A couple of months ago I wrote a post asking why my GP was trying to persuade me to take Omeprazole and Alendronic Acid before knowing if I needed them.
I resisted and took neither. I have had no stomach problems and since yesterday, when I saw my Dexa scan results, feel vindicated in my decision.
My Dexa scan results were:
T-scores hips 0.6 and 0.7, spine 1.3
Z-scores hips 1.6 and 1.2, spine 3.8
I put these scores into chatgpt and it said:
“no osteopenia or osteoporosis: all your T-scores are well above -1.0”.
“excellent bone health: your Z-scores suggest you have above average bone density for your demographic”.
It also says “exceptional bone density in your lumbar spine”.
My point is that if I had followed the GPs (very forceful) recommendations I would by now have taken 8 pills of AA unnecessarily which (according to given side effects) may have caused digestive problems which then would have necessitated the taking of Omeprazole.
Feeling quite annoyed!!! Why don’t they just wait??
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CocoaChanel
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Probably because it’s recommended in the guidelines-and it also states that over 65 then a DEXA scan not required. Some pick and choose what they read.
Dodged a bullet is not a phrase I'd use having suffered catastrophic life-changing spinal fractures despite normal DEXA scores. Do you mean in not taking AA or not having had fractures so far? Either way never assume you're going to be OK, it's a matter of weighing up risks, getting all the info you can about available options and then making a personal choice about what to do. I've only just turned 64 so was 62 when my fractures happened. None of us have a crystal ball. I never thought it would happen to me. Keeeeeep dancing .....
Great ! I'm waiting for my own dexa scan results... I was 65 at pmr diagnosis last year and GP didnt suggest AA just calci-d .... but now I'm properly 'over 65' they are suggesting it ..... hope OK but worried as my mother broke a few bones in later years ...
I think there’s no doubt that’s correct. When I was given the results over the phone (after I asked for them) I remarked that I had been waiting 4 weeks when I was expecting to hear within 2 weeks. I was told that they normally don’t contact you unless there is cause for concern so I would not have been contacted as my results were normal.
Therefore, had any of these scores, other than T-score hips, been negative they would have contacted me before now (maybe 😵💫)
Then actually that may not be a simple healthy bone density. particularly at your age. The presence of osteoarthritis in the area being measured makes the bone appear denser than if there were no OA present. Usually that is mentioned in the write-up of the report - but won't appear in the simple numbers.
Yes, you may have exceptionally dense bones for some reason - were you on HRT for a long time for example? But it is possible those a falsely elevated result due to other factors.
The rest of this article is also interesting - and includes me. My dexascan results were fine for all 13 years I had been on pred - but a year ago my rheumy did a spinal x-ray and the radiographer identified a compression fracture. One is shown in the article and the paragraph immediately below the image gives the rather sobering figures to go with it. My dexascan done a few weeks later was still fine. It is the quality of the bone that matters and I am about to have my second bisphosphonate infusion. I had had severe back muscle spasms for a couple of years previous to the x-ray, but the previous spinal x-ray hadn't shown anything. Since the first infusion, the back pain has improved markedly. Luckily I have a very conscientious rheumy.
PS - your result from chatgpt shows the lack of nuance AI generates. The numbers are not the whole story - and needed a human check to say, hang on a minute.
🤣🤣🤣 good luck with that - they obviously don’t have any intention of taking this any further. I was also told that unless I have a problem that needs an appointment I shouldn’t expect to hear from the surgery until September for my annual checkup. I’ve lived here 8 years and this is the first I’ve heard of an annual checkup.
Looking at my lumbar spine scores and thinking about what you are saying about OA, I think the very high spine scores almost certainly are due to OA - due to injury (windsurfing in 1980s) I have some cartilage reduction at bottom of my spine. However, hips were not affected so those scores are likely to be correct?
My doctor went on and on about AA even though my results were even better than yours!! Probably at least two years of fighting. The only reason he stopped nagging me it seems is because a rheumatologist said I did not need AA.
I needed the Lanzeprole at higher Pred doses for my stomach anyway ( regardless of AA) so the GP might have been thinking about that also. Came off it when got to 5mg Pred as per the prescription from rheumy.
I’m in Ireland and they gave me a Dexa when first diagnosed which was normal but their protocol was still to prescribe AA for first year while I was on higher doses. It was a faff to take but I had no major side effects from it and I’ve seen it work well for an older friend of mine with osteoporosis so feel ok to have used it.
If you can have another DEXA in say a years time (I went private) I would just to keep an eye on your scores.
As part of a longitudinal study run by Bristol University I was having regular scans and did have well above average bone density. I decided to check my bone density a year after taking Pred (maximum level was 15mg) and was shocked to find I was now borderline osteoporosis. I am one of the unlucky ones there and I’m guessing that’s why GP’s prescribe Alendronic acid as a precaution. Good luck with it all
Thanks for sharing - that must have been a shock - I’ve read pred has a big effect during first 6 months. During that year did you take supplements eg. Ca, D3, K2? My GP said next dexa scan will be 2 years from now so I will maybe follow your lead and get a private one in 6 months.
I do. I take K2 and vit D. Prunes too as they are very good and also take a top up of magnesium. My GP gave me a diet sheet for calcium right from the beginning and after consultation with them we agreed my diet has enough calcium in it. Especially since taking Alendronic acid this last year as a result of the DEXA scan results. When I am on a low enough level of Pred I can stop taking AA the consultant notes on my scan says. Looking forward to it.
For me, I don’t think it was a lack of nutrients, more one of the unfortunate side effects of Pred that happen in some people.
