Confused: After having a compressed... - Osteoporosis Support

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Daisi124 profile image
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After having a compressed fracture L2 six weeks ago without a reason I got a Dexa Scan my results are -2.7 thigh and -4.8 spine. My GP prescribed Alendronic Acid tabs and Accrete D3 and Calcium. He then changed his mind on the Accrete because the x-ray I had which discovered the L2 fracture said there was a possible kidney stone and told me not to take it. I have since read that AA will not work without sufficient calcium. To add to the problem I have been taking Lansoprasole for 23 years due to reflux and have since learned researching that this medicine can deplete calcium and actually cause osteoporosis so I am guessing I am short on calcium as it is. I have taken D3 for years 1000 iu a day and last blood test show my D3 level was 66 nmol, My doctor did not mention the Lansoprasole at all. So to recap I am taking a calcium deleting drug, taking AA and have no calcium supplement as my doctor was against it. I would like to come off Lansoprasole but am scared that it will make the AA side effects worse. I have taken one tablet without problem. Does anybody know if AA only damage the throat the morning you take it as I only have reflux in bed at night. This has all come as a big shock to me, I was normal one day, the next day I could not move out of bed just like that. I am very depressed my husband was diagnosed with terminal prostrate cancer at the begining of the year and now this! Any advice would be much appreciated. I am from the UK and have made an appointment to see a rheumatologist privately on Tuesday at quite an expense but unsure that if he suggests a different approach or adjusting my medication if the GP will take any notice or whether it will be a complete waste of money but at the moment I am so scared of breaking another vertebrae and not happy with the advice off my GP I cannot sit here mulling it all over and do nothing.

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Daisi124
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Met00 profile image
Met00

So sorry to hear just how much you've been going through Daisi. First I'd like to reassure you that it's possible (and in the UK recommended) to get calcium from diet rather than supplements. This is a simple but helpful calcium calculator: cgem.ed.ac.uk/research/rheu.... If you can't tolerate dairy, it's usually recommended to get fortified alternatives (eg oat milk), but they're fortified with calcium carbonate, so you'd need to talk to your doctor about whether that still counts as a supplement.

It's widely believed that Vitamin K2-MK7 is effective at helping send calcium to the bones, and some have also reported it clearing calcium deposits. Calcium can build up in the kidneys as it's flushed out of the body, but if it goes to your bones, that problem is less likely to occur. It's also worth bearing in mind that there are other reasons for kidney stones, not just calcium build-up.

You're correct that PPIs taken long-term can result in reduced calcium absorption leading to bone loss. Another way of improving calcium absorption would be to raise your blood Vitamin D level, as that plays a major role in the process. Some experts (including some consultants specialising in osteoporosis) recommend a blood level of at least 75 nmol/litre, some saying even higher than that. Bear in mind that "normal" blood level is between 50 and 150 nmol/litre. For Americans, that translates to a range of 20 - 60 ng/ml, and a minimum recommended level of 30 ng/ml.

If you do decide to come off lansoprazole, it's recommended to reduce the dose gradually (eg half dose daily for a while, then alternate days, or if you can't halve the dose, simply go to alternate days, as going "cold turkey" can actually drastically worsen reflux in the short term.

I hope your fracture doesn't take too long to heal. I know a few people who've fractured vertebrae but have gone on to resume a normal life, albeit with some modifications. Even those who've fractured, once it's healed, are usually able to do exercises to improve their bone health. One example is doing heel drops, where you stand on your toes, then drop down onto your heels. Once you've healed, you can do that very gently to start with and gradually and carefully increase the amount of impact. Also, something as simple as brisk walking, although it's unlikely to build bone, is good exercise for slowing decline. I'm not medically qualified, so am only reporting what I've learnt from others, so please do check out with an expert what would be appropriate for you.

If you're not already a member, you might also like to join the Bone Health forum on HealthUnlocked, as that's a UK site. I think it has more members than the US site, so you might get more responses there.

Daisi124 profile image
Daisi124 in reply to Met00

Thank you very much for your reply Met and the useful information. I did think my D level was a bit on the low side as in the uk the readings for normal are 51 - 250 but then it says that between 25 - 75 is insufficient (nmo/L) confusing! As I said mine is 66 so I from the above i guess it is a bit low, despite me having been taking 1000 ui supplement for years. I have written everything down I said in my OP for the visit to the specialist on Tuesday and will let you know what he says. I have just starting taking a K2 complex as I could not get a K2 on it's own it is K2, K1 and Vit D3 I am assuming that would be ok? I would have felt a lot better about things if it had not been for the kidney stone complication but I have book a private scan for that next week, I might as well get all the information I can done in one go, Thanks again for your quick reply.

Met00 profile image
Met00 in reply to Daisi124

I don't think it matters whether the K2 is standalone or combined with other supplements, but make sure it's K2-MK7 and that you're getting at least 90mcg. I think most of us aim to get around 180mcg. It's possible to buy K2-MK7 on its own though: for example Holland & Barrett do the Better You oral spray, though it is very expensive there. You can buy it in tablet and spray form from various websites (including Amazon of course) at a whole range of prices. Dolphin Fitness do a range of reputable brands. ZipVit do their own brand of it in tablet form, £5.99 for 90 x 100mcg. I'm sure if you asked on the Bone Health site, you could get recommendations of good makes. There's no official recommended amount, but in Australia they say 90-180. Are you planning to increase your Vitamin D? As a guide, it's reckoned that on average every 100iu of Vitamin D should increase your blood level by around 2.5nmol/litre, so you could double it to 2000iu and probably get a blood level of about 90nmol/litre. It's generally considered safe to take up to 4000iu daily.

