Well worth a Dexa Scan to see if Bisphosphontes are essential!

My GP has been pressurising me to take Alendronic Acid and I have been resisting. She sent me to Dr Peel at the Northern General Hospital with notes designed to make the case for me to go on the drug. A bit like being sent to the Headmistress! Saying that I was fearful of side effects( I am).

Today I was told that my Dexa Scan showed that I had above average bone density for my age, in fact the bone density of a 30 year old! They were pleased that I was coming off steroids ( on 7 mgs) and after 5 mgs they wouldn't be too worried. They were happy that I was walking each day 6,500 steps at least and taking Adcal Calcium and vit D. My vit D levels are normal. If I have a flare and up my dose I have to tell them. They recommend another bone scan in about a year. I couldn't be more relieved and am puzzled that the GP had the same scan results and told me they were cause for concern. Why are some doctors so keen for us to take these drugs when they can have devastating side effects? I literally bounced out of there!

43 Replies

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  • Yes Dear Sheffieldjane, you are brave to insist on having a dexascan before taking that horrible drug. We can shake hands, it happend to me as Well. Hopefully we inspire others to ask a dexascan first. Gute besserung, get Well as soon as possible.☀️

  • I was interested to read this as I've never had a bone density scan or been offered one. I have been on Alendronic Acid since I first started taking the steroids as I was told it's essential to absorb the high levels of calcium I also need to take. I never even thought to question it. I must admit I didn't check for side effects on this either as I was so concerned about the effects of the steroids.

    Glad to hear you're bouncing, though!

  • I took a whole 4 AA tablets before stopping. In the 7 years I had been on pred at the last dexascan I had there had been a minimal change in BD, from t-scores of -0.5 to -0.7 for the left hip.

    Bisphosphonates are NOT essential to maintain bone density - they may be for some people but those people probably already had osteoporosis or at least advanced osteopenia - and nothing to do with pred.

  • Hi all. Been on Prednisone since diagnosed in summer of ‘15. Got down to 2 last December of ‘16, and was “ouch” “ouch” ing it up the stairs for eight months(though still playing tennis- pain not as bad when got moving). Anyway, had a bone scan before starting Prednisone in ‘15. It was a little better than normal for my age as have always been very athletic (4 brothers🙄) Just had another scan about a month ago, and my bones were even better with all the calcium and many other vitamins, change of diet(no meat hardly ever) . Have always been a milk drinker. Also, last August, got fed up with the pain and Sed rate of 46, so popped back up to 5mgs- a miracle. I learned this from you all- if there is a lot of pain,go up until you reach the right spot of no pain. My Rhumi said to stay there for 3months. I have been on pain vacation❗️Had Sed taken last week and it was 25❗️ After the holidays, I’ll check sed again and try going down by 1/2 at DSNS . I’m so grateful for what I have learned here. Don’t even hurt when getting up in the morning❗️I live in Seattle, Washington and go to the Polyclinic there. My Internist tried to get me off Prednisone too fast, but the Rhumitologist has really been great, and is always very receptive of new knowledge I bring in from this incredible gift of a web site . Have just had 25 over for Caroling on Sunday- Have been slowly preparing for last three weeks decorating and planning(I do a huge Christmas Village dept 56 every year.) Started preparing food 3 days before. Everyone brings something and we have a super time.I was a wreck for next day and a half, but oh, so much fun. So, you all, there is light at the end of this pain tunnel. Do not dispair❗️God Bless you ALL🎄

  • This is a lovely positive post. Thank you for posting it. You have however responded to posts that are 4 months old. I hope nobody misses it therefore. It kind of deserves a thread of its own.Your progress and attitude are inspiring. Have a wonderful holiday season. Sounds as if your dragon is receding. I hope that is the case. No use suggesting that you take it easy I suppose, no use at all. Bless you!

  • Yes - just to add to SJ's post, please do start a new thread with this great post.

  • I don't know where doctors get the idea that AA helps body absorb calcium. I've looked this up every time I hear someone say this and I've never been able to find a reference to any research saying this. In fact your calcium and D levels need to be healthy before even starting bisphosphonates. What AA does is prevent the bone cells called osteoclasts from removing old bone. This is why AA and its ilk should only be taken for a couple of years, if at all, as otherwise the new bone is being built on an increasingly older and more brittle matrix.

  • Jane, you are such a good example to us all. Well done on all counts! I hope you enjoyed the second set of celebrations at the weekend.

  • I spent the second half of the wedding holding a sleeping baby (Rafe) littlest grandson, with a sleeping toddler ( other grandson Theo in the pram beside me. I found a quiet corner on a sofa. I looked the martyr but actually I was just feeling such love, it was nice. Parents ran off to dance like kids in a candy shop. This wedding had a live band "The Feeling,"Dodgems cars, and a magic mirror that took your photo. My husband drank for both of us ha ha and I saw my shy son really going for it on the dance floor. I got through thanks to everybody who advised and supported on here. It's having the courage to shape a thing to your own capabilities.

  • What a lovely picture you paint. I'm so glad you all enjoyed it in your own ways and no ambulance required!! How those little ones sleep through live music - a lost art!

  • How lovely for you. You focused on all the good things in your life and spent time with your family. Staying positive is a great healer of the mind body and soul.

  • And you were obviously meant to be there - allowing great pleasure for other people while indulging in a baby cuddle...

  • Your GP obviously can't read a dexascan report. You shouldn't give bisphosphonates to patients with a normal BD level.

    I do hope you are going to ask her for her justification...

  • That is such good news! Bone density is so important and I hate to hear that anyone on prednisone has to argue the point of obtaining a dexascan. Keep up the good work!

