Has anyone else decided not to take the medication after diagnosis of osteoporosis? I have borderline osteoporosis and can’t decide whether to have medication or not.
medication or not!: Has anyone else... - Bone Health and O...
medication or not!
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Grayson17
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I have the same question… looking forward to hearing from others!
I was diagnosed with osteoporosis in 2015 (at the age of 55) and decided not to take any medication. I’m not sure I made the right decision but time will tell.
I carried out a lot of research. I am petite in stature and of Asian descent. I read how Chinese women who are petite and also have osteoporosis when bone mass is measured via a DEXA. However, their bone strength is good. It’s not just about bone quality but also bone strength.
The DEXA scans compare bone quality against Caucasian women so again don’t take into account slight Asian women.
More importantly, the medications offered in themselves cause horrendous side effects one of them being rebound fractures. The first line of drugs offered work by building bone on weak bone, thus reducing the overall strength of the bone. Once on these drugs, we are on them for life!
I hope the above makes sense and I reiterate, I don’t know if I made the right decision…
Hello.
I had the same dilemma about 6/7 years ago… I was totally shocked about the diagnosis and then I was expected to take medication that would, quite possibly, have side effects that I didn’t want. I refused, after doing lots of reading.
After doing my own research, I discovered I had hyperparathyroidism ( nothing to do with your thyroid) which can cause /contribute to osteoporosis.
You might want to have a simple blood test to check this.
Anyway, I do tend to avoid taking medications, unless absolutely necessary (and I know that not everyone has a choice in this and I have been lucky so far).
I have declined the treatments up to now and, like Mistydawn, I hope I’ve made the right decision and time will tell and I may regret it in the future, or change my mind… but I’ve so far had these years without the drugs.
Good luck with whatever you decide… it’s tricky…
Regards,
Fran 😉
Out of interest Fran, have you had any fractures in the 7 years since you were diagnosed? Also, do you know what made them do a test for Osteoporosis?
It doesn't seem to be a general test that they offer so I'm wondering if you'd share why you had it.
Hello 😊Yes, of course!
I slipped on a banana skin ( that someone had carelessly discarded 🤦♀️) and they discovered, through an x- ray, that I had fractured a bone in my pelvis ( I had never broken a bone in my life before!)
From there, I was told I had osteoporosis (Dexa scan)and the hospital staff practically started writing out a prescription for some drugs almost immediately!
I did lots of research and went to my GP to ask her if I could be tested for hyperparathyroidism ( a simple blood test) and she agreed (although she had no idea of the link and was very glad I told her about my research).
It turned out that I had this condition and I saw a specialist (again, one of my choosing after lots of research), who said that I needed a small operation to remove a parathyroid gland (remember, this is nothing to do with the thyroid). I had never had an operation before!
He also told me that, no amount of medication would have done anything to help the osteoporosis, since it was due to this!
I hope this is of some help to you.
Fran 😉
It is of great interest. It's only this last few days I've picked up that there's a link between the parathyroid gland.
I do use systmonline with my surgery but although I've had loads of blood tests I can't see one for that in my results.
Is it a fasting test?
I'll see if my GP will let me have one.
Hi. No, I didn’t need to fast but, as I say, I did have to request it myself… it wasn’t offered as a routine test.
I believe that it’s not a common connection, but it’s good to know how your parathyroid glands are anyway.
Fran 😉
Diagnosed 12 years ago. Never taken medications - too many nasty side effects. I use diet, Algaecal and occasional Strontium Boost, do a 'Bootcamp' physio lead exercise class, yoga and Aquagym. My scores have hovered around the same - some a bit better some a bit worse - for most of that time, except during lock down when they all got worse - I'm 71 and one is said to lose 1% bmd per year so I feel I'm doing OK. No fractures.
I have to decide whether to take any medication. I'm 80 yrs old. I've read so many conflicting experiences that I'm finding it difficult and was going to ask exactly the same question you have ! Will be interesting to see what other people think.
I decided not to after doing lots of research and other people feelings about it, to help make your own informative decision. I personally avoid medication as much as I can.
A Dexa scan diagnosed osteoporosis after falling and breaking my shoulder. There was a discord between the Dexa hip and spine result ( and as I am fit and active) before taking the meds I decided to have a Rems scan and private consultation. The Rems scan confirmed the diagnosis of Osteoporosis and actually the score was slightly worse but with no discord. However the actual strength of my bones was very good. I am a very slight 63 yr old with a low BMI- which seems to be the pattern with a diagnosis of Osteoporosis. And actual bone strength is not measured on Dexa .I decided to not take the medication and eat and exercise as healthily as possible.Time will tell whether I have made the right decision.
