Meds and osteoporosis : Years and years... - Bone Health and O...

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Meds and osteoporosis

59 Replies

Years and years ago diagnosed with osteopenia. Tried pills for it but my stomach couldn't handle so doctor said injections...2 times a year fir 2 years. I felt desperate so I agreed, stupid me should have researched it more. Well I still went to osteoporosis AND lost teeth. Found out those injections caused bone loss in jaw. Just had another tooth pulled due to infection and now have to deal with treatment for bone loss. Expensive and mentally challenging.

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59 Replies
Fruitandnutcase profile image
Fruitandnutcase

I am terribly sorry to hear what has happened to you. Especially as you took the OP drugs you were advised to take. ‘They’ say problems with your jaw are very rare but if you are the one it happens to it doesn’t matter how rare they are and I know from the experience of a family member it’s quite possible to take osteoporosis drugs and carry on crumbling which is very upsetting. So sympathy to you and good luck for your future.

in reply toFruitandnutcase

I love your name in this...very original. And thank you for kind words of support port on this site has helped me a lot.

Margo profile image
Margo in reply to

Have you considered seeing a good nutritionist, had you done that at the start you would not have needed any drugs. Still now a nutritionist could hep you avoid pharmaceutical drugs which will no doubt cause you more harm and won't solve the problem. I turned around my osteoporosis with diet and supplements, I was diagnosed with osteopenia at 46, I am now 71 and have NEVER taken any drugs, I am careful with my diet and take a host of supplements, I am pretty fit and my bones are fine.

Raleigh59 profile image
Raleigh59 in reply toMargo

Do you believe in osteostrong?

May I hear all your supplements and brands?

in reply toRaleigh59

I chew 2 calcium gummies a day. No specific brand just 1 without alot of sugar. I drink oj with calcium daily and eat a yogurt daily. That's about all I can tolerate.

Margo profile image
Margo in reply toRaleigh59

I have never heard of Osteostrong, sorry depends what is in it and where it is made whether it will help you.

I take Vitamins D 10,000 Vitamins K2, fish oils, Vitamin C 2 grams daily, Magnesium x 4 daily, gluten free diet, avoiding cows dairy. I chop around and change the frequency and amount, no particular brand but good quality supplements always.

in reply toRaleigh59

I've never heard of it

CDreamer profile image
CDreamer in reply to

You need various other micro nutrients such as VitD to ensure the calcium goes to your bones. It is worth getting nutritional advice.

I was warned by both my dentist and GP about bone loss in jaw so I had a lot of dental work done prior to taking meds (oral not infusion). Even then it was too much so only took for about 4 months. So sorry what happened to you.

superbones profile image
superbones

You are now the third person I have heard of in a very short space of time who has lost teeth from infusion. This freaks me out as I can't take the biphosphates either and waiting to hear what the next step is.

Raleigh59 profile image
Raleigh59 in reply tosuperbones

I can’t take bisphosphonates either and I am on daily injections at home.

Rocknlily profile image
Rocknlily in reply toRaleigh59

Which drug?

Raleigh59 profile image
Raleigh59 in reply toRocknlily

Tymlos

Rocknlily profile image
Rocknlily in reply toRaleigh59

How have you tolerated it? How long have you been on it? Thanks

in reply toRocknlily

I took prolia injections as recommended for 2 years. Damage was done

Raleigh59 profile image
Raleigh59 in reply toRocknlily

I bc am in the third month of it. I don’t like it because it makes my pulse increase for an hour.

Rocknlily profile image
Rocknlily in reply toRaleigh59

Sorry to hear that. I already have that with my hypotension. Such a shame to hear of all the side effects with these medications.

Rocknlily profile image
Rocknlily in reply tosuperbones

Ditto! Someone in my family had the jaw and teeth problem. Can’t take biphospates and doctors are really pushing Prolia. There are 3 warnings in it that apply to me. I’m researching first.

