34, Osteoporosis and scared of drugs - Bone Health and O...

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34, Osteoporosis and scared of drugs

Chaucer89 profile image
41 Replies

Hello all

So just seen my GP regarding many matters including my recently diagnosed osteoporosis in my spine (-2.5). She wants me on supplements which I’m okay about but also to try bisphosphonates which I’m very not okay about. All I’ve read about them scares me stupid. I have tremendously bad luck with medication, never met one I could tolerate either because of heart or liver usually. I already have very bad reflux issues and severe emetophobia on top of that so the idea of taking something that cause major stomach issues no matter what the level of risk is stressing me out.

I asked about just doing diet and supplements for now at least considering my score but she says she’s worried that given my age (34) and that I’ve been very underweight most of my life (43kg at 5’4”) and it’s virtually impossible for me to put weight on that if we leave it it will just get to a point of no return and pain. I have scoliosis which was fixed 20 years ago, take PPIs, and have an underactive thyroid for which I take levothyroxine which can all be a perfect storm of rubbish bones. She’s referring me to rheumatology but the waiting times for that department is donkeys so I just wanted to see what others experiences have been like taking bisphosphonates and what you think I should do. I’m only 34 so got a potentially long time to keep bones going but the short and long term effects of the drugs scares me more than my bones crumbing. Especially when studies seem to suggest they don’t make a huge amount of difference.

Any reassurance greatly appreciated

TIA

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41 Replies
Sheeniejay profile image
Sheeniejay

I had a similar situation. When I decided I wanted to take meds, I asked to be referred to an endocrinologist and, instead of biphosphonates, I asked to be put on tibolon - which is a kind of synthetic hormone and many clinical studies have proven it to improve or at least stabilise further deterioration in bone density. I was put on it for three years and my bone density stabilised but I do also take high strength calcium and vitamin D and do sport so one tibolone pill is not a magic wand.

They would probably be reluctant to allow you to go on further than 3 years with it but you would see your bone density scores at that stage and see where you are at mentally and physically.

I was in my mid-to-late forties when I started and now I have switched to HRT because peri-menopause/menopause kicked in - which was difficult to prove because my low BMI meant no periods anyway.

The reason I did not want to try biphosphonates in my forties (or earlier, come to think of it, because my GP, when I lived in the UK - I have been in the Netherlands since 2014 and my specialist who allowed me tibolone is here) because I was scared I would have severe side effects and I have to hold down a job obviously. I think biphosphonates have a limited period too so if they would generally only allow you 3 years on them, perhaps ask if you can try tibolone instead and then revisit the conversation after 3 years?

I had zero problems with tibolone. There will be people who had zero problems with biphosphonates too. I should say I am not medically trained and am only relating my experience and understanding of your fears.

Good luck.

Chaucer89 profile image
Chaucer89 in reply to Sheeniejay

That’s been my biggest queury about these drugs too, I’m only 34 and if the average time for being on these drugs is <5 years before need to switch or go on a drug holiday then it does not bode well considering that doesn’t even get me to 40! The long term effects just normal time frame isn’t great nevermind potentially another 40 years!

I happen to be seeing rheumatologist and gynaecologist soon so I will ask both sides and then also ask to see endocrine if they are the better people to ask in hormones aswell. I think I wouldn’t be allowed any hrt type drugs given age but I’m the same as you, I wouldn’t know if or when I hit menopause! I’ll read more into tibolone and see if it could be suitable. I think whatever I end up doing will be a case of just going scan to scan and adjusting as results come in whatever they be!

Thank you for replying 😊

Sheeniejay profile image
Sheeniejay in reply to Chaucer89

Perhaps try not to plan so long term. That's kind of what I decided. Take 3 years. If on tibolone your bone density has improved, then you can take a treatment holiday. If it's stabilised, then it's likely your specialist will suggest a holiday too. That's what happened to me - it was only because I figured out, from the rapidly increasing number of other issues, that I was going through menopause, that the endocrinology team, discussed my case with the gynaecologist, and I am now under her care on HRT. I forgot to say, my endocrinology team have a specialism in bone research which is how I found a team who agreed, for a woman in her 40s, with my circumstances, tibolone was the right treatment

Chaucer89 profile image
Chaucer89 in reply to Sheeniejay

Oh yes I’ve learnt with my health never to look to far in advance! I take day by day never mind year by year. That’s really interesting they put you on that, I’ve been trying for years to get to see an endocrinologist but you have to tick so many boxes of symptoms and test results before you can see someone now that it’s very difficult. I have PCOS so hormones have always been out of whack. I’ll certainly ask if it’s now possible.

