Hello all, just saw the old thread about osteopenia pop up on the news feed. I was about to ask my own question about what relevance it has to autoimmune disease (lupus, sjogrens or APS) as I had a bone scan last friday and I have osteopenia. I was on steriods for 2 years straight about 11 years ago and a couple of tapers in the next couple of years after that. I'm wondering if that was enough to cause this but I thought it was usually to do with prolonged use of steroid. Is there any other association with autoimmune?

For the record I also have osteoarthritis in the hip joints...at 31 years old!😭

30 Replies

  • I was diagnosed with osteopenia last week also! Seems like it is one new diagnosis after another these days. =( My gyne doctor said that I should do more pounding exercises, such as walking and stairs, which I already do everyday. Also, I am to take 1200 mg of calcium along with vit D and always choose foods and drinks with calcium added. The highest dose of steroid that I was ever given was 10mg and then a taper down to none. I have had steroid injections into joints, but only short term oral meds. I was so frustrated and upset about this diagnosis. No wonder people with AI diseases are susceptible to depression and anxiety--some new condition is always popping up. If the disease doesn't cause it, the meds will.

    My results were sent to my rheumatologist with a note from my gyne doctor to review, but do you think I would hear from him?!

    Sorry. Guess I got carried away with a little bit of a moan and groan.

  • Hello shareasmile. You're free to moan and groan here if you need to.

    The actual diagnosis doesn't worry me exactly because I know it's something the can be helped with supplementation and lifestyle. I just hope it can be a stepping stone in an overall diagnosis.

    They suggest to do weight bearing exercise. I struggle to even stay on my feet most days and picking up and holding my 2 year old for more than 2 minutes at a time is a battle. Not quite sure how I'm going to manage it!

  • Hi 1985mum

    Osteopenia is the pre-condition to osteoporosis and is caused by steroids unfortunately. You've been unlucky that it's had an effect already but it can be improved with diet and supplementation. Are you taking calcium and Vit d tablets?. You could also be a candidate for a bone strengthener tablet taken once a week before breakfast. Worth asking your GP /Rheumy about this. It's a constant juggle for us balancing risk versus benefit of drugs and as you say your limited with what exercise you can do because of osteoarthritis. Makes it tougher all round!. Hope I've helped. X

  • Hello Misty. Yes I am on vitd/calcium. My paternal grandmother had very serious osteoporosis so I'm wondering if there might be some genetic factor at play as well. It's nearly 8 years since I had any steroids and I'm wondering if the two factors together has sped the process up.

    The other question in my mind is whether calcium deficiency has anything to do with the disease process itself sans medication. As I'm undiagnosed and not on any prescription meds yet (or rather it may be that I'm waiting rediagnosis given history of ITP).

    All very complex 🤔

  • Hi 1985mum

    Osteoporosis definitely can be genetic so a strong risk factor for you. I think the inflammation caused by these illnesses might affect calcium absorbency but I'm not sure. Good questions you've posed. If you can keep up your calcium intake then there's every chance you will stay at osteopenic. Bottled water is a good source. Take CareX

  • What is a Bone strengthener tablet

  • Hi munu

    It's a pill that strengthens your bones to prevent osteoporosis fractures. Taken once a week. Lots of different ones. X

  • Hi, I have osteoporosis due to chronic vitamin d problems which are in turn due to photosensitivity

  • It's a vicious cycle isn't it. A game of cat n mouse where no one wins!

  • 7 weeks of prednisone use is sufficient to cause a reduction in bone mineral density. Age, diet, exercise also can have effects. Add this onto genetics, smoking, and bad luck.... You know what I mean. After 18 years of sporadic prednisone use I managed to break 3 ribs when I bent down to pick up a dropped pen!!! My nursing report I was writing was very short that night!!!! Keep up the good dietary input, minimise future steroids if possible, weight bearing low impact exercise with small hand weights and muscle building are good ( if energy permits). I also now have Prolia injection every 6 months. Keep your chin up.

  • Yikes that sounds awfully painful! Thanks for the extremely useful information.