It's interesting you mention being light low BMI seems to go with OP, it was one of the reasons it hadn't occurred to me that I'd be at risk as I've always been heavy. So in theory my bones have been weight bearing strengthening every time I move about, or do anything for many a long time.
Unfortunately it hasn't worked in my favour!!
Now if I lost weight is it of any benefit?
It's a conundrum!!😅
It is indeed a conundrum! I feel that there are a lot of questions not answered and that concerns me. The osteoporosis drugs do have a lot of side effects and before I take anything I want to be totally satisfied that it is in my best interests. The fact that a disproportionate amount of fit women with a lower BMI are being diagnosed with Osteoporosis should be raising questions. Perhaps a Rems scan would be worth considering? I found the scan and consultation to be incredibly helpful, reassuring and enabling.
the oral medications caused gastric problems, so I went for quite a few years with nothing. I fractured my arm badly, and the surgeon said it was just in there, so I metal implant now. My is ‘severe’. So I went on to have Teriparatide injections. I had to stop after seven weeks because the side effects so bad. I had my first Prolia injection two months ago, and I’m still suffering. The constipation was serious., And my gut is still not sorted. I also got a urine infection. So I think I’m pretty much decided to discontinue (I’ve only had one Prolia). I’m thinking that at 75 years old It’s more important to have quality of life now, rather than look into the distant future. I exercise a lot, and have a good diet. Perhaps if I end up in a wheelchair because of my osteoarthritis., I might think again.
All these medications I’ve had have made me feel extremely unwell, and not just at the beginning. I’m obviously very sensitive..
I was diagnosed with osteoporosis 20 years ago ,I am 73, tried actonal for a few months but discontinued due to side effects ,not taken any medication since and have not fractured/broken anything I just take calcium and vit D, exercise and healthy diet.
I have no faith in the Dexa ,it compares your bones to that of a 30 year old athlete which to me sounds like a scam. Note that we all seem to be petite so never had big bones to start with and getting on in years bone loss is actually a natural part of aging ,I don't believe there is a drug to cure that.
Yes, often we forget bone loss is totally normal as we age. I was diagnosed at age 58 and take no meds and never have. I currently am in the severe range but have not lost any more height than a normal woman my age without osteoporosis. I have friends who do not have osteoporosis who have lost more height than me and have fractured and fallen. Many of these folks also have chronic pain in their bodies. That said, I am petite and am beginning to wonder if I was just born this way and my scores are not a true representation of my bones. I do not feel comparing my bones at age 70 to a 30 year old makes sense, as anyone past 60 years of age knows aging brings a decline in your body regardless of how much you work out and eat right.
I took risedronate for a year, but then gave up due to side effects and have taken nothing else for the past 9 years. My scores had got a little worse by the next DEXA scan, but I've maintained them at about the same level for the past 5 years, possibly longer. I had DEXA scans in 2014 and 2018, REMS scans since 2019, so it's difficult to compare, but my total hip result has been more or less the same since 2018, neck of femur worsened very slightly since then, but unchanged since 2021, spine score had errors on DEXA, but improved from 2019 according to REMS scans. I've tried to eat healthily and exercise regularly (both with varying degrees of success!), and take Vitamin D (enough to keep my blood level over 100nmol/litre), K2-MK7, boron, zinc, a low dose of strontium citrate and, due to strontium competing with calcium, a low dose of calcium citrate. This year I've added bovine collagen peptides. I get magnesium and plenty of protein and calcium through diet. Magnesium supplementation is recommended, but I've yet to find one that doesn't make my IBS worse.
Have you heard of Wild Nutrition?Their Magnesium and all their products are food grown rather than using synthetics.
I've not got a clue whether it is making any difference but I just like the thought that it's food grown. It is more expensive than over the counter at Supermarkets etc, but it has awards for safety and purity, it may be worth looking them up.
I subscribe so it comes every month
I was in a similar predicament nearly 3 years ago, following discussions with both my GP and ROS nurses I decided to wait a further two years and see what the result of my next DEXA scan would be. Unfortunately over that period my bone density decreased by 7%. Normally you would expect a decrease of 1-2% a year. I’m now taking Alendronic acid….I can’t help thinking that maybe I made the wrong decision.
Hi. Many of us decide not to take medication. Long term medication for other things was the major cause of my osteoporosis in the first place. Dexa scans are not accurate. I'm 70 years old, have had vertebral fractures and still refuse medication. In my case I had severe osteoporosis at the point of diagnosis, many years ago.
A few weeks ago I fell heavily backwards on hard concrete yet had no fresh fractures. The hospital told me my bones were so osteoporotic that the quality of the xrays were too feint to see clearly.
There are safe ways to take care of our bones. I made a lists of everything which helps and harms bones, then changed, stopped or added in whatever I could. Always best to research yourself, you are worth it.