LM100 profile image
LM100

I don't have much to add but if you take PPIs, then I think you should take calcium citrate rather than calcium carbonate because the latter needs stomach acid to aid absorption. And citrate has fewer gastric effects generally.

Chaucer89 profile image
Chaucer89 in reply to LM100

My GP has prescribed Colecalciferol 880unit / Calcium carbonate 2.5g and waiting for that to turn up. I’ve recently lowered my PPIs from 40mg to 20mg daily so will see how I go but I think I need to just make sure I don’t take them within 4 hours of my other medication and will be okay. I have fortnightly bloods at the moment so I’ll hopefully soon see if I’m absorbing it all! I will definitely ask about cirate though if I’m finding these tough on the gut as I fear they may be.

Thank you for replying ☺️

ChristineK profile image
ChristineK in reply to Chaucer89

Do be careful, as Calcium Carbonate is basically chalk and clogs up the arteries. It's better to get Calcium from you diet and take a Vitamin D3 supplement.

Chaucer89 profile image
Chaucer89 in reply to ChristineK

Oh yeh I’ve heard that, Id love to try just do this by diet if I can soon enough, I will talk to dietician and rheumatologist. My calcium is normal levels at the moment. Maybe once I’ve got it by to a certain point they’ll be happy to see if I can get enough by food. I’m not looking forward to the side effects of taking these supplements anyway so happy to not take them if I can!

HeronNS profile image
HeronNS in reply to Chaucer89

Yes, calcium citrate much preferable. I've read that taking calcium with yoghurt can help with absorption. Years ago, before I switched to citrate, I used to take the carbonate form with orange juice. I know things are different in the UK. In Canada none of my supplements are covered by insurance so that makes it easier in a way to select what I think will work better for me, although I have to pay.

KiaMarie profile image
KiaMarie

good Morning 😃

I feel the same as you! Most Drs want to put us on medication and when I read the side affects, I decided to research supplements.. I do know we need much more than Calcium and D.. I take Grow Bone I got at a natural alternative store.. it has many more supplements in it. I take extra D.. Meds are a lifetime commitment and you’re so young. Weight bearing exercises are a key also! I take classes 3x a week..

There is a QCT test we could ask for that is different from a DEXA. It will show us fragility. I hope I made sense..

Keep in touch

Sending hugs

Chaucer89 profile image
Chaucer89 in reply to KiaMarie

Hi 😊 I’m definitely going to ask about if they do REM scans and the fracture test on NHS before I do any medication, Id like a clearer picture of what the rest of my body is doing and in particular the rest of my spine!

I think I’ll definitely look into some weight bearing exercises more than just my walking if I can but think I’ll have to keep to just doing it at home as my health is very unpredictable! Something like yoga with weight bands etc maybe.

Thank you for replying! ☺️

HeronNS profile image
HeronNS in reply to Chaucer89

Yoga, Tai Chi, Nordic pole walking, all help, as does simply walking. Walking upstairs helps cardio, walking downstairs is good for the bones (because of the impact).

Fruitandnutcase profile image
Fruitandnutcase

I see you are in the U.K. if you can afford to I would go and see this man osteoscanuk.com - he is a spinal consultant so he knows about spinal conditions - and you will find him very calm and reassuring. You may find that although your density isn’t great (I’d be very happy with -2.5) your bone strength is ok.

Obviously PPIs aren’t great for your bones nor is being underweight and it is having a hyperactive thyroid is the problem for bones.

Could you try going on HRT to protect your bones? You could try increasing weight bearing exercise and try wearing a weighted vest betterbones.com/exercise/to....

There are lots of books out there that give advice on bone friendly vitamins and supplements - you will need to take vitamin D3, I started on Ad-Cal in prescription from my doctor but the calcium really upset my gut so I stopped when my fracture liaison nurse and I decided I was getting enough calcium from my diet - although I take a daily seaweed based calcium tablet just to be sure and I buy my own D3 because I test regularly and vary how much I need depending on the results - I vary between 1000 and 3000iu. I also take K2-Mk7 healthline.com/nutrition/vi... and I also take magnesium, boron, Omega 3 DHA Algae oil.

