Sticky Blood-Hughes Syndrome Support
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How often do we need bone scans if we are taking Low Molecular Weight Heparin ?

Also have any of you had significant bone loss. I take the calcium tablets that have Ben subscribed. I haven't been to see my consultant in London for a couple of years mainly because of the cost. I will go later this year though. I could get gp to refer me for dexa scan before then

if I should be having one.Would be glad to hear what the experience of others on LMWH are. Thanks for advice about reducing bruising from APS notfab. Going super slow has helped Thanks Ann

12 Replies


I was on steroids for years and that deteriorated my bone density and I have scans every 5 years. I wasn't aware that the LMW Hep would require more frequent scans - I inject Clexane everyday and have done for over 3 years now.

Ask your GP about the scan, but I don't think there's a great urgency (in my completely non-medical "just an experienced patient" opinion). In case you haven't had one, they are painless and quick. The last one I had actually taught me how to stretch out my back when it gets tight!! (lie on your back with you upper legs at right angles - rest your lower lesg on a table, sofa, cushion etc to keep the angles to 90 degrees)

The thing I have been advised that helps failing bone density is "bang bang exercise" like running, walking etc - impact exercises. But you will have to deal with the bruises then. I have to say, I don't care about the bruises any more, they just prove I'm active.

Hope that's some-way helpful.


Thanks that s reassuring. I like the phrase bang bang exerercise. !


Anne I was told every two years for a Bone scan if you have any risk factors. They could be Thyroid Disease, Celiac, Early menopause etc but I would also add in taking LMW Heparin to be on the safe side.

I had not had one for three years and they just did it last month. I had very little change which was probably just age related and nothing to do with anything else.


Thanks for this people's, I didn't know about it, my late had a similar illness and had early signs of osteoporosis , I use warfarin but inject when INR 3 or below, do you think it's something I should ask for?


If you have no obvious risk factors then every three years would be good if you can get yourGP to comply. Getting a baseline one done is also good as its something to use as a reference.



I'm on Fragmin (LMWH) and I had a bone scan just after starting it, about a year ago, and I am told that I should have another in two or three years.

Prof Hughes told me that LMWH does not cause bone density loss, in the same way as the older Heparins did.

I take Vit D tablets and I also make sure that I have a good intake of low fat dairy products too; bio live yogurt etc.

Best wishes.



Thanks everyone. I did get a baseline one done when I started on the injections. I will mention it to gp next time I will see him. Thanks again Ann


I am similar to Tasch, I have been on steroids in one form or another since I was 8.

I was diagnosed with osteopenia last year after my second dexascan.

I was prescribed aneldronic acid but can't bring myself to swallow something that could dissolve my oesophagus!

Doctor told me to drink pint of milk a day as I can't tolerate any of the tablets.

Itt is a bit of a worry as heparin can cause osteoporosis butall medication comes with some sort of a snag.

I am off to see MK this afternoon at St. T's



Ask him about it. Sue. He has written a paper in it. His experience of long term use with his patients seemed to show the risks not that significant . Hope you have good result from appointment. Will have to look up osteopenia. I hope it doesn't affect you badly. All the best Sue


Hi SueLovett, you say "Doctor told me to drink pint of milk a day as I can't tolerate any of the tablets." Are we sure that adults efficiently digest and absorb calcium from milk??? I was always led to believe not, as we're almost the only animal that still drinks milk as adults - our guts just aren't designed to digest it. Maybe worth looking into? Consult a nutritionist or naturopath for alternative sources of bone support? Lots of sardines etc. would be one suggestion, I'd imagine.


My bone density was osteopenia and I had lost an inch and a half of height when I discovered I have Celiac and went on the GF diet. Within a year my bone density was better then normal and I regained an inch of height! Seems if your gut is inflamed it won't absorb the proper vitamins and minerals.

People pity me for being on a GF diet. They feel guilty for eating baguettes, pizza or cake in front o me. I keep reassuring them that they do not need to feel badly about this. To them its food. To me its poison, and now that I know what it was doing to me I am never tempted.


That's really interesting the GF diet keeps cropping up. My cousin. has recently been diagnosed and its cleared up awful.joint pains.


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