New member -Dexa query

[Crosswordsolver]

Background

I was diagnosed with PMR in June 2024. Fortunate in having very supportive GP who quickly started me on 15 mg Predisolone which brought about dramatic improvement. Dose has been reduced to 14 mg after 1 month. GP plan is to reduce by about 1mg a month, depending on monthly blood test results and follow up consultation with me about my symptoms. Aware of need for flexibility and to reduce more slowly as get to lower doses. Have not been referred to a rheumatologist but feel ok about that as all going well (so far!). Overall I feel relieved that symptoms are under control but a little anxious about what may be a long and rocky road ahead. This site has been a godsend in providing information.

Query

Have just had Dexa scan results appear in my NHS app. T score on spine and hips - 1.6 (Osteopenia). Await follow up discussion with GP as to whether to take Andronic Acid. I have tried to read up on this from your helpful FAQs but still feel a little confused by the complexity and amount of unknowns. Am particularly anxious about any impact on dental surgery as already have major dental phobia. I do have regular check ups and 3 monthly hygienist appointments but teeth not brilliant and even though all ok at present (had X ray), who knows what lies ahead?

I would be interested in members’ views as to whether the Dexa scan result is low enough to risk not taking AA. Blood test results showed low Vitamin D (now taking 1000 IU daily supplement). Calcium and Phosphate levels normal. Should I be taking a Calcium supplement? Also, any questions it would be useful to ask my GP.

Apologies for long post!

[DorsetLady PMRGCAuk volunteer]

Hi

You should have been prescribed at VitD/Calcium supplement by GP when prescribed Pred. But some also need extra VitD like you, others will be along with advice

Maybe have a look at this for general info,-

healthunlocked.com/pmrgcauk...

As your DEXA shows osteopenia, that doesn’t necessarily mean it will advance to osteoporosis.

There is oodles of information in the FAQs - under Bone Health heading - have a read.

[PMRpro Ambassador in reply to DorsetLady]

?doesn't necessaily mean???

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes thanks -have amended…

[Crosswordsolver in reply to DorsetLady]

Thank you, that's helpful.

[piglette]

I am quite happy to take VitD/Calcium, but there is no way I would take AA unless I was shown to have osteoporosis.

[Crosswordsolver in reply to piglette]

Could I ask what your main concerns are with AA?

[piglette in reply to Crosswordsolver]

There are certain precautions you need to take before starting AA. Dentists do not like treating people who are taking it, so it is a good idea to be certain you have a good dental check before you start. It is not something I would take unless it was proved to be necessary by my doctor and I had osteoporosis.

You can see the NHS advice sheet here nhs.uk/medicines/alendronic...

The side effects are at the end.

[Crosswordsolver in reply to piglette]

Thank you, that is helpful.

[PMRpro Ambassador]

That is a similar score to what I had and it was agreed I only needed calcium and vit D. After 15 years of pred they had only deteriorated slightly but I had a spinal x-ray that could indicate a compression fracture and for the first time I have had a bisphosphonate infusion. I had always said if anything indicated a need I would take something but then and only then.

I would delay any consideration of a bisphosphonate for now and see what happens with the next dexascan in a couple of years.

[Crosswordsolver in reply to PMRpro]

Thank you - that's helpful advice.

[piglette in reply to PMRpro]

The next Dexascan in a couple of years. Crosswordsolver lives in U.K.!!

[Bcol in reply to piglette]

I've had no problem with having one every two years.

[Crosswordsolver in reply to Bcol]

The radiologist has recommended another scan in 2 years on her report so am hopeful that will happen.

[piglette in reply to Bcol]

When I said ‘see you in two years’ the Dexascan lady said ‘oh no you won’t’ it is three years now.

[PMRpro Ambassador in reply to piglette]

Ah - but a UK that has a plan for the NHS now that doesn't involve selling it off but involving private options I suspect which is fine - it's what is used in our region of Italy and it works well.

[piglette in reply to PMRpro]

Sadly Labour say they are totally against any private options. We have got a system designed for the 1940s, then cobbled about. We need one good integrated computer system, better organisation and links between different health groups and take the government organisers out of the picture.

[Hidden]

You may find it helpful to your decision making re AA to run your DEXA results through the Sheffield fracture risk calculator.

frax.shef.ac.uk/FRAX/tool.a...

[Crosswordsolver in reply to Hidden]

I will do that, thank you.

[Sophiestree]

sounds like you have a good GP there. Personally with those results I wouldn't entertain AA but most certainly VitD and K2 and up your calcium intake with yoghurt, cheese etc. I'd be over the moon with those scores!

[Crosswordsolver in reply to Sophiestree]

Thanks! I do feel fortunate they are not higher, which does give me options. It is really helpful to get the perspectives of different members as it all feels a bit overwhelming at the moment, going from feeling reasonably fit and healthy to suddenly having a serious condition I had never even heard of before!