If you can find my previous posts I have detailed some of these changes. One example is, I will not drink fizzy drinks other than Appletize or fizzy water.
There is no guarantee that the medications are effective and the figures given to market them are inflated.
It is your decision to make and you are wise to make your decision carefully. You tube and google may help.
Good health to you!
Di Doh
DeannaAlphi where can I find your previous posts? Could you send it to me by email?
Hi. Sorry I don't know how to find them or send them on if I did find them. Maybe the modulator of the site can help?
If you click on DeannaAlphi username you will see one post they have written 6 years ago and click on Replies and you will see all their replies to other postings. Is this what you mean?
That's very interesting. I had read about fizzy drinks ie Pepsi Max, Diet Coke, I was addicted to it in my 40s as a way of keeping my weight down, it has no calories and the bubbles make you feel full. Oh what a FOOL!!
Apparently there is research that proves that it really does leach the calcium out of bones.
I can't make out why it's not all over the papers, they're making a fuss about us eating porridge, they would be far better putting health warnings on the fizzy drinks cans!!
Hi I am just like most of you so unsure about the medication recommended by my doctor and osteoporosis specialist. I was on alendronic acid as my score on my spine was -4. Started them for a few months but decided to stop. My stomach was really swollen and did feel as if it had a negative impact on my bowel. Was advised to start the eventy injection for 1 year but after research I have decided not to take any medication. So I am hoping that I can keep myself safe and healthy by exercise and healthy eating.
I was diagnosed 12 years ago. Decided not to pursue meds after tons of research. Like most, I was living in fear after diagnosis. My mom did all the protocol with the meds and I watch her still today, at her age of 92, fracturing, falling and with bad Gerd issues. She also developed a hump and lost 5 inches. She receives annual infusions. I didn't want that life. That said, I eat a healthy well balanced diet, do a session of pilates, yoga and weight training 3 times per week, walk 2-4 miles per day, focus on proper body mechanics and balance to avoid falls. I take Vit. D daily. I get calcium through diet. I have not fractured (I'm 70), have only lost the normal height for my age for folks without osteoporosis. I am not big boned and maintain a healthy weight. My focus is on strength, balance and avoiding falling. I have never taken any meds for osteoporosis and do not have any pain. I hope my decision is fine for my body but only time will tell.
Did they test you for OP because your mother has it?
No. I went and got a scan because I take a preventive approach to my health care. My insurance covered the scans. I had my first scan at age 50. My mom followed the protocol of taking op meds if you were pre-osteo. That was the protocol back then. She actually did not reach OP status until 85 after being on OP meds off and on for over a decade. Once she stopped taking them, she immediately began to fracture, fall and developed a hump. I on other hand, was diagnosed at OP at age 58.
That's interesting. Are u in UK?
No. In the USA which has been pushing meds very heavily since the development of the Dexi Scan machine. My mom followed the protocol for osteopenia back in the early days. Mom was off meds and began to fall and fracture. She had her first Recast infusion at age 90. She still fractured both her wrists and thumbs since then but at least it stabilized her shrinking . She goes for another infusion next month. Watching what happened to her with the meds is why I'm not open to them at this point.
Ok, thanks for answering. I guess it's quite different here in the UK as medical private practices are still relatively scarce except in big cities.
The majority of the population would use the NHS .
So we haven't really got a choice of what we're offered here, but it stands to reason that they wouldn't push/offer us anything that was ineffective or cause harm - as that would cost the NHS more money in the long run.
The criteria here is generally very strict what they'll use.
Best of luck with your situation and health. If I could go back in time, I would have started immediately when I had osteopenia to strengthen my bones through nutrition, diet, body mechanics, pilates, yoga, strength training and balance. I do all that now and am pain free even though I am in the severe range for osteoporosis. I have no fractures either. That said, I am not closing the door on meds in my later years and I hope that new research and technology will create new drugs with little to none side effects. Lots of hope in stem cell and the new quantum computer which will assist in hopefully many new medical breakthroughs. Best of luck to you and stay positive!
Grayson17 I had the same concern 6 months ago when I started with Risedronate, due my doctor influence. But I still thinking about stop next year.
I went to have a private assessment after being told I should take meds by NHS. I got a different story so now am using LIV daily, careful with diet and take a recommended supplement.
I don’t have a high fragility score, I’ve no compression fractures so will continue as I am. If I progress to have compression fractures I may reconsider.
I have several other chronic conditions which mean I have an already heavy med toll on my body so if it’s not life preserving or life enhancing I am not going to be taking anything, even Calcium.
Interested to read all these comments. In general when people were diagnosed with osteoporosis how bad was their score? I took Prolia from Mar 22 to Sep 23 (4 injections)My TScore was 3.2 when I was diagnosed in 2022. I've taken no treatment since Sep 23 but now I must decide whether to go back on treatment after suffering 2 vertebral compression fractures in last few weeks.