Raleigh59 profile image
Raleigh59 in reply toRocknlily

Seems every Osteo medicine has the jaw risk

in reply toRaleigh59

None more than injection

Raleigh59 profile image
Raleigh59 in reply to

I think the difference with oral medicines you can do what you want like every other day if you have daily pills . Or in my case my dr doesn’t make me do full dose of daily injections but nonetheless all the medicines are high risk I think that’s why m m any people refuse them

strongmouse profile image
strongmouse in reply tosuperbones

I have just started my second lot of three zolendronic infusions. (I can't tolerate the tablets). I'm in my early 70s and diagnosed with osteoporosis and watched my mother cope with osteoporosis. She lost two inches in height, develeoped anyklyosing spndylitis and had arthritis, but walked daily.

Having other health issues myeself, including multiple food allergies, and ME, plus side effects of operations which affect my mobility, I am happy to do what I can to mitigate the affects of having osteoporosis.

I am sorry to hear of your problems Bucketlady. Not sure how many injections you've had? Certainly worth taking nutritional advice and exercise at the osteopenic stage.

Yes, it is always worth weighing up the risks and benefits of treatment, preventive medication. I have spoken to my dentist about this and she said it is rare for it to effect the jaw. But if you are one of the 'rare ones' it is pretty horrible.

in reply tostrongmouse

4 injections over 2 years. Messed up my mind I mouth

strongmouse profile image
strongmouse in reply to

Goodness, that isn't many. I see my dentist every six months for a check up, Were there any indications beforehand that there were problems?

CloudyD profile image
CloudyD

Hi. So sorry to hear of your experience but thank you for writing it, which has helped inform. Wishing you a better outcome than you currently have with your treatments.

Raleigh59 profile image
Raleigh59

My doctor said everything in life has risks and we weigh the risks with the rewards and we only do that with the information we had at the time.

The pills for osteoporosis also create jaw necrosis bone loss.

The doctors feel it’s low risk but that’s true for every shot and every medicine.

I take daily injections at home - how would anyone know when this bone loss in the jaw is occurring. Seems like you had no idea it was occurring.

This too is what happens with cancer- people have no idea it’s occurring.

My dads doctor so the doctor was the patient and went to the best cardiologist who misdiagnosed something which led to terrible problems. My dad who was visiting his doctor in the hospital said “ this happened to you! How can it happen to you?!!”

Hugs to you but how do any of us know what to do with this disease?

Are you doing anything now for the disease or did your bone loss occur after you stopped the injections?

in reply toRaleigh59

Ur doctor full of crap and getting paid by pharmacy companies to sell their stuff. Be ur own patient advocate and do research and decide what best for u. You know doctors get kick backs from pharmacy companies? They do.

Raleigh59 profile image
Raleigh59 in reply to

How much kickback do they get

in reply toRaleigh59

A lot of perks ..I worked in md offices. Dinners, gifts, sometimes money.

Yes I agree all meds have risks..I think doctor should have explained all and recommended I see dentist first. He did not... so...here I am.

Bongomad999 profile image
Bongomad999

Hi I research it on this site, as I have osteoporosis of the hip, was told I had to go on injections , Alendronlic Acid tablets caused acid reflux, and stomach errosives they stopped the tabs,I cancelled appointment for the injection,

After I read about keeping up with injection and in so people it made them worse on getting fractures,

I look after my 90yr old mum , I feel ok, I heard that the injection can cause problems with your jaw and decided not to have it My Dentist was reluctant to treat me if I went ahead with the injections Glad I didn't. X

Rocknlily profile image
Rocknlily

There just has to be a better way. I have osteoporosis and they are pushing the Prolia big time. I’m waiting. There are 3 warnings in it that apply to me, they still push it. The teeth and jaw issues seem more common than they let on to believe.

in reply toRocknlily

B 4 u agree to injection see dentist. Take their advice..u don't wanna be in my shoes. I not overly vain woman, but I vain enuf not to b toothless.