I can definitely recommend the ROS lists of calcium and vitamin D foods theros.org.uk/information-a... but it is a very good site to explain everything about osteoporosis and its treatment so it is worth having a browse.

I don’t take bisphosphonates- I started but had a terrible reaction to them and stopped after four months. I have declined the offer of infusions for the same reason so for me it’s weight bearing exercise plus extra good food, xtra vitamins and minerals. On the other hand I have friends who are perfectly happy taking bisphosphonates both as a weekly tablet or as an infusion. I also have a friend whose 30 year old son was found to have osteoporosis and who joined a gym for an exercise programme and seems to be improving. So I’d say read as much as you can about osteoporosis and if you can see Dr Nick Birch for an OsteoScan. It’s worth the money.

Chaucer89 profile image
Chaucer89 in reply to Fruitandnutcase

Thank you for the links, I’ll save all and give them a look. I know Dr Nick Birch is planning to set up a site very near me soon so I think that will be an option next year if I can save up enough. I’d definitely be interested in getting a REMS scan considering how many say scoliosis can make dexa scans unreliable.

The more I read the more likely I’m thinking of going supplement, diet etc route for now at least, give it 2 years to my next scan and go from there. I’m right on the cusp so I’m hoping with hard work I can keep it there. My doctor has prescribed supplements but as you say they can hard on the gut so I’m going to see how they go and then if can’t tolerate will have to up my diet. I’m seeing dietician at end of this month and on list to see rheumatologist and gynaeo, I don’t believe I can go on HRT given my age and not being close enough to menopause yet, but I’ll be discussing all options with rheumatologist and gynaeo and maybe go from there.

Thank you for replying 😊

Izz100 profile image
Izz100

Dear Chaucer I'm sorry you're going through all this and I can well imagine that it is kind of scary at such a young age. Also from reading your post I get that you have had a number of complications that I myself take Binosto now since two years and it has worked fine.

I take the pill version which is basically a water soluble tablet once a week and implies that I sit still for half an hour and then just eat something substantial on top of that.

For me it has worked out quite well and I don't have any side effects.

I do think that having such a diagnosis implies that you rethink your choices not only what you eat but also how fit you are and what type of exercise you do.

However, at the end of the day our life must be worth living so you should not forget to have fun and enjoy things from time to time. personally, I'm pretty convinced that my osteoporosis also stems from my exaggerated choice of drinking a lot of Diet Coke when I was younger , I stopped as soon as I had my diagnosis.

Hope this helps

Chaucer89 profile image
Chaucer89 in reply to Izz100

I’m trying to remember for every bad review I see where someone was very ill there are millions who take these drugs absolutely fine but very hard to do so when it plays on your biggest fears! I’m glad to hear you manage the pills okay, that’s reassuring. I’m sure I’d be fine but it’s just the not knowing until it’s already in your system that’s the issue.

I’ve been, despite my poor health for most of my life, pretty healthy individual fitness wise at least, active and walking. My back means I don’t like to sit, stand, lie down too long for any one period to avoid pain worsening. I used to be a competitive sportsperson and was running 10ks only 6 years ago. I now make sure I walk everyday at least. And I thankfully have always have had a healthy diet as my liver doesn’t allow otherwise! I can’t eat lots of fatty sugary or rich foods but still enjoy cake and the small bit of chocolate each day! As you say got to have your little enjoyments in life.

Thank you for replying ☺️

Met00 profile image
Met00

Sorry to hear of your diagnosis at such a young age. You do have age on your side though, which means in theory you have a much better chance of improving your bone density without meds than us older folks have! Can I ask why you were sent for a DEXA scan? Have you had a fragility fracture? Also, do you know your t-scores for your neck of femur and total hip? If only your spine is -2.5, then that's only on the cusp of osteoporosis. I thought there was a preference for trying more natural routes with younger people, rather than offering medication, but I may be mistaken about this. Clearly you do have a number of risk factors for poor bone health, but that doesn't necessarily mean that you're going to fracture. I assume that your doctor has referred you to a dietician with regards to your weight? Are you able to do high impact exercise (running, jumping, skipping etc) and progressive weight training? These types of exercise have been shown to build bone, and that's particularly likely in a younger person.

