Hi guys, so I saw my doctor last night for a 2-year review of my osteoporosis. I was diagnosed 2 years ago after a low-trauma fall fractured my shoulder, and I was found to be osteopenic then, so they said with that plus the fracture, they were happy to diagnose osteoporosis.
Anyway, last night my doctor said my bones have deteriorated much more over the past 2 years, more rapidly than expected, and I am almost in the range for clinical osteoporosis now. The doc referred me to an endocronologist to decide if I should be put on lifelong medication to strengthen my bones. I have been taking vitamins, but clearly they are not doing the job.
I have no risk factors for osteoporosis—only lupus. Oh yes, and apparently taking hydroxy can increase your risk for osteoporosis.
Feeling very down today, I was crying all day at work, and now I feel worn out and depressed. I’m 42, looking at lifelong medication, because my body is eating away my bones from under me. Can anyone relate? Encouragement and cute pet photos welcome.
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oh hun I hate to think of you crying but totally understand why you would 😒.
. I don’t know the Australian healthcare system when it comes to bones but I have experience of it here in the UK as my mum has had severe osteoporosis for many years . She initially had injections which in a basic level acted like glue (tera) then moved onto the UK mainstream drug which is aledronic acid . Now she is on a newer drug called Denosumab which is injected every 6 months . She was diagnosed late 40’s . Denosumab has by far been the most successful for her with the least amount of side effects and easy to forget about as only have to have it every 6 months . Australia may have better drugs ?
. I would definitely recommend joining the osteoporosis society . They are so good and you can speak to a nurse 👩⚕️. Don’t be put off by any literature that is focused towards more mature population as people our age do get it .
I’m sure you do exercise anyway but weight bearing is really important so ideally walking , gentle Pilates / yoga but definitely no extreme twisting (reaching from drivers seat to back seat not good ) and ideally not flexing your spine forward . They will prob give you a high calcium tablet plus D and I’d ask about magnesium as most women are deficient . The spray is nice if you don’t use it already .
I bet you already look after yourself really well so no lectures there 😘😘… keep us posted on your appointment with endo as they will want to check you for a few things and do bloods etc
Thank you! I didn’t know about the osteoporosis society, so thanks for sharing. Will have to look into it. I do take magnesium and the Vit D spray, my vitamin levels are good, so it’s more of a case of vitamins ain’t gonna do much for this thing. Exercise—I don’t do any! Unless daily stretches and physio counts?
Thanks for sharing about your mum, sorry to hear of her severe condition. The doc mentioned the 6-monthly injection option, but we’ve discarded that one already, as it carries high risk of jaw bone problems—and my jaw bone is already collapsing! So it might have to be a weekly pill or some other alternative. Anyway, I’m about to head overseas for a couple of months, so will probably see the endo in Oct. Thanks for replying xx
READ CAREFULLY about all options. In my mid-fifties I was given RECLAST (infusion- every 2 yrs) and I had a very BAD REACTION to it about 10 hours later.
I couldn’t Breathe (ribs would not move up & down) & I couldn’t TALK (JAW was killing me to even try to whisper).
I called the Rheumatologist & he immediately said I was having a Bad reaction to the the DRUG - same as his SON (teenage Basketball player w/BROKEN LEG that took drug 🤔🤔)
He gave me “PREDNISONE pack” (steroid pack) and it took 3-4 days before BONES stopped hurting & I felt basically normal.
I am only doing CALCIUM, D, Magnesium, weight bearing exercises, walking - not enough - but afraid now over 10 yrs later to do another Osteoporosis Drug.
I am “Discussing” TOMORROW w/my Rheumatologist to see if there are any NEW DRUGS OPTIONS (yes - I have heard of one new option) to see if I feel OK about trying it or other ideas.
I learned to STAY away from “EXTREME rides at Park, focus on BALANCE ISSUES, stay away from unsteady/slick areas, etc“
MANY PEOPLE “do fine” on the OSTEOPOROSIS DRUGS - READ & STUDY (side effects, how they work in building bone, etc) of each DRUG before deciding with your Doctor.
WE can be “upset” with each OBSTACLE that LUPUS brings us, or FACE it as just ANOTHER CHALLENGE - we need time to adjust and “REFOCUS” to move forward.
Lupus (SLE) can & does affect any BODY “system” (thus SYSTEMIC Lupus).
We try to EAT HEALTHY, stay away from STRESS & SUN, think “positive”, REST as NEEDED or as BODY “asks” before FLARES GET STARTED, takes our Medicine as prescribed, don’t PUSH to hard, ……then we are in this WAR of many different BATTLES to STAY on top of EACH STAGE.
Sending you PRAYERS to stay “PROACTIVE & keep LEARNING” more each day about yourself & how to handle each battle of Lupus coming our way. 💜💜💜
Thank you Djlr, gosh what a horrible reaction you had! I think that’s why my doc wants me to see the specialist, to talk about all the options and side effects, and decide on which one is the best to try. Hopefully he can help with any reactions that may arise.
Hi there. Yes I can relate. I had a good old cry when I was told I had osteoporosis too , then aged 50. I am now 65 and still here! Apparently Lupus is a risk factor and I am short and have had steroids in the past which all contributed according to my rheumy.
Initially I was put on alendronic acid tablets but they gave me stomach issues so I had yearly infusions of zolendronic acid instead. I had these for 5 years and they were successful in stabilising the bone loss. I found the infusions themselves painless but always had a rough few days afterwards but I felt that was worth it. I try to walk every day and make sure I have sufficient calcium and I take a vitamin d supplement.