Re the Omeprazole you have several options as alternatives. The risk, as explained in a video in the charity's Zoom AGM by a gastro consultant, comes from the repeated use of a dose of Pred over about 10mg which can cause stomach bleeds. Under 10mg is probably OK. You can take your Pred with food, take another type of protector eg Cimetidine, take enteric Pred (though it's not easy to get hold of) or put your Pred in enteric capsules such as from Capsuline. Long-term use of Omeprazole can also lead to problems so many of us choose not to take it and take alternative measures
“When I am on a low enough level of Pred I can stop taking AA the consultant notes on my scan says.”
Does anyone know what level of Pred warrants stopping taking AA? I’ve never actually taken it but my last Dexa scan showed that I had only just gone into the Ostopenia range after 6 years taking Pred. I’m only taking 2mg daily, is this a low enough dose to not need AA?
I can only give you what my own scan notes say which is when I reach 5mg or below I no longer need to take AA as a preventative measure. I’m borderline - I think if I was fully in the osteoporosis range my notes would probably have a different message.
Seems to depend on the doctor - I don't think there is any evidence it isn't required at a given dose. I never took it and my bone density barely changed over 13 years, a lot of which were above 10mg.
I stopped mine when I was around that dose -had been taking it for just under 4 years (GCA & early hysterectomy which is why I took it) - DEXA scan couple of years later showed no issues-but report suggested staying on VitD/Ca supplement. Did that -and still do.
You’re absolutely right! we really need to stay abreast of these things and make our own informed decisions. Since my lengthy (& tortuous) period of getting my PMR diagnosed in 2020, and my journey with it, my opinion on most GPs isn’t great anymore. I did eventually get a lovely one who did actually listen and she allowed me to decide my ongoing pred levels & reduction schedule - assisted me in having necessary back up supplies in case of a sudden flare or the possibility of GCA while travelling, and was generally supportive with regular blood tests etc. She also didn’t argue (much) when I said I didn’t want the alendronic acid, or any of the other things they automatically dole out Willy nilly the minute you are prescribed pred. . Unfortunately she’s not the ‘norm’ is she ? ☹️.
Certainly isn't!!! The GP who couldn't diagnose PMR in the UK was pretty useless. Mine here is OK as far as it goes but she was rheumatology trained before going into general practice. But now I have a wonderful rheumy - world renowned expert in PMR!!!
You’re right about the automatic doling out of pills. I had a scare a few years ago which turned out to be an allergic reaction. If I had blindly accepted the GP’s prescriptions I would probably now be on statins and beta blockers as well AA and Omeprazole. Good you found someone you have confidence in eventually. Thank goodness for the internet, it really helps me cope.
I'm happy for you. Mine is not the case. I could not take AA due to acid reflux. I don't know what my Bdx scores were, but my now defunct rheumy said it was osteopenia and then waffled a year later when I turned up at the ER in excruciating pain. Turned out I had two compression fractures. She said, she said osteoporosis. Anyway a year late, because of her misdiagnosis, I went for my first Zoledronic Infusion. During that year I sustained 8 more fractures. Yes for a total of 10. Now I am dealing with severe osteoporosis and a possible atypical femural fracture....or bursitis. I now have to go for an actual bone scan to rule out the fracture. Also fibromyalgia. I'm 74. Was a healthy 71.5 yo when the PMR began. Started Pred in Jan 2022. I wish my scores were as good as yours and I'm currently dodging a different bullet. The term which I hate is "it is what it is". I hope the PMR will go into remission after 4 years. 🤞
I had a similar experience. I took Alendronic Acid weekly for 8 months before reading that this drug is not suitable for patients with hiatus hernia - ie me! I mentioned this to my gp when I told her I had stopped taking the AA (she was not the gp who made my initial PMR diagnosis and prescription). I stopped taking AA because I was experiencing stomach pain. I suggested I have a DEXA scan to assess my bone health. DEXA came back good. No checking of records or asking if I had reflux problems/hiatus hernia had taken place. No DEXA to assess prescribing for bone health. Now just taking Calci-d with fingers crossed. Tapering to 4.5 mg Pred.
Me too, GP just had me in to discuss (well actually start me on) AA, Lucky I had been researching it since he mentioned it recently so I think I was well prepared and correct to say "no thank you" at the moment, I to have HH and take daily anti acid meds for both that and to protect the stomach from other drugs, I take Add-Cal and I'm quite fit and mobile with 2k hill forest walks with the dog 3x weekly. Anyway I was happy to go private for a DEXA to see what my baseline was first but he agreed to request one for me on NHS, I think just chasing one drug with another at the moment would just be heading down a slippery slope that I'd rather not be on at 70. I've been on Pred's since diagnosis almost exactly 24 months ago so I can see he is just following basic guidelines. I'm currently on 5.0 mg planing to go 4,3,2,1 at 90 day intervals ... fingers crossed.
The HH does mean you were quite right about the AA - my daughter is in endoscopy and waxes lyrical on that! BUT the dexascan is only part of the story and pred also affects the trabecular structure of bone which only shows on very fancy dexascanners - not the usual ones. That is probably more critical in terms of spinal compression fractures and the bone meds stabilise it. You REALLY don't want to experience spinal fractures.
I am in the same situation. I had DEXA scans on 13th Dec and was prescribed AA prior to the scans. I held off taking it and am still awaiting scan results which I will get when I see my consultant on 7th Feb. I agree and don't see the point of taking the AA unless absolutely necessary. Watch this space
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Dexa scan results / Osteopenia
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