Take your time to get some answers. Even if you do decide to go down the medication route, there's no rush to start this as bones only change slowly.

Chaucer89 profile image
Chaucer89 in reply to Met00

My GP ordered it because I’ve been so underweight for so long and with the other factors she just wanted to check what my bones were doing. She’s a very good/proactive doctor with all my going ons. Outside of surgery for scoliosis, never had a fracture or broken bone in my life! (As far as I know anyway)

My femur was still only -1.5 so counting as osteopenia which is why with my -2.5 for spine as you say right on the cusp, I feel it might be jumping the gun on medication just yet but I sort of understand why she is, I have numerous health conditions and am seemingly constantly developing more each year and my weight is very unlikely to ever reach healthy levels. But I think if rheumatologist is happy with it I’d definitely prefer to try the exercise, supplement and diet route first. I am well known for developing the rarest and weirdest side effects of medications and even the common ones of these doesn’t sound nice! I walk everyday and can see about fitting in some yoga, weights etc in my day too. Doc has prescribed me supplements and I’ve been working on my diet to include more protein and calcium etc. I’m already seeing a dietician for my weight anyway so will be discussing all this with her later this month which is handy.

I think it’s just a potentially very long time to be on those drugs and with the known long term effects, I’m not liking the prospect. I’m continuing to read and as you say there’s no particular rush in it.

Thank you for replying 😊

Met00 profile image
Met00

That's good that your GP is looking out for you, but I'm not sure that you need to be on meds at this stage and think you're perfectly entitled to ask to look at diet and exercise instead. That's a big difference between your spine and neck of femur scores, which can be indicative of an error having been made with one or both (unfortunately DEXA scans are prone to error). When you said in your original post that your scoliosis was fixed, does that mean you no longer have it at all? If you do have curvature in your spine, depending on the severity, this can make it almost impossible to scan your spine accurately. I would definitely raise this as a concern with your GP. Unfortunately most GPs know very little about osteoporosis or DEXA scans, so you may need to ask her to do some reading around the subject!

If you use Facebook, you might find it helpful to join the group Osteoporosis UK - Friendly Support & Natural Options, where the focus is largely on avoiding meds where possible. I'm fairly sure there are some other young adults with osteoporosis in the group.

Chaucer89 profile image
Chaucer89 in reply to Met00

It was 73 degrees (I have scoliosis and kyphoscolisosis) and had 2 rods put in to straighten so now it’s around 26 degree curve. She managed to scan the lower part of my spine which is not curved. I’m definitely going to ask rheumatologist about the accuracy given my scoliosis and whether they do REM scans etc. I’ll also do some more reading more my appointment whenever that is.

I’ll have a look at the fb group too, thank you that’s really helpful, I’d love to find more people my age dealing with this.

Rowan7 profile image
Rowan7

Good afternoon, you can try to take charge of digestive issues. Do research IQORO, non drug intervention ( I believe can be prescribed) and do a calcium intake calculator to determine your need.

2 years of various ppi's damage to my bone health, a known yet under comminicated effect. My reflux etc was later found to be an allergic reaction to long term use of ppi's.

Do also find a way to see Mr Nick Birch, Osteoscan who will give you calm, considered, professional expert opinion and advice. I recently did, revealing hospital dexa scan inconsistencies and poor data interpretation. A superb investment for my future bone health and confirmed my decision 3 years ago to resist pressure and avoid drugs in favour of keeping my own agency. Do keep as cheery and active as you can. x

Chaucer89 profile image
Chaucer89 in reply to Rowan7

Thank you! I definitely think that’s going to be a thing I’m going to pay for when he comes to my area next year. I’m very curious and will hold off meds until I do.

I’ve been on and off PPIs for years now due to reflux since I was a teen but I’m looking into low acid diet etc so maybe can come off them again. It’s tricky when I have to factor in my dietary requirements for other health conditions but will work with dietician and hopefully can find a common ground!

