GP rang to say that recalculations had been done on my Dexa Scan and now I have osteoporosis in both my hips! I asked for time to make my decision, so all info will be helpful to me. MY own inclination is to say no thank you, because of all the side effects, and because I am already on so many drugs, but I will wait and weigh up the pros and cons
Thank you all for the help and advice over the last five months, I really value it.
What brought on the "recalculations"? Do you know what the t-scores are?
Bear in mind though that not everyone has adverse effects and there are alternatives to AA. But there does come a point where even I would consider taking something - in fact, I misread part of my last report and was quite sure the local osteoporosis guru would be saying "you need ..." - in fact she was amazed and just said, keep on doing the same!! After I'd been getting my head round the idea ...
Hi PMRproI don't know why the recalculations, and I haven't a clue what the t- scores are. Perhaps you could send me in the direction of reading matter? Have been looking at other members replies to the issue of AA in the past and one in particular I have bookmarked because it is well balanced.
You are entitled to a printout of your results nowadays. Can you ask your GP’s surgery?
The t-scores are the figures that show how your bones compare with a healthy normal 30-year old and so how much bone density has been lost..
You have to make your own decisions, so I'm not trying to influence you. However I'll just let you know that I was told that I already had osteoporosis and prescribed AA. I took one dose and it gave me the worst oesophagal pain I've ever experienced. I was given an appointment for an infusion, but after reading about bisphosphonates and the evidence against them, I cancelled the appointment. I was then given an alternative oral version which didn't cause me pain, but I only took it once as I wasn't happy about putting it in my body. I've no medical or scientific training, but the impression I had was that if I did break a bone, the outcome would be worse because of the hardening effects on the bone of the bisphosphonates. All this happened nearly 4 years ago and, so far, I haven't had a fracture or any bone problems.
Marijo..thank you for responding. I will keep this in mind👍
I have been on AA for two years without a problem after being diagnosed with oesteoporosis
Rosina.....much appreciated, thank you👍
I was on AA for 4 years - no side effects whatsoever. Didn’t really consider not taking it initially- I was in the suscepable group, having had a hysterectomy aged 37 and on a starting dose of 80mg Pred.
At the 4 year stage, and by then on very low dose I discussed with GP whether I required it any longer (at that time it was recommended at the 5 year point a break be taken off it). We decided I didn’t.
A DEXA scan done some 3 years after I’d finished Pred showed good readings, but it did include a recommendation to continue on Calcium/VitD supplement- which I have.
DL thank you for replying. There is info that I would not wish to put on the open forum. Could I contact you in an email instead?
You can use the chat function - it is the same as posting on the forum but can only be read by the person you send it to, no-one else.If you click on someone's name or avatar it brings up their profile page - and at the top right is a box saying Message. Click on that and a page comes up to write your message.
Will message you
Hi merril. Before my PMR diagnosis 2yrs ago, I'd never taken so much as a paracetamol tablet unless absolutely necessary, so when a DEXA scan revealed I was osteopoenic (the stage prior to developing osteoporosis) and the specialist wanted to put me on biphosphonates, I unsurprisingly refused. However, just 5mths into being on prednisolone, another DEXA scan revealed I now had full blown osteoporosis in my hips and lower back. This actually concerned me more than the medication because of it's fast onset and speed of progression. I agreed to take weekly Alendronic Acid and in the 2yrs I've been on it I can honestly say that I'm not aware of having experienced any side effects at all. I work hard at staying as healthy & well as I possibly can in order to help minimise side effects from the small cocktail of medication I also take. (This includes a statin, a beta blocker, calcium & vit.D3) It's important to remember though that different combinations of different meds will all interact differently with each other, and my experience won't necessarily be someone else's, but my point is, that it is possible for some people to take biphosphonates without experiencing problems.
Regarding my bone health, I've also researched what I can do myself to support that and now have a daily walk (good weight-bearing exercise) and do gentle yoga for osteoporosis every afternoon. The practice I follow is based on the 12 poses put together by a Dr. Loren Fishman.(Google it)...a practice specifically designed to develop all areas of bone enhancement. (Balance, muscle strength and bone strength)
I'm due another DEXA scan in a few weeks and I'll be really interested to see what improvement there is. If it's significant then I'll be stopping the AA. If that happens, I'm fully aware that at some point in the future I may need to consider taking AA again but I'll deal with that if and when it arises.