Initially the diagnosis made me anxious about falling - I have vestibular issues as well which doesn't help, but now I feel I have come to terms with it and wear sensible shoes, have a hiking pole if on rough terrain etc. It's the lupus that stops me doing things, not the osteoporosis.
I do understand your sadness, these diagnoses make us feel we are no longer who we thought we were and we have to be kind to ourselves whilst we take it all in and then adjust and carry on with whatever lifestyle and treatments are right for us. We are still the same inside though. A way of turning this on its head which might be helpful- is that I am glad I fell and broke my wrist at 50 and was told I had osteoporosis as it led to early diagnosis and treatment which stopped it silently getting worse over the following years with noone knowing what was happening. Maybe in time, you might feel this way too. Big hug. xxx
Thank you lupime! Yes, I can totally relate to the silver lining of a fracture leading to a much-needed diagnosis (this could describe much of my lupus journey!) so thank you! I am allowing myself to feel the sadness—there’s nothing wrong with grieving for what I’ve lost—and I reckon I’ll bounce back in a day or two. Like you, I have balance issues, so I understand the anxiety about falling! Especially as it was a fall that lead to all these investigations for me.
I eat a lot of calcium, and my diet is good, but I find it hard to walk every day. I am aiming for simple movement at present, but it’s hard when I’m so tired all the time! But I suppose everyone on here can relate to that one!
Thanks for sharing your experience of medication. It will be interesting to hear what my endo thinks, given the other issues I have going on, and which side effects will be the most manageable—balanced, of course, with which meds are likely to give me the benefits I need. I’ll probably see him in Oct as I’m going away over the next couple of months. Will keep you posted xx
If you go on the National Osteoporosis website they have an excellent series of fact sheets on simple exercises which might be helpful and they have a film too. I also use what I call Jane Fonda for old fogeys - if you google Jane Fonda Fit and Strong level 1 - this is what I sometimes use, its at quite a gentle level. The key thing is that the exercise should be weight bearing.
I'm sorry to hear about your diagnosis of osteoporosis. I was diagnosed with it in my 20s, partly due to having anorexia and of course the steroids (I didn't know that about the Hydroxychloroquine, which I've also been on since 2005). However, I'm now in my 40's and I've managed to only ever have one stress fracture in my foot and otherwise been okay. I was on Calcitriol for many years and the Osteoporosis didn't get worse. They prescribed me that instead of a bisphosphonate as apparently they're contraindicated in premenopausal women.
However, they took me off this earlier this year as it's very difficult to measure accurate vitamin D levels so they switched me to Cholecalciferol and put me on a high dose course for 8 weeks and then dropped the dose. They will monitor my bloods and then tweak the dose as necessary.
Thank you, every little bit helps! It’s interesting to hear the different medication options. I think my doc was contemplating bisphosphonates for me, even though I’m premenopausal, because of the high risk the others carry for jaw bone deterioration and I already have bad TMJs! Anyway, I’ll see what the specialist thinks in Oct. Thanks again.
Thanks for sharing…it’s worth mentioning I have already done all the TMJ exercises, including specialist physio, and only surgery will help me now—my joints are literally disintegrating! Hopefully the vids will help someone else on this site though. Thanks again.
Sorry no pet photos…just empathy with your diagnosis….you are indeed unfortunate to be diagnosed with Osteoporosis so young…but looking on the up side ..now you know…you can do something about it. Like Lupus, RA & many other diseases - accepting a diagnosis is not easy…and everybody on this site….has had to come to terms with conditions they don’t want. So try to work towards acceptance …then you can concentrate on finding out what treatment is available & get started on the medication your doctors prescribe…that will hopefully slow down the progress of your bone deterioration.
I know there is an Osteoporosis Society in Australia…so once you feel up to it…why don’t you contact them? You will be able to get information on what is available treatment wise where you are, & possibly meet others in your situation? I believe there is an OP site here on HU as well…so you can take a look there too.
I am much older than you & I was only diagnosed with OP a few years ago…I’d had scans regularly with no sign of bone deterioration….in fact it took an X-ray after a fall that revealed a fractured vertebrae to get diagnosed ….so it’s mostly age related for me. But now I’m on a Biophosphonate & even at my advanced age my regular Dexa scans are showing some improvement.
I do hope you get some treatment quickly & that you can get around to accepting that OP whilst serious, is much more controllable these days….& that once your treatment regime is organised…things won’t feel so bleak.
Thanks AgedCrone…I guess acceptance will come with time, but for now, grief is present. It’s not fair that some of us get OP so young, not fair that lupus has taken yet one more thing from us…and it’s OK to grieve that. Thanks for the tip re: OP Society in Oz and the OP site on here, will have a look. Thanks also for sharing your story, and good news about your bone density results too!
While it is great to hear that you have been given a diagnosis and that you have started the new medication (which I am hoping will begin to make a difference)... I am sorry that you have been feeling so down and wiped out because of it.
You may have come across or been given this information before…. however, I have pasted a link below to the World Lupus Federation, which has further links to lupus groups/pages around Australia. They may be able to offer support locally to you or have local helplines.
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esa
side effects of meds/side effects of lupus ?whats worse???
A lifetime…and still no diagnosis.
How do I get a diagnosis?
Osteoporosis, muscle weakness etc