Thank you 😊

Rowan7 profile image
Rowan7

I think the thing is; to take time to research and absorb information and anything you are unsure of, let it settle and make an informed decision that works for you. This online community saved my sanity. x

Bertiepuss profile image
Bertiepuss

Hi Chaucer89 , don't panic, there is no great hurry to take bone drugs just yet. I'm 45, similar position as you. Spine -2.0 overall with 1 vertebrae at -2.5. Hip -1.6. I'm investing more natural approaches first. You will get brilliant advice here, Met00, amongst others reassured me on a post I made a few weeks back, I was very grateful of their input and felt less freaked out. Well worth looking at my old post (linked below) as I think a lot will apply to you too. I have booked Nick Birch for an Osteoscan to double check DEXA as DEXA doesn't show bone quality which is important.

healthunlocked.com/boneheal...

Take a look at Dr. Doug Lucas on youtube, I learnt a lot from him. Also Dr Susan Brown.

Chaucer89 profile image
Chaucer89 in reply to Bertiepuss

Thank you for this 😊 sounds like you have been similar situation to me. I agree this forum site has been invaluable support to me in many health areas. It’s so good to be able to easily find other people going through the same thing as I find doctors can often be very dismissive of how bad side effects can be if it’s a quick, easy solution. Anti depressants a case in point of which I have near two decades of previous hideous experience with!

I am curious about the accuracy of dexa scans given difference between lumbar and femur/hip, some studies seem to say it’s common to have a difference and some say the difference is so negligible that one area can be assumed to reflect the rest of the body. Very confusing! Certainly not wanting to go on any medication till I’m sure of what I’m dealing with. Continuing to just absorb information and make any decisions slowly.

Bertiepuss profile image
Bertiepuss in reply to Chaucer89

You're welcome 😊 Yes, 2 decades of AD's for me have lead to an addiction and now can't get off them without serious withdrawal symptoms ☹️

What is great is you've got an insight as to what's happening while you're young and can do things to improve the situation before menopause hits and oestrogen substantially drops. I suspect there are probably lots of 30 something year olds with osteopenia that will never find out until their first DEXA in their mid 60's once they are already into the osteoporosis range.

Yes the DEXA is a difficult one, it's also less accurate for small-boned petite women which clearly you are. I think if you can afford it, it would be well worth getting the Osteoscan so you can see what the quality of your bones are like so you're not just relying on the density measurement the DEXA provides.

Sorry if someone else has asked this already. Have you checked your levels of Vitamin D and Ferritin? It's important these are at an optimal level. As you say, you feel you're underweight, maybe you are not absorbing your vitamins and minerals as well as possible. Underactive thyroid can also play in to this. Good that you're going to see a dietitian, you will be able to bring this up with them too.

Chaucer89 profile image
Chaucer89 in reply to Bertiepuss

Getting off antidepressants is hell on earth, done it at least 10 times and most of the times I’ve had to do it very quickly which I don’t recommend as (eventually after a decade) I found out my heart very much didn’t like them! I just used to keep myself home and get through it and the only goal was keeping myself alive till they were out my system. Just utter hell but it does eventually end.

I’ve had my vit d and ferritin checked recently and all good, I spend every hour I can in the summer outdoors too, rather handily I have fortnightly bloods because of other issues so it’s useful to be able to keep track of these things. Despite my weight I have a very healthy diet and my intake of food is good, I can’t eat lots of fatty or rich foods due to liver so I eat healthy. No one has yet figured out why I can’t put on weight despite numerous tests over decades of time but been the same since I was a child so for all I know my bones have been slowly going since then considering my spine is already osteoporosis. They have put it down to weight, thyroid, thyroid meds, PPIs and having scoliosis. Though I am asking if they’ll rule out parathyroid just because I’m known for my weird and wonderful ways of getting the rarer side of things!

Bertiepuss profile image
Bertiepuss in reply to Chaucer89

Poor you, 10 times, that sounds so hard. I've tried 4 times and after 4-6 weeks of no let up of the withdrawals I then give up and start taking them again.

Great that parathyroid is being checked - make sure they use an EDTA vacutainer to take it and also a separate gold top vacutainer to do calcium and vit D at the same blood draw. The calcium one needs to be taken first so that the EDTA container doesn't contaminate it. Very important it is done that way to get accurate results. Maybe you know all this so sorry for repeating, it's just something that was mentioned to me and then I did further research about it here. hyperparathyroiduk.com/

Funnily enough I just got my parathyroid blood test done this morning! Had to do it privately (expensive!) as GP won't do it for me as my calcium was not raised. But, you can have normal calcium and raised parathyroid indicating a problem hence I felt I had to exclude this as a possible secondary cause.