Staying as healthy and well as possible is everyone's aim in life, and sometimes we need a little help to do that. I don't want to end up in a wheelchair or in hospital with a permanently fractured hip because I was too blinkered to see beyond all the 'negatives'.
We have to weigh up all the pros and cons for each decision we have to make and when it involves any kind of medication, this can be challenge. No medication is safe.....I would even be so bold as to say that paracetamol is equally as toxic and dangerous as steroids or biphosphonates if you abuse or misuse them. You certainly don't need many paracetamol tablets at all to do irreversible or catastrophic damage to yourself.
It's about getting the balance right and this at times may inevitably mean making a choice we wouldn't normally make. 'Needs must' as they say! Only you know what's right for you so I hope my experience has helped you a bit and wish you all the best with your decision.
I took AA four times before getting a call from my GP saying to stop until I had been to the dentist. I did some research and stopped completely. It had given me heartburn.I take Vit d3/calcium plus Vit k2 and do lots of walking. My first dexascan showed very mild osteopenia and the next one a year later was normal. I carry on with this now
AA gave me stomach pains. I had a break for four months then tried risenodrate. No stomach pains at all. I haven’t been offered a dexa scan though by either gp or rheumy, have had pmr for 16 months and currently on 3-5mg a day. Good luck with your decision.
Read the book Your Bones by Lara Pizzorno. You are right to be very cautious about taking AA
I have osteoporosis and am on Risedronate, which is another bisphosphonate. I have had no problems in the 4 years I've been taking it and there has been an improvement in my spine at my last DEXA scan in January. This is in spite of a cumulative dose of pred of 12,000mg! I am also on calcium, vitamin D, magnesium and buy a supplement that includes vitamin K. Have you had your vitamin D levels checked? Mine were low and needed topping up with megadoses before starting the daily supplement and the bisphosphonate.
Hi MerrilI am one of the sceptics, but as has already been said, it should be a personal decision and everyone's circumstances and attitudes (for example, to risk) may be different. I did read 'Your Bones', and although I'm glad I did, it is a one-sided book. My DEXA scan suggested osteopoenia, but I had nothing to measure it against, and it's possible my bone density hasn't changed since before I started on Pred (I wasn't advised to have a DEXA scan to start with, which would have been helpful, in fact I only got one when I asked for it, 6 months into taking Pred, which I've been on for 20 months.) Some people's bone density is low from birth and never has been at the magical '30-year old norm' that is religiously taken as the 'ideal'. The real decider for me was my dentist, whose advice I trust, telling me to avoid bisphosphonates if I possibly could, and in fact she wouldn't be prepared to treat me if I started taking them, due to the complications she has witnessed over the years in her patients.
When I discussed all this with my GP she was sympathetic, and agreed with me that I would just take the AdCal (I also take a second VitD supplement and K2), and have another DEXA scan in 2 years to see if there's any change.
Good luck with whatever path you decide to take. Robin
My rheumatologist prescribed Alecdronic Acid last Monday after my dexascan showed -3.00 in L1 vertebrae lumber spine which was a significant jump from the dexascan I had just 9 months previously (before PMR) showing -2.00. I'm on 7.5mg of prednisolone which is not massively high and I'm starting my slow taper next week to get to 5mg before the end of the summer. I am eating all the right foods, taking calcium and Vit D and cod liver oil. Having done some research I've decided against taking AA and I know my rheumy will be upset with me but I feel so well at the moment I don't want to rock the boat by taking a medication with possible side effects including joint and muscle pain. I also want to do some more research on what I've read so far which is that changes to bone density don't always correlate with the probability of fracture. However these are my own thoughts and I'm not trying to influence you in any way. All the best.
Bear in mind that low bone density in a vertebra can result in what are called compression fractures - and believe me, they are very disabling and painful. My husband had one in January last year - and it has changed our lives.
Thanks PMRpro. I'd love to have another scan by a different hospital but having had two within a 9 month period I don't think I'd be allowed to. The technician who took my last scan was in a hurry and may not have positioned me correctly. However I realise I may be in denial so I'll just take a little while to make up my mind. I can't understand how the number has decreased by so much in such a short period of time particularly as I'm having lots of calcium and Vit D rich foods and supplements plus magnesium that I wasn't having before PMR. But hey ho, it is what it is.....
It may be the first that wasn't done as well - although actually you can't really compare scans done on different machines anyway. It is a bit strange there is just one bone that is so bad though.
Yes, it is strange particularly as the others (L3 and L4) have improved. Thanks for your input. Much appreciated.
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