I hope you get on OK with your private scan next week. Is that a private DEXA?

Daisi124 profile image
Daisi124 in reply to Met00

Thanks for all the info, I am going to look into it all now. Re the private scan no it is not Dexa, I already had Dexa and my readings were -2.7 thigh and -4.8 spine :( The private scan next week is about the possible kidney stone found on a normal x-ray which i had when I fractured my L2.

Met00 profile image
Met00 in reply to Daisi124

If you can afford it and there's a clinic near you, you might be interested in having a REMS bone density scan. REMS (uses ultrasound instead of x-ray) has been shown to be more reliable than DEXA due to being more fully automated so fewer possibilities for operator and/or interpretation error. Such a big discrepancy between your scores does raise questions about the accuracy of your results, although of course the fracture you sustained does on its own show that your bones aren't as strong as they could be. The REMS scan includes a 1/2 hour appointment with an orthopaedic consultant specialising in osteoporosis and spine health - the scan is done and the results given during the appointment. If you want to know more, have a look at their website: osteoscanuk.com/. They're based in the Midlands but hold clinics in various places around the country. I know lots of people (myself included) who've had a REMS scan and been very pleased with it - money well spent!

Kaarina profile image
Kaarina

I had a REMS scan recently as I thought my DEXA report was rubbish. It was £150 well spent in my opinion. I will be having another REMS scan in two years. I do not think I will bother with a DEXA again if another one is offered to me.

I am so grateful to Met00 who drew my attention to this type of scan. There are others here that have had them and as far as I am aware they found it to be of great help and more accurate than their DEXA report.

A DEXA scan is only as accurate as to how well the person makes sure you are lying in the correct position and how well trained the person is in writing DEXA reports.

Karana81 profile image
Karana81

I am sorry about your spine numbers, Daisi. I also had a mild compression fracture in my spine (thoracic area) in June due to an unknown reason. I want you to know that I just had an MRI and it has completely healed, so you can look forward to the same I am sure :-) Many responses referenced a REMS scan. Am I to understand that is something only available in the UK? My doctors here in the U.S. have never mentioned it.

Daisi124 profile image
Daisi124 in reply to Karana81

Hi Karana, thank you for yur reply. My spine numbers are depressing and I got little to no information from my GP, he just said you have severe Osteoperosis as though I should know all about it. I have an appointment to see a private Rheumatologist tomorrow to discuss everything I posted here in my OP. Regarding a REMS scan, I also have never heard of it until a member on here mentioned it, I am going to ask the specialist about it tomorrow. I am so glad your fracture healed up well and that it was only mild. I have no idea if my is mild or not, my GP just said I had a "crushed bone in my L2" I am just about to ring the surgery to ask for a copy of the X-ray so I can take it with me to see the Rheumatologist tomorrow. Keep well.

Mark_ABH profile image
Mark_ABH in reply to Karana81

REMS is approved for use in the U.S. but is not available in most places.

Met00 profile image
Met00 in reply to Mark_ABH

And the stupid thing is that REMS is more widely available in the UK than the US, but not officially recognised!!

Karana81 profile image
Karana81 in reply to Mark_ABH

Thank you for clarifying! It has never been offered to me and I am now working with a specialist at our medical school. I am going to ask her about it out of curiosity.

osteo2021 profile image
osteo2021 in reply to Karana81

I know of several places on the East Coast of the US (mid-Atlantic) that offer REMS. I believe there are also some locations on the West Coast. You can also contact Echolight the distributor to find other US locations. Happy to share their contact info and my experience with this type of scan if you are interested.

Karana81 profile image
Karana81 in reply to osteo2021

Sure! That would be great. I will probably be meeting with my doctor in the next month, so any additional information would be helpful. Thank you!

osteo2021 profile image
osteo2021 in reply to Karana81

If you search for REMS on this site you will find other people commenting on their experience with this type of scan versus DEXA. REMS showed my spine t scores more in keeping with my hip t scores and spine more dense (better score) than with DEXA. It appears that REMS may be better than DEXA at measuring spine bone density — particularly for “small boned” people. My understanding is that REMS works more like ultrasound without harmful X-rays of DEXA. Hope this helps.

Karana81 profile image
Karana81

I really do understand your distress. After a gap of four years my spine numbers went from -2.8 to -3.8. (Admittedly I waited too long to get a DEXA and I was not consistent at exercise or taking my vitamins during that time, but still it was a shock!) My nurse practitioner was so alarmed and she put me into a total panic and literally ruined a trip to Hawaii that my husband and I had planned for the next week. I was afraid to move because she had told me I could fracture my back getting something out of the cupboard! I was even hesitant to swim, let alone carry my own luggage! Once I got back from Hawaii I went to a PT, who was much more rational and gave me exercises to strengthen my back. I did eventually have a mild compression fracture almost two years later, which never hurt much and I have no idea how I did it. Between my PT, consistently walking and religiously taking my D and Calcium, two years later my DEXA numbers are unchanged. I will probably have to go on some medication. but I was glad to know that doing these things seemed to keep my numbers status quo. Good luck to you!

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