I was -2.8 spine and -2.2 hip. The doctor prescribed AA and Adcal. I only took the AA once as the side effects were awful and after 2 years I've stopped the Adcal and increased the calcium in my diet. I take vit D and multivitamins, exercise lots and so far not broken anything. Interesting that a lot of others are petite like me 🤔
I don’t think I would take medication for borderline osteoporosis. Exercise and supplements, and HRT, if appropriate ,would be my choice in that situation.
But that was not my situation.
I’ve had osteoporosis for many years( from my 40’s)…. I took Fosamax for about 7 years several decades ago..
My lumbar spine score was -4.3 about a year and a half ago , the same score as my father’s was when his vertebrae started crumbling without falling.
I completed a year of Evenity injections in October and am following up with weekly Fosamax pills. My lumbar T score is now -3.00
I also found out that I was excreting too much calcium in my urine( 24 hour urine test), and am now on medication and potassium supplement to manage that .
Make sure you get a very thorough work up…
I read everyone's story and I'm like a Reed in the wind, I took AA for 5 years with no problems, it didn't change my score of - 4.5 spine and - 3.5 hip, I've now been advised to have teriparatide, I really don't want to but I'm afraid not to.....I'm quite healthy otherwise, although I have had some painful episodes when I've had fractures.....none since August last year......I think I'm going to give it a go any problems I will just stop,I just don't want to be a year down the line with worse problems,my OS nurse says teriparatide is the blue ribbon of treatments I can only trust her judgement.
It’s a hard decision … good you found a provider you trust
Was diagnosed with osteoporosis after slipping and fractured my elbow nearly five years ago. Had a DEXA and assumed everything would be OK so was very surprised when it came back showing my neck T score was over the limit at -2.7. I was told to take Alendronic acid and Vitamin D, which I did really without thinking too much. However, having researched more and spoken to other people realize I was too quick. So, my advice would be, as you are doing try to find out as much information as possible and do not like me just follow blindly what you are told. However, you do need to balance what you hear as in most cases people who have a bad experience are generally more vocal.
I’ve been diagnosed with Osteoporosis. As long as my FRAX is less than 20% I don’t take any medication. I changed my diet 8 years ago and exercise a lot. While jogging I fall down from time to time - no fracture so far.
Here's my story: healthunlocked.com/pmrgcauk...
Similar - see below? Except, I cannot take Vitamin D, or any food high in Vitamin D because of the side effects. I’m told that’s impossible to overdose on Vitamin D! I’m a blue-eyed redhead. I discovered recently that blue-eyed redheads need very, very little natural light to maintain their Vitamin D levels because they’re adapted to synthesise Vitamin D very effectively in their livers’. My Vitamin D levels are never low when they’re tested.
That's fascinating. Shows an adaptation to living at a latitude with low access to sunlight!
Interesting question! I’m a 76 year old woman, and in 2002 was diagnosed with osteopenia, which two years on had developed into osteoporosis, my lower spine was -3.5, hip -2.5. My GP at the time did point out that it was possible that I’d always had a low bone density. I was still exercising a LOT at that point. I was prescribed Alendrotnic Acid, which, possibly due to severe Crohn’s disease did not suit me, so I stopped taking it after a month. I’d always taken a high dose of Solgar Ester C, and at that point I also began to take Vitamin K2.
Over the years I’ve had fairly regular DEXA scans and they’ve varied. Sometimes a bit higher, sometimes a bit lower, so it can vary. In 2015 I had a severe flare of Crohn’s and a second resection, then over the next nine months, both hips replaced. Obviously the next DEXA scan I had, they couldn’t X-ray my hips, so they did my elbow and spine in which I have Degenerative Disc Disease.
During the past two years I’ve fallen over, heavily, crashingly at least three times. Once I fell down an entire flight of stairs. Last week I slipped in the mud outside, (still moving as much as possible), both feet shot about two feet up in the air and I landed on a block of wood with my elbow and ribs on my left side. Although I scrambled to my feet, and everything seemed to be working, I decided that this time I would go the A&E, where they x-rayed me, then CT scanned my head, which I’d also hit, and my entire torso.
NOTHING broken! I’m told I’m just ‘very lucky’!
Just diagnosed about 3 weeks ago. Done a lot of research in a short time. I am 56. Been on steroids but also post menopausal by a few years. Not taking meds but taking Vit D with Vit K and Calcium, Multivitamin, Bone broth, 6 prunes a day (apparently there are studies to show that helps), walking a bit more than usual and talked the docs into Estrogen and Progesterone (HRT) which again I have heard can help. We will see! Need to find some safe exercises to do. Still working on that one. Considering getting one of those vibration machines. Really expensive though!
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