  • Hi there, I want to say, there is a way to "get your bones back" - it's called bio identical hormone replacement therapy - if you go to you Gp they will look at you blankly. To cut a long story short, for years I suffered from insomnia (I have chronic fatigue now!) and at the age of 50 having tried everything out there and all roads Pointed to the "menopause" I tried conventional Hrt, which didn't help but then I read a book by Suzanne Somers (USA). I found myself in Harley street, because of my age they always check bones and I was given the news that my hips have Oesteoporosis, the good news is by taking bio identical hormone replacement therapy it mimics in a more natural way your hormone cycle (I use an estero gel on my legs daily and take a progesterone tablet on days 1-7) (plus vitamin d) If you've stuck with me so far, my point is I NO LONGER HAVE OESTEPOROSIS as the estero gel (estrogel) the last dexa scan showed my bones were much stronger and I am in the oesteopenic range, next year I will have another dexa scan and I half expect my hips to be in the normal range -! The thing is knowing what your hormones levels are is pretty important, but no one tells you! Interestingly, my GP offered me Fosemax which stops your bones degenerating any further but it does not build bone like bio identicals, and you can only be on it for a few years, so after that your back to square one! Apologies for going on, but I hope this help!

  • A very big help!! Thankyou

  • Please be cautious if you purchase compounded bioidentical hormone replacement therapies. Many producers make unfounded claims and their products are not regulated. You can learn more at fda.gov/ForConsumers/Consum...

  • Fosemax,so I have read stops the osteoclasts from working,and can give you cancer of you're jaw bone,rot so I jhave read 😬

  • Well, as I understand it the GP will only prescribe Fosemax for a few years as it halts osteo but doesn't improve it. After that your back to square one! I take a good (solar) vitamin d as well as my bio-identical. I try and have a dexa scan to check my hips every year - this is expensive though and cannot always do,it!

  • Cancer is very rare - but other jaw problems are found relatively often. There are other effects that are more common when you take it for more than a short time and that is why it is meant to be only used for up to 5 years maximum.

    Caroline - It can improve bone density levels but whether the new bone formed is "good" bone or not is disputed by many nor is there any proof that higher bone density means fewer fractures. People with good bone density break bones, other people with low bone density don't...

  • Hi, I started steroids at the age of 39 (once diagnosed with sle) and had my baseline dexa, it came back minus 2.2. I had never avoided sun previously, and ate healthy.

    I had to start the steroids regardless, (I've now been on them continuously for 5 years) and for a couple of years took calcichew twice daily, my next scan came back worse and then they finally checked my vit-d levels, they were at 10! (Normal range is 85-250 I believe)

    So once started on the vit-d the calcium had some chance to actually work!

    But unfortunately not well enough, my last scan at age 44 was minus 2.5 on spine.

    Although I am UV sensitive I don't do as much sun avoidance as I actually should :) but for some reason I just don't seem to produce vit-d.

    But it's all a little late for that now, and I've been given alendrolic acid. I've had 6 rib fractures (2 x 3 at a time) and one small fracture in the spine from tripping over and catching myself from falling.

    So I don't know what the link between lupus, low vit-D and bad bones is, but I am positive that it's not all just down to sun avoidance and steroids x

  • Thank you for that. It just confirms that I should go the extra mile now to get my vit d and calcium etc in tip top order to save a headache further down the track. I'm just so glad we've found it at osteopenia stage and I'm still able to do something proactive about it!

  • Yes definitely, you have some breathing room, I was so unfamiliar with it all that I didn't even realise that without the vit-D the calcium can't do anything! Is when you kinda put your faith in the doctors to do those checks for you I suppose!

    Good luck with getting them stronger :) x

  • Although the common perception is that osteoporosis is associated with taking pred that isn't the entire truth - about 40% of patients on long term pred develop osteoporosis. Since in the USA 55% of the general population over the age of 50 have osteoporosis you can see that blaming pred for it is perhaps not entirely the case for a lot of people! Lots of people develop it anyway and most only find out if they have a dexascan for some reason. I was on pred for over 4 years with no change in bone density at all - I have osteopenia but it is well within limits and the only risk I have is because I am still on pred. I also take calcium and vit D supplements - which all patients on pred should be given, the extra pred can prevent the loss of bone density without any more heroic drug interventions.

    If you have an autoimmune disorder then it is very likely that your vit D is low - and low vit D can lead in the longer term to loss of bone density because vit D is essential for the body to absorb and process calcium to form new bone. So there is a link to AI disease. You also have a strong family risk - but if the truth were told, that could also have been due to low vit D. Our grannies didn't sunbathe and if they were posh, pale and interesting was the order of the day!

