should I ask for DXA scan?

[tweety_pie]

Had a temporal biopsy a week ago, awaiting results. Pre-op ultrasound to mark artery pathway showed some inflammation. Putting that with my symptoms ( and now on 60mg Pred daily since raised CPR/ ESR results 8 days ago), am expecting a positive GCA result. But who knows? Might I wait several weeks for results? And, in this limbo, should I be in touch with my GP to ask for DXA scan? Or will it only be offered if GCA found? Am I being impatient? Diagnosed with PMR in late Jan and GCA symptoms started after GP reduced 15 to 12.5mg Pred after 3 weeks. Grateful for advice

[SheffieldJane]

I would request a DEXA scan. It is the steroids that can negatively impact on bone density. Good luck with everything!

[tweety_pie in reply to SheffieldJane]

Thank you…I will. To date not having great experience with rheumotology or GP’s, latter well-meaning but not very informed. So guess I need to ‘inform’ t

[PMRpro Ambassador]

Well I would request a dexascan - whether you will get one on the NHS is another question!! They will probably insist you will NEED a bisphosphonate anyway so it isn't worth it.

[tweety_pie in reply to PMRpro]

I’ll need to look that one up…thank you … and forewarned as they say

[PMRpro Ambassador in reply to tweety_pie]

Our argument is that, whatever your age,, you need the dexa to know if you really need the bisphosphonate drug!

[Suffererc in reply to PMRpro]

and if you are taking it to know if it is doing any good. Or is that wrong

[PMRpro Ambassador in reply to Suffererc]

Yes - works both ways: if you don't take a bisphosphonate (I don't) I need to know it is still OK. If you do - you need to know it is working. I knew a lady in her 80s, still playing tennis god love her, who suddenly developed a few spinal fractures and needed kyphoplasty to stop them collapsing. She said to her specialist spinal surgeon "But what about all that alendronic acid I took?". "Waste of time for you" he said.

[Angelabody in reply to PMRpro]

l was diagnosed February 2022 due to classic symptoms of GCA by my daughter( doctor) confirmed by my GP and Rheumatologist. Started immediately on Steroids 40 mgms so I have not had a biopsy. Now down to 6.5 mgms. Not taking A A even though they are prescribed but taking Calcium and vit D. Bone scan at 10 months ok but having trouble reducing further that 6.5 due to headaches when I do and worried. If you’re not taking AA like me get a bone scan to check you are doing it right

[PMRpro Ambassador in reply to Angelabody]

Not sure who you meant this for - you have replied to me, If it was for tweetypie they will be notified, If it was for anyone else, maybe you should point it out to them

[SnazzyD]

Hello, first of all a negative biopsy doesn’t mean no GCA because it may just mean the affected areas aren’t in the particular piece of artery removed as there are other arteries that can be affected. Mine was negative after being in mostly 60mg for 8 days but I was still treated for GCA because I responded well and quickly to Pred. My symptoms stayed away because I was kept on 40mg for 6 weeks before any reduction.

I had my DEXA (because I demanded it) about 3 months in and was told that it didn’t need to be done immediately I started Pred. The scan showed I had lost about 10% bone mass since it was done 12 years previously (ovary removal and low vitD). I had osteopaenia but didn’t need meds, just supplements. After 3.5years of Pred I had lost a further 3-3.5%. Had I had the scan just at the end it would have looked like the Pred made me lose 13-14% when it hadn’t. This is relevant if I ever need to have Pred again.

[tweety_pie in reply to SnazzyD]

After previous ultrasound and bloods showing nothing but leaving me with plenty of symptoms of GCA, I would not be surprised to get a negative result. Thanks for letting me know your experience and confirming that an early bone scan worthwhile, if available

[SnazzyD in reply to tweety_pie]

My bloods didn’t show anything either.

[DorsetLady PMRGCAuk volunteer]

Request one, whether it's forthcoming may be a different matter ..

[tweety_pie in reply to DorsetLady]

nothing ventured..

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

True- and when they insist on a bisphosphonate say you want a DEXA scan first to see if it’s necessary..

[Pippah45]

I requested one and got it about two months into pred. I didn't like the look of AA or something else offered and opted for Boron myself. Three years on my Dexa last week came back as normal so I am well chuffed. I am 77. I also Rebound every day very gently and eat plenty of dairy. They do that exercise with astronauts as weightlessness contributes to osteoporosis.

[tweety_pie in reply to Pippah45]

more to explore….pleased for you bones holding up. That’s most reassuring

[Pippah45 in reply to tweety_pie]

My Dexas were both NHS. The Boron suggested by a friend who had been a senior nurse and very knowledgeable about Pred. I take 30 mg of Boron daily which is considered high in UK but in the US it is quite normal. My Rheumy hadn't heard of it but I am more than happy with my results.

[Cfmad298601]

I started on pred about 6 months ago for GCA. Nothing has ever been mentioned about a dexa scan. They have started me on Alendronic acid and methotrexate, neither of which I’m convinced I need yet? I have been tapering very slowly and so far without any major issues.

I had a visit with the Rheumy last week and asked about a dexa scan, as I hadn’t started taking the AA yet, asking that surely it should be taken before to see if I actually needed the AA and also to get a baseline to measure any changes. It was all seemingly brushed aside simply saying that I would have one in “about” a year or so to check bone density.

I’m considering getting one done privately, the NHS seems to just do things textbook so far.

[tweety_pie in reply to Cfmad298601]

I think I would do the same to get a baseline, knowing if anything to concern early on and down the line. Will see how GP reacts to request...!

[moonieboy9358]

I had not had a baseline bone density scan. The doctors did not mention it to me. I was on steroids and one day. I just had a hard sneeze. I fractured five vertebrae. I was doing weight bearing exercises and taking calcium supplements. I would ask for one to be done

[tweety_pie]

What a dreadful experience. I'm so sorry. Will certainly be asking for a baseline scan going forward

[Nextoneplease]

your GP might be able / willing to arrange it.

I asked for x rays of my shoulder and wrist about three weekS ago and have already had these. The DEXA scan I requested at the same time is on 22 April. So it can be done if you’re lucky!

So good luck ☘️xx