PMRGCAuk
6,905 members10,884 posts

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!

54 Replies
oldestnewest

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.☀️

2 likes
Reply

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!

4 likes
Reply

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.

6 likes
Reply

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🎄

Reply

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!

Reply

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

Reply

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.

6 likes
Reply

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.

2 likes
Reply

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.

9 likes
Reply

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!

Reply

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.

Reply

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

Reply

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...

2 likes
Reply

Hi there - I have had my (very) long awaited DEXA scan, which was requested by my thoracic consultant. I have what he has called 'a profound curvature of the spine', scoliosis. The curvature is from side to side and is an 's' shape. You very kindly sent me details of what figures I should be looking for as normal. I have been bombarded with doctors telling me that I should take the dreaded AA, but I am very reluctant to do so. The results of the scan did not really help much in my decision as my hip and some other bone score was good at -1, but my spine was not at 3.3. This is obviously not good. My dilemma is as it is just my spine that is affected, is this because I have scoliosis and is it normal for bone density in it to be low with this condition! I know I won't get an honest answer from the doctors - even the letter sent from the thoracic consultant to my doctor didn't mention the fact that other bone scores were normal - naughty or what? I know that you will give me an unbiased opinion. All the best DL

Reply

Try this as a new post Dobermanlover so that people spot it. This is quite an old thread. I do not have the knowledge to answer your specific query. There may well be a healthunlocked for scoliosis and curvature of thespine.

Reply

Hi SJ - it was a question directed at me so its fine.

Reply

It popped into my box. Glad you’re here!

Reply

Good to hear from you!

ncbi.nlm.nih.gov/pmc/articl...

suggests that scoliosis can lead to reduced spinal bone density and from an early age.

Something at the back of my mind tells me that some medications are better than others for spinal osteoporosis - so I think you will need to speak to a spinal expert to know whether AA will work as well or better to raise bone density in the spine compared with the other bones which arguably don't need improvement.

This study

ncbi.nlm.nih.gov/pmc/articl...

isn't about scoliosis but spinal fusion results in patients with spinal disorders. However, it suggests that alendronate is not ideal for improving bone density - 2 studies showed lower bone density! Hardly useful! The studies with teriparatide (Forteo) were the best results in this context and it seems to work quickly on the spine.

If it were me - I'd like to think they'd let me have Forteo on the basis of what I found with a quick google. There are other papers that seem to suggest Forteo is good.

Are they intending doing anything about the scoliosis? I wonder what "profound" means - did he mention a degree figure?

Reply

I was in the middle of replying to you when my computer told me it was shutting down - so here goes again!

Many thanks for your reply, I knew I could rely on you - but that doesn't mean that I take you for granted, just respect your opinion.

I should have explained that I have known about my scoliosis since I was first told I had it when I was 14 year's old, so it's been around for a long time as I am now too fast approaching 76 years!

I was sent to the thoracic consultant to investigate my shortness of breath, he showed me my x-rays over the past few years and they did not show a very pretty sight. My right lung is pressed all down my right side by my spine and my left lung sits on top of my spine on the other side. Because of my age, they cannot do anything about the curvature. I asked about exercises (not the first time), just another review in 6 month's time.

Anyway, thank you for the links - I will certainly look them up, and also investigate your suggestion of Forteo. Many, many thanks once again.

Reply

My pleasure - was nothing ever done about the scoliosis before? Or was there said to be nothing to be done? I do hope it gets no worse.

Reply

When it was first diagnosed, they said that an operation was available, but that there was only a 50% chance of it working and a very high risk of paralysis, not risks I was willing to take then. Since then it has been ignored really. about 15 year's ago I was starting to have difficulty breathing and it was mentioned then, but when I asked all I had was a shrug. I feel rather that doctor's have let me down, but then it should have been my responsibility to make more fuss. Ah well. hindsight and all that!

Reply

Yes, 20/20 vision at the time would be helpful. Things would have changed a lot in that time so your doctors should have been a bit more proactive 15 years ago. And why should it be up to us to know more than out doctors? Because that is what it amounts to isn't it?

Reply

It certainly seems that we have to make a lot of noise to get things done, shouldn't be that way. Better go and see what my better half is doing, he is busy outside! Many thanks again. Will update you after my next visit to the doctor on the 26th (appointment made 2 weeks ago!)

Reply

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

2 likes
Reply

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.

3 likes
Reply

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

4 likes
Reply

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

2 likes
Reply

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

Reply

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.

Reply

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!

Reply

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?

Reply

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.

1 like
Reply

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.

2 likes
Reply

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.

Reply

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

1 like
Reply

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.

Reply

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!

1 like
Reply

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.

2 likes
Reply

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! :-)

Reply

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

Reply

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

Reply

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.

Reply

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.

Reply

Thank you PMRpro

That's what I thought too

Reply

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.

Reply

Thank you Sheffieldjane.

I appreciate your comments

Reply

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..

Reply

Being of statuesque build is protective against osteoporosis!

1 like
Reply

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.

1 like
Reply

Good luck Poopadoop!!!🍀

Reply

thank you!!

Reply

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

1 like
Reply

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

1 like
Reply

I have just had the bone scan so hope the result is like yours, well done. I too am under pressure to take the dreaded AA tablet but refuse. I take the vitamin D tablet twice daily and feel fine wth that only on 5 mg of pred so fingers crossed. Cheers from Perkey 😃

Reply

You may also like...