Wishing you the best of luck on your health journey 🤗

Chaucer89 profile image
Chaucer89 in reply to Bertiepuss

I find GPs etc always advise people to withdrawal from ADs far too fast, they think it shouldn’t be as bad as it actually is so advise 2-4 weeks and it’s just too much. Some are lucky and have no issues but others it’s hideous. I know people who have done withdrawal over a period of several years to come off them, doing the lowering of dosage very very very slowly to avoid symptoms. Helps to have capsules so you can take out some of the medication each time. A right pain as got to keep dosage level but could be worth a go if you do want to come off them. Do it however best works for you 🙂

Haven’t heard back from doc about test yet but hopefully, if not im hoping rheumatologist will do it. I don’t have easy access to private where I am.

Good luck to you too 😊

HeronNS profile image
HeronNS

I hope I'm not repeating too much but having been on internet for several hours must turn off soon so can't read all the comments just now. Please make sure you have been tested for secondary causes of osteoporosis. Also have a read of my story, which although kind of old now does have some ideas in it which may help you improve your bone density without medications. Links below.

Be aware that the numbers designating osteoporosis were decided rather arbitrarily and it is the strength of your bones which is important. It is not easy to measure the strength and flexibility. At your young age it is very important that any underlying reason for a low bone density be determined. Even taking the PPI longterm could have had an effect as this type of med can interfere with nutrient absorption.

If I can recommend two main things - take Vitamin K2 (not K1) as it sends calcium to the bones and if you aren't already, make sure you do safe weightbearing exercise - many of us just start with walking, sometimes carrying some weight as in a weighted vest, but as you have some back issues please clear everything with a knowledgeable doctor and experienced physiotherapist, if possible. Lots more details in the links.

osteoporosis.ca/medical-con...

healthunlocked.com/pmrgcauk...

Good Luck! 🍀

Chaucer89 profile image
Chaucer89 in reply to HeronNS

Thank you 😊 I have today sent an online request to doc to see if they’ll add the parathyroid test to my usual bloods this week. Not sure they will but I made my case and will ask rheumatologist later on if GP won’t. I don’t think it’s going to be but with my ridiculous history can never say never.

I’ve lowered my PPIs to 20mg this last week, maybe if I can adjust my diet enough I can come off them again but it is a tricky thing to get right especially as I do need to keep calories high so that usually means more fatty foods which my liver doesn’t like and it’s all a vicious circle! I walk everyday and I suppose my food shop backpack counts as weights. I decided a weighted vest wouldn’t be wise with my scoliosis but I’m thinking of referring myself to physio to see if they have ideas as I have a bad hip aswell, I can’t do any floor exercises etc or I won’t get up again!

I’ll look into vit K2 too, thank you ☺️

HeronNS profile image
HeronNS in reply to Chaucer89

Best wishes. Do keep in touch and let us know how things go for you. Good luck with the doctors!

nottowell profile image
nottowell

Hi i took Aldronic Acid for a long time until they made me really ill sick for days, so changed to Prolia injections every 6 months, no side affects , but can't have teeth out and mustn't be late having them which i wasn't told about you have to way up the pros and cons

Chaucer89 profile image
Chaucer89 in reply to nottowell

Aldronic acid definitely seems like something to avoid.. I’d be more tempted by the infusions but I know the effects will last longer if there are any so I’m not sure. Definitely all something I’m going to avoid until I absolutely have to I think. Medication just by nature shouldn’t have side effects! Not ones that are worst than the condition anyway!

emersee profile image
emersee in reply to Chaucer89

Why on earth would you avoid treatment for what is a debilitating disease? Please get the treatment that is there, prevent fractures and try to live a normal life.

