bit by bit! I keep telling myself that there are people much worse off but struggle to adjust as each new bombshell drops. I hope you are feeling better, has your spine strengthened since you have had treatment??
No,I am afraid not. I had the first two fractures april 2018, this February, before those two had healed, I had a bad go of bronchitis and fractured another one and a rib coughing, thus setting back any chance of riding again by another year. The last bone specialist I saw told me that spinal fractures can take up to a year to heal, and usually take 8 or nine months, in spite of all the osteoporosis nurses etc saying 3 or 4 months. NHS gives DEXA scan every 5 years, or 2 if special circumstances. I don't know why, the rest of them seem to be x raying me every fortnight! Presumably not much improvement is expected in the near future.
Years ago (many) I got fixated on ‘natural childbirth’ . I was determined not to have any drugs. Unfortunately the baby presented facing my abdomen not my back. This meant a prolonged very painful labour which led to a difficult birth with all sorts of repercussions that could have been avoided if I had not been so obstinate! The point I’m making is that bio-sulphates are not from the devil and as always side effects vary from person to person. Osteoporosis is no joke and if modern medicine can help I would take full advantage of it with a happy heart and sensible awareness of how I myself am affected, my body - and not anyone else’s. Whatever you decide the very best of luck 👍
Thanks Thelmarina, it’s hard to adjust when I’ve always avoided medicines where possible and the listed side effects are so scary! I am coming to the conclusion that I will take the AA and have to face dentures when my bridges give up - just hope its a way off yet! 😆
To go with the comments just above: you can take all the bisphosphonate in the world but if your GP doesn't check the calcium and vit D levels and make sure they are OK they will do no good at all. The calcium must be available and the vit D there to do the job of fixing it in the bones with the aid of the bisphosphonate. Celtic of this forum told us about an aunt who had had years of bisphosphonate - and had loads of spinal fractures. The consultant said it had been a total waste of AA. Two years on Prolia I think and she was back to tennis and dancing - in her 80s!! But now, Prolia is wonderful but means a life sentence probably. But that isn't all bad either.
Thanks PMRpro, I had more bloods taken a week ago so will ring my doctor to discuss the results plus the DEXA tomorrow and make sure that my calcium and D3 levels are checked if they haven’t been already, also will ring the NOS helpline tomorrow and discuss the best way forward.
I've just started a new thread on the Bone Health forum with a link to this article:
americanbonehealth.org/bone...
And while I'm at it, here's a link to my own story:
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