    Best ~

    S

  • Good for you! When I demanded a DEXA before even considering AA I was made to feel rather demanding in the circumstances. Makes you wonder what makes them tick.

  • The doctors are not trained in preventative medicine, other than vaccinations, I think. Mostly they react to conditions by offering medicine or surgery.

  • It IS in the BSR guidelines for PMR/GCA you know. Yet another example of guidelines being for ignoring...

  • PMRpro, Are you saying the dexascan is in the BSR guidelines or just taking the AA?

  • The dexascan - to assess whether the calcium plus vit D supplement is sufficient for this particular patient or whether AA might be suggested. Unfortunately these rather out of date guidelines assume that if you are 65 you will have low bone density - which in this day and age is a piece of nonsense - so suggest the dexascan is not required.

  • Me too! But I insisted on a dexa scan after chucking my AA tablets with huge resistance from my doc. Found out my results were normal so I'm a happy bunny! I see another GP now!

  • This gives me the support to question why I am on it? My Dexa scan was normal but I am also on HRT. I do have degenerative OA though so that could the difference or the GP is on autopilot and just prescribed what he thought might help?

  • Thats brilliant sj. I am waiting for scan having taken 5 doses of AA in 12 months and then refusing to take anymore because of side effects. Kept trying to take when pressured but finally after seeing responses about AA here. Hoping I am in same position afterwards.

  • Here's another sufferer with a GP who insisted AA was necessary. I, too, was made to feel that I had to work hard to justify why I wanted a dexa scan; and even after the very good for my age results were received, my GP still wanted me to take AA! It's hard to understand what's going on here!

    Sounds like you had a lovely time at the wedding SJ - isn't it so often the case that those experiences we dread often turn out to be great, once we manage to grasp the nettle! It's great when our loved ones can recognise and accept that, with this debilitating illness we live with, we have to be able to do things on our own terms.

  • Good result! Hopefully this will encourage others to pursue dexascan even if GP is not in favour. I find the broken record technique sometimes works- I.e just to keep repeating what you would like until they get fed up of you. Or alternatively I suppose change your GP. I was surprised though that they offered you another dexascan in a year's time- which is good. I thought they often would not give them so often and the usual time frame was once every two years.

  • You are right about the time frame Jackoh and unless I agitate I bet I won't be offered one then either!

  • Very much depends on the local unit and who approves the scans. In Durham it was 2 years - and not a week sooner - and had to be approved by one of the hospital rheumies. There isn't a lot of point having them too often - the changes are slow so you need a decent gap for there to be enough change to see.

  • I was rx'd AA too when first diagnosed with PMR. I took the first pill on New Year's Day and spent the entire day vomiting. I had a severe allergic reaction. Devine intervention if you ask me!

  • Even if T scores are a bit borderline, I would prefer to be advised on lifestyle changes to improve bone density, ie improved diet and excercise before resorting to more drugs like AA. Having been on it in the early days of my PMR trip, I now know when to say NO (ever so politely of course)! BTW, having just had a tooth extracted in my local NHS hospital since my dentist was a bit concerned over medication, I learnt from the NHS surgeon that the detrimental effects that AA can have on the bones should be minimal 2 1/2 years after stopping treatment. Luckily, I stopped AA back in 2007 after 2 years.

  • That's great Jane...I'm hoping for a similar result when I eventually get the results of my Dexa scan!! Keep ringing, keep getting told it's not been reported on!! But no news is good news I suppose so I'll wait for my next rheumy appointment! :-)

  • Hi Sheffield Jane, I too was told my bone scan was so good I would never have to take calcium supplements. I started on steroids in 2015 and am now tapering down from 60mg. In 2015 to present day I a. Now on 4mg.

    I have had very few calcium supplements throughout this time, as I have had continuing stomach problems and have stopped any meds deemed unnecessary. Good luck keep on smiling !

    Annie1001

  • Thanks Annie! Amazing taper! Well done. I take chewable Adcal - when I remember ( vit D and calcium) seem to get away with it.

  • I have just started on Alendronic acid 70mg. coincidentally I started getting very painful and burning sensations in both legs.

    I had previously had a bone scan.....unrelated to GCA and was told it was good. I am going to leave off for awhile to see if there are any changes. I am now tapered down to 5 mg of preds....still tired all the time and getting pains back in my head...but we will see.

    Hope everyone is as ok as can be...thanks for listening.

  • If you don't have bone density problems and have got to 5mg there is next to no reason for you being put on AA now. At this level the effects are small - most of the bone density loss is felt by experts to occur in the firs t 3 months or so of pred, especially at high doses.

    That is shoving the door shut after the horse has been taken for a hack, not even bolted. I wouldn't be taking AA at this point without some VERY convincing reasoning.

  • Thank you PMRpro

    That's what I thought too

  • Ditto ditto ditto to PMRPro's great advice. Re AA

    Don't let those symptoms get much worse before you consider returning to the dose of Pred you last felt good on.

  • Thank you Sheffieldjane.

    I appreciate your comments

  • hi sj

    I have scan on Friday in same place as you with Dr keel..i am hoping it goes as well as yours. I have been quite a hefty person and when I can move I do. fingers crossed the dreaded AA does not come up and then I can get adcal etc sorted and they can leave me alone..

  • Being of statuesque build is protective against osteoporosis!

  • yes. and I can confirm that yomping a heavyish body seems to keep legs strong pre PMR. it's the one reason why I have some confidence scan will be ok.

  • Good luck Poopadoop!!!🍀

  • thank you!!

  • I'm glad I found this thread, very helpful! :-)

  • I'm glad too. Doc wanted to give me AA but I had read bits about it already here and this thread just backs it up Thanks everyone

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