Chaucer89 profile image
Chaucer89 in reply to emersee

It doesn’t seem to be as simple as ‘treatment’ though, besides the fact they don’t grow new bone, they just store the old so it’s never going to be a full prevention of fractures and breakages, there are long term effects that could end up being worse than what I’m trying to prevent. I would be on these drugs for a long time given my age. Some with osteoporosis never fracture or break a bone, some do but long term treatment with these drugs can also cause a number of issues including breaking or fracturing of the thigh bone, osteonecrosis, issues with the oesophagus as well as stomach issues like ulcers and gastritis. This is not even mentioning the day to day side effects these drugs can cause so it’s worth proper research before partaking in anything. I likely wouldn’t be thinking so hard about it if I was much older but I’m 34. I’m not entirely ruling out the drugs forever but I certainly don’t want to do it before I know all the facts and my actual risk of fractures long term vs the effects of these drugs. I have numerous health conditions that could make it that I can’t tolerate the drugs anyway as has been the case of several medications I’ve tried before for other conditions, due to my heart and liver. If when I talk to the rheumatologist and get a clearer picture of my future then I will go from there.

emersee profile image
emersee in reply to Chaucer89

Please do not wait to have vertebral fractures before getting treatment. That decision changes your life.

Chaucer89 profile image
Chaucer89 in reply to emersee

Definitely won’t, but thankfully also doesn’t progress that fast. Don’t worry, I certainly don’t take this lightly (hence the stressed post and days of not thinking about much else) so will talk to all the right people and see what the options are. I’ve only managed to talk to my gp for 5-10 minutes about this so far so very early days yet! 🙂

emersee profile image
emersee

Take the drugs to improve your bones. You are too young to take a chance and wing it. These medications work with lifestyle changes. Please try the drugs.

Fruitandnutcase profile image
Fruitandnutcase

Have a REMS scan and a chat with Doctor Nick before you make any decisions.

FearFracture profile image
FearFracture

I was diagnosed in 2019, at age 50, with osteoporosis. Two years earlier, in 2016, I was diagnosed w/ Hashimoto’s related hypothyroidism. In 2019, my 1st DEXA showed my lumbar spine T-score was -3.9 and that my hips were both in the -3.1 range. Note, I too was light-weight for most of my adult life, up until my thyroid stopped working correctly. I’m 4’11” (have not lost any height—no fractures) and up until 2016 my weight ranged from 92 lbs - 101lbs. I went through an extremely early menopause (age 32) for unknown reasons. After my 1st DEXA my endocrinologist pushed bisphophonates (he told me my bones were “horrible”) so I took alendronate for 1.5 yrs and quit taking it because it was causing digestive tract issues. I took a 4 month bisphophonate holiday and in 11/2021, at my endocrinologist’s urging, had one zoledronic acid infusion.

I’d been so focused on the side effects of taking zoledronic acid and getting every tiny cavity in my teeth filled (to avoid ONJ) that I didn’t delve into understanding osteoporosis prior to taking the meds my doctor pushed—this was a big mistake.

My endocrinologist wanted me to have a 2nd zoledronic acid infusion in November 2022, one year after my first infusion, and I decided against it, and instead one year to the date of my one and only zoledronic acid infusion, at my request, I had my BTMs (bone turnover markers) tested—my endocrinologist should have order BTMs prior to prescribing osteo-meds for me but he failed to do this.

The results of my BTM labs showed that I do not have high bone turnover. Granted, bisphophonates have a long half-life and stay in one’s system for years, so there was always the possibility that the bisphophonates were the cause of this; however, in December 2023, I had my BTMs tested again and they still show that my bone turnover is not high.

My endocrinologist pointed out after my first BTMs came back that my osteocalcin was at the very low end of normal, which is an indication of low bone formation. When I got home I researched osteocalcin and GUESS WHAT people with hypothyroidism often have lower osteocalcin levels additionally bisphophonates lower osteocalcin!

Osteocalcin is super important—people w/ type 2 diabetes have lower osteocalcin levels and I think I’ve read that there is some brain / osteocalcin relationship.

You are wise to question taking bisphophonates. Go to betterbones.com and on that site search for testing for osteoporosis (or something like that). Dr. Brown provides a list of tests that you should at least consider prior to starting meds.

If you are still menstruating, you can potentially build bone naturally—it can be done post-menopause, too, but it’s more difficult.

One DEXA scan does NOT indicate that you are actively losing bone.

A -2.5 t-score is borderline osteopenia and there is the potential that you DEXA scores aren’t exactly right so you may only have osteopenia.

Bisphophonates work by slowing osteoclasts, they do not increase osteoblasts, meaning they don’t “grow” new bone. If you have low bone turnover osteoporosis, bisphophonates, in my opinion, aren’t the answer.

Lastly, have you been tested for Celiac?

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