    As for the "bone building" drugs I'd be very reticent until you discuss it properly, not just with a GP. They have some nasty side effects too, may increase bone density but that doesn't always equate to less risk. People can have low bone density and never have a fracture, others with "good" bone density break bones. The recommendations are that Fosamax/alendronic acid should not be taken for more than 5 years to avoid the nastier side effects (possibility of spontaneous femoral fractures), some are now saying not more than 2 years, There are other medications - but you start with AA normally. In the UK, the National Osteoporosis Society has a superb helpline where a specialist nurse will talk you through risks and options:


  • Yes I see that there are obviously a lot of factors at play. Thankyou for that sensible warning. I would never do anything without the doctors approval. I think at this point supplementing/lifestyle will most probably slow down the process. It has been said before that AI disease sufferers should maintain a top end of range vit d level and I'm beginning to see the importance of this now.

  • Maybe I should have been clearer - many doctors hand out alendronic acid like sweeties having been told by the sales reps that it is a wonder drug and will prevent all their little old ladies having fractured hips! With time it is becoming clearer that it too has feet of clay for some people - it can cause gastric problems even when taken properly and no-one with a gastric history should take it plus there are other quite common problems. It's unlikely a doctor would warn you off it - but you might want a lot more info than they will give you before deciding to take it!

  • Ok yes I can see clearly what you are saying now. Thanks ever so much.

  • I too have osteopenia and take Calcium and Vit D. I have read that eating prunes each day has amazing results at halting this from progressing to full blown osteoporosis and so I am giving it a go. Good luck.

  • Hi I meant to write last night but was way to late and I needed to get my head down. Interesting to read all the other replies so far. I have both osteopenia and osteoporosis, it came before I was diagnosed with Lupis. I had kidney stones first and the docs were suggesting my diet should change and I had to cut down on calcium and I was worried about my bones and they gave me a bone scan and sure enough I had both already, lucky me.... I was going to say that both my mom and aunt (her twin) had osteoporosis and each died as a result of falls (crumbly bones) so both my sisters and I understand the need for vitamin D, I just can't get it from the sun now (and how I miss that living near the sea). The three of us have some bone loss and discuss how to recoup it on a regular basis...I have been trying to get my energy up to build my bone density back through exercise, so far, work and housework is enough for me...

    I did do the bio identical hormone as well (prior to my diagnosis) which I received through a doctor in the states (long distance prescription), it did wonders for my sanity, but for not my bones (so it seems), as there is also breast cancer in the family, HRT was out for me. Gosh this sounds like a violin story....I did go on Fosamax against the wishes of my family (did not help my mom) docs here think as I was diagnosed earlier and should be more helpful...I hear of late this is not a long term solution and there is a good bone website with all the recent thoughts on it betterbones.com can sign up for their newsletter (they are more into natural methodology ie weight bearing exercise, yoga, good diet, etc.

    Like the prune suggestion... why not...more fibre in my diet.

    Good health...ML

  • Excellent helpful perspective maggielee. It's the personal experiences that make this forum special I will take all that info into account. Thanks.

  • Hi, I broke my wrist about the age of 40 and my gp was doing research into osteoporosis and asked if I would go for a bone scan as there was thought to be a link between women, broken wrist and osteoporosis. The results was osteopenia and have now been on vit d and calcium for 20 yrs ! This was about 13 yrs before lupus diagnosis. Must admit I go through periods of not taking tablets..... must start again 😔 I hadn't been on any steroids at that time. Very little follow up though, had 2 more bone density scans at my request with little change

  • It seems that once you've been found to have osteoporosis/osteopenia it is a very slow progressing condition. Any info I can find on it recommends monitoring every 5 years, so that gives you an indication.

    It's interesting you have it without any prior medical issues/medications. I think I read somewhere that it's suspected that 55% of the population have bone density issues regardless of health. But whether that % is higher in the autoimmune population is the question I have. Time for more medical study research🤔

  • I did a write up on predistone anyone taking this should be on calcium tablets you may also note teeth may brake etc also some of us even though we take calcium tablets are unable to get this into the system through the gut absorption if your on predistone calcium calcium calcium otherwise problems now one thing they say the sun will create d bit but u put sun cream on and that stops the body from producing it we can't win can we

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