[DorsetLady PMRGCAuk volunteer in reply to Crosswordsolver]

Many of us have been there - you are definitely not alone in that.😏

[Washingup]

I would like to comment on my experience which may be of help. I was diagnosed in May 2022. My GP immediately put me on 20mg of prednisolone. I had the usual blood tests to confirm, but no mention of prevention for osteoporosis. I am in my seventies and wished my GP had done a dexa scan and put me on AA and Adcal as soon as I started on pred! He decided to put me on these drugs after I had been taking high doses of pred for at least a year. It wasn't until I started getting chronic pain caused through multiple fractures in my spine and pelvis that a dexa scan was done. This showed I had severe osteoporosis. My mother never had this condition so doctor confirmed pred was the cause. Hope this helps. Sorry I can't comment on your dexa results.

[Crosswordsolver in reply to Washingup]

Thank you for sharing your experiences, which are very sad, given that good advice from your GP at the start could have prevented a lot of suffering. I will weigh up the pros and cons carefully.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

You GP obviously didn't read any guidelines, they all recommend bone protection - and at your age there would have been no discussion about AA - on it! Sorry to hear this.

[Washingup in reply to DorsetLady]

Yes I've learned so much off this forum. I only wish I had been on this forum as soon as I was diagnosed and been able to gather the info on here in advance. My doctor blamed me for not tapering more quickly. I am now on 1.5 and hoping I don't get a flare on top of this pain I'm already in.

[marionofnorwich]

A friend of mine who was an osteoporosis physio specialist said that ostopaenia didn't justify Alendronic Acid which is quite a strong drug. Just something to bear in mind

[Crosswordsolver in reply to marionofnorwich]

Thank you, that's helpful to know.

[Christine2307]

I took Adcal and AA alongside the Pred because my previous Dexa scan results showed Osteopenia. I was on it for 2 years, and once I'd finished the Pred the doctor had a rescan and withdrew the AA as the new Dexa scan showed no Osteopenia and no Osteoporosis. I didn't have an side effects taking AA and fortunately needed nothing done at the dentist, but it was flagged with them, but I feel grateful for such a positive outcome. Even though I ache from day to day - I've not had to revert back to Pred

[Crosswordsolver in reply to Christine2307]

That's encouraging. Thank you for sharing.

[tangocharlie]

First of all it cheers me to hear that you seem to have an on the ball GP and you seem to be in good hands. Welcome to the PMR club you didn't want to join but I'm sure you will find this forum invaluable.

But secondly speaking as a long-term PMR sufferer (fortunately that is only a small number of us, for most people PMR does usually go away at some point after a few on average 3-5 years, though there is no way of knowing when) who has recently suffered catastrophic vertebral fractures let me add my two penn'orth. It would be irresponsponsible to dismiss any option, including AA at this stage. In my case, despite two successive DEXA scans showing my bones were supposedly in the normal range, the last one a few weeks ago, I am now crippled from these fractures which clearly means I do have osteoporosis, and would urge you to discuss all options with your GP and make yor own mind up. I would think that for now Adcal tablets of clcium and Vit D together with a good diet with plenty of calcium and protein is the best start and easiest option, and if you don't want to take Alendronic acid there are other possibilities down the line, such as annual Zoledronic infusions. Dentists are not against treating people on it but they will check your teeth are in good shape as if you have to have extractions there is a small risk of complications. I was adamant I didn't want to take AA but am now in a right mess. Even without the added complication of being on steroids, somethingg like 80% of women over 60 have osteoporosis or osteopenia (source = the ROS website).

I will be posting more about what I have learned about osteoporosis soon, as I have learned the hard way

[Crosswordsolver in reply to tangocharlie]

Thank you for your welcome and helpful comments. I am so sorry you are having such a difficult time and your experience is certainly making me reflect very carefully on my options. It has been very useful to hear about different members’ experiences before I discuss with my GP.

[tangocharlie in reply to Crosswordsolver]

Worth having a look at the ROS website. I eshewed AA thinking I was OK because I'm young and all my scans were fine but I should have done something else instead. Whichever way you decide, weigh up pros and cons make an informed decision

[Crosswordsolver in reply to tangocharlie]

I will try to do that, though sometimes life throws some curved balls we can’t predict doesn’t it. I do appreciate your time in responding. It makes such a difference to hear about people’s actual experiences rather than just look at generalised statistics.

[tangocharlie]

I'm just doing a load of research and drafting a post on osteoporosis, spinal fractures, how to avoid them etc. I noticed there is a talk on 7th Sept organised by the charity PMRGCAuk for Members only on the topic. I hope it mentions all the alternatives not just that we should should take Alendronic Acid as if that's the only option. Maybe annual infusions of Zoledronic acid would be more pallatable adn more effective? There's also a talk on stomach protection where I guess they will say we have to take Omeprazole but again I'm hoping the gastro enterologist runs through other options such as gastro enteric gel capsules to put your Pred in, Cimetidine etc

[Crosswordsolver in reply to tangocharlie]

Thank you for that information. There seems to be much need for further research and discussion.