Bone Scan advice

[Jigsawlass]

Hello all, just a quick query . I've been on pred since the beginning of March , currently 12.5mg. I'm on Alendronic Acid too. I have been on Letrozole since my Mastectomy in June 2019. I had a bone scan then which is standard when starting something like Letrozole as it increases osteoporosis risk. I was fine then so I'm not due for another one for 2 years when hopefully I will stop Letrozole . Should I request one now though because of the osteoporosis risk associated with steroids? Seeing my consultant mid/ end May hopefully. I saw him privately twice but will be seeing him on the NHS going forward .

[DorsetLady PMRGCAuk volunteer]

Certainly would be a sensible request….

[SnazzyD]

I’d say definitely because you need a baseline so you know what effect, if any, the steroids have later on. It’s handy to know for the future if you know if it was Pred that did any damage or not. Also, if you now have osteoporosis because of the Letrozole they will need to decide what to give you because of the added whammy of Pred. My example is at 42 I had my ovaries removed after a double mastectomy because I refused Letrozole after side-effects that made life unliveable. Fast forward to 2017 and GCA ahed 54 I refused to take any bone meds until I had a new baseline DEXA scan. Plus I was also found to have a very low vitamin D level which won’t have helped at all and likely to have been the case for years. Turned out I had lost 10% since the ovaries and surgically induced menopause over 17 years. At that point I was still osteopaenic, not yet in the zone of needing bone meds. When I had a repeat last year, so 4 years after starting on 60mg Pred, it looks like I’ve lost another 3%. Could be worse. Still not osteoporosis, but another course of Pred would probably be a problem. If I’d had the DEXA only last year they would have had no idea if it was the Pred wot done it or the hormone lack over years quite a big difference I’d say.

[PMRpro Ambassador]

It would be useful maybe - but you are on AA which is supposed to counteract the effect of the pred as well as the rest.

Pred doesn't inevitably lead to bone density reduction - after about 12 years on pred my bone density hadn't deteriorated any more than would have been expected for my age anyway. And I haven't taken any bone protection medications other than calcium and higher than usual vit D (4000 IU/day) - which I think is more important than the calcium

[Jigsawlass in reply to PMRpro]

Im currently on 2000 IU a day as my Vit D was low despite taking the recommended dose, which is obviously too low ! Consultant suggests I move to 1000 once this course of 2000 ends

[PMRpro Ambassador in reply to Jigsawlass]

I find that unless I take 4000 IU all year round my vit D level just slowly falls into the low range. And I live in northern Italy where, technically, we make vit D in skin all year round! But that depends on your skin factory still being efficient and at 60 we make a quarter that way as we did at 20 ...

[LozzaSandstrom]

Me too I am on 15mg and 12.5mg every other day to try and reduce - my doctor has told me I need to talk about bone density at my next phone appointment to review the medication - I have taken matters into my own hands and ordered some vitamins from holland and barratt along with magnesium as I am getting palpitations in the night so having blood pressure and ECG next week - sounds like you have other stuff going on = had going on so its obviously good to keep an eye on it - apparently it can be a side effect to long term steroids and I have been told as my taper is so gradual to expect to be on them for 2-4 years. Good luck

Lozza

[suenewberry]

good afternoon jigsaw felt the need to reply to this. Yes definately ask for a dexa scan it so helps to see what is happening to your bones. My experience is 3 wedge fractures L1 T12 and T8. which followed a period of inactivity waiting for hips to be replaced. My readings were -1.00 so osteopena. I no longer take steriods and my last reading was back up to normal and recommended that no more bisophate infusions necessary. I was over the moon to get the bones density back up by taking supplements to help strenthen the bones. I wish you well on your journey.

[PMRpro Ambassador in reply to suenewberry]

Have to point out that a t-score of -1.0 is the borderline between normal and osteopenia

[suenewberry in reply to PMRpro]

Thank you, which is why I was amazed to get fractures.

[PMRpro Ambassador in reply to suenewberry]

Is there any sign of osteoarthritis in your spine? That can give falsely high density readings. But it is also the case that bone density isn't the only reason for fractures - people with apparently good bone density develop fractures and people with low bone density don't necessarily do so. But you wouldn't know that listening to some doctors!!!

[suenewberry in reply to PMRpro]

Thank you so much for your reply. Yes I have osteoarthritus in my spine and I know it can give a false reading as the bone is thicker. I am praying that this time they are correct and I do not have any more fractures as they are very painful.

[PMRpro Ambassador in reply to suenewberry]

Not had one myself - don't want one! - but OH fell and fractured L7 (or thereabouts) and that really was life-changing for him.

[Amkoffee]

I don't agree with those that suggest it. You've had a baseline already. However I would suggest having it checked a year after you started pred. I had one and was told I just had osteopenia and since I was already on calcium there didn't seem to be any reason to suspect anything else. Not 2 months later I started breaking bones. A total of 10 bones, 7 in my back alone. It because of this, I don't trust dexiscans any more. My rheumatologist insists I get still...

[suenewberry]

Gosh. Its amazing what you learn on this site. Thank you for replying. Going off to look it up. Kind Regards Sue

[suenewberry]

My surgery was both sides of the spine L5 to L4. It was successful for a short while and took away the muscle problem in my lower legs for a while. I felt looking back that there was more of a problem which has gradually got worse and I cannot walk without a rolator which at least gets me from A to B. The next stage is a pain block on L5. I think that operations are the last thing they turn to unless abolutely necessary.

It is a difficult decision to make, when there are risks involved. A friend had the op last October and is finally walking free from pain. It has taken a 6 month recovery programme but she is getting there. I wish you well on your decision and hope you are free from pain soon. Regards Sue

[Hidden]

Hi Jigsawlass, senior DXA technician here. I don't know where you're based but here in my neck of the woods (Northern England, UK) we would not re-scan within 2 years as changes in bone density are slow and we wouldn't see anything of clinical value within this time that would change treatment advice

[Jigsawlass in reply to Hidden]

Hiya, it's 3 years since my Dexa scan prior to starting a 5 year course of Letrozole. Dexa scan booked for mid -July, it will be interesting to see the results. I'm in Kingston upon Thames

[Hidden in reply to Jigsawlass]

That's good you are booked in for another scan. Dexa centres work to locally and national agreed criteria for acceptance of referrals for example, we re-scan every 2 years as long as a person remains on letrozole. This is dependant on GP's referring their patients back to us. Unfortunately, given the current crisis in primary healthcare i see a lot of people who should have been referred back but have slipped through the net

[PMRpro Ambassador in reply to Hidden]

I know that changes in bone density under normal conditions are slow and that informs the 2 year spacing (if you are lucky) - but there appear to be patients where bone density changes are much faster when they are on steroids, possibly also influenced by other drugs such as PPIs. Has that ever been looked at do you know?

[Hidden in reply to PMRpro]

Hi PMRpro,

The evidence for PPIs influence on bone density alone isn't strong enough to warrant DXA scanning, I don't know of any other centre that would scan for this as a stand alone risk factor (we'd be scanning most of the population!)

The nuances with risk factors come into play upon reporting the results of the scan and national guidelines assist in making treatment descisions. Everyone is different when reporting a person's scan, there are multiple factors that come into play- age, sex, history of low trauma fractures, current medication, medical conditions, family history of osteoporisis, parental hip fracture, lifestyle factors.... steroids too ...intermittent short courses over 12 months or long term maintainance daily dose? How high is the dose? These factors are important when reporting results.

But in short, we know oral steroids have a detrimental effect on bone density and we scan at 2 year intervals for oral steroid use. Taking a PPI alongside steroids wouldn't change the advice on treatment for osteoporosis and wouldn't change the scanning interval.

[PMRpro Ambassador in reply to Hidden]

I've been on steroids for 13 years - and at my last DEXA scan the change in bone density over 11+ years was no more than would have been expected at my age (nearly 70) and still firmly in the "no action required" range. My interest was more whether the combination of pred and PPI increased the risk. I've never taken either a PPI or a bisphosphonate.

[Hidden in reply to PMRpro]

There has been a couple of new studies on whether combined oral steroid and PPI use increases fracture risk for people with rheumatoid arthritis, but non regarding the general population or for people with PMR as far as I'm aware.

[PMRpro Ambassador in reply to Hidden]

Doubt it would be much different - though we are on a lot more pred for a lot longer usually. It isn't routinely used for RA is it.

[Hidden in reply to PMRpro]

I'd say around 8 out of 10 people i see with RA are using pred. Most people tend to 'yo-yo' with dosage. Start high and reduce down, then go back up, down -the aim being getting the dose as low as possible whilst managing symptoms, some folks find a maintainance dose that's pretty low and works for them. Other sufferers find methotrexate works for them

[PMRpro Ambassador in reply to Hidden]

As many as that? I thought they mainly used MTX because of the DMARD aspect to minimise erosion of the joints. The Lodotra/Rayos formulation of pred was developed for RA patients to minimise morning stiffness though, which it does brilliantly for PMR.

That is of course what you are meant to do with long term pred, titrate the dose, but the doctors just don't understand how to go about it. They go at it hell for leather, overshoot, go back up, repeat the error and get the patient into a yoyo pattern and that makes it worse and worse. Prof Mackie said in a meeting the other week that surely when it failed the first time the doctor would change the approach as she does. I just laughed at her! She was horrified. At the lack of learning by experience, not me laughing at her

[Hidden in reply to PMRpro]

Indeed! I roll my eyes inwardly everytime i come across this. As patients we really are at the mercy of our postcode (for treatment) and just how good your GP is. The general jist in my area seems to be yoyo pred. Thank you PMRpro, i have enjoyed our chat. Feel free to message any time!

😀