Rocknlily profile image
Rocknlily in reply to

Supposed to get cavity filled in January (minor, beginning). Have other con. I messaged you in chat.

in reply toRocknlily

Sorry guess I missed it, send again please

in reply toRocknlily

I never had cavity issue, just teeth falling out rotting from jaw bone.

in reply to

Me too. Lost 4 so far, all in back. Now have to go for periodontal treatment to save rest.

Bongomad999 profile image
Bongomad999

Hi everyone I was asked by the Doctor to go and see my Dentist before going on the injections as i would need to have my teeth checked first,I was worried about having injections , I went on to have the bloods they wanted ,then I phoned up to say I've changed my mind ,

The specialist said its pointless giving me the results of the bloods as I had cancelled the treatment .

So when I visited my Dentist I told her that I had research the injection, and I had decided not to have it , Her reply was that she was glad because she would of had to take some of my good teeth out, before the treatment was started,

in reply toBongomad999

Wow... you handled that well. As for your doctor get those lab results ....they are yours and they have no right to not tell you.

Adlon57 profile image
Adlon57

Yeh! I have a collapsed rib cage structure, side effect of meningitis aged 10, meant I have no six pack to be proud of, don't walk around bare chested🙄 I have long term epilepsy, after 50 years of the condition, 400 + seizures, broken or fractured every rib in my body! Double seizure in 2018, meant irreparable brain damage, [terminal] Anyway, I was 'diagnosed' with PC in June 2021, and was given hormone injections [Decapeptyl SR] which severely worsened my rib cage, ribs very brittle, life threatening! Did I have PC at all? still getting regular PSA's, IF a particular oncologist had 👀 properly at my medical cv, she might have noticed there 'might' be a chance of reactions to my rib cage🥴 Strange that particular oncologist has not come back to me on that🤔🙄😤

ps I was on long term use of lamictal for my epilepsy, my dentist noticed I was loosing teeth from the effects of it, strange last couple of years, since 2018, have not had a filling since then😁

in reply toAdlon57

That is a lot to deal with. Bless you.

Adlon57 profile image
Adlon57 in reply to

Need all the help and encouragement I can get at present, ta Bucketlady👌

in reply toAdlon57

Hang tight. Find another doctor if you need to. Google doctors find someone who can help. See dentist get protocol from them on how to keep your teeth. In this day and age there has to be other ways to deal with your health issues. As for teeth..I don't get cavities either, mine just rot from loss of jaw bone If u in USA, try Mayo Clinic

Adlon57 profile image
Adlon57 in reply to

I can't this is Northern Ireland, politics come first, whether I like it or not, health matters always come down the list, people don't just die over violence over here🥴

in reply toAdlon57

Jeez... that sucks

Raleigh59 profile image
Raleigh59 in reply to

Maybe the roots of teeth rot or the jaw bone decreases in density

in reply toRaleigh59

Jaw bone loses density, tooth becomes loose and there it goes

Raleigh59 profile image
Raleigh59 in reply to

I understand but we take this medicine to increase bone densitY

in reply toRaleigh59

Yes but some medications damage jaw while supposedly strengthening hip bone etc.

Raleigh59 profile image
Raleigh59 in reply to

Ok

I wonder if my medicine Tymlos does that

in reply toRaleigh59

You need to check, my doctor didn't tell me about jaw issues, so I took it and 2 years later was told by my dentist

Musicl profile image
Musicl

Beware also that these drugs, oral or injections can cause a fractured femur. Very rare, but a possibility. My late mother was on alendronic acid. She fractured her femur, from just slumping down into her chair, which led to hip replacement surgery. I have osteoporosis and have been offered the injections but have refused to have them.

in reply toMusicl

Sorry about your Mom. Good thing to stay away from injections.

Musicl profile image
Musicl in reply to

My mother was not on injections. These were once weekly tablets, Alendronic Acid. Best to stay off bisphosphonates altogether, I think.

in reply toMusicl

Long time ago our mothers didn't test for osteo, my mother didn't break anything in her 87 years. My paternal and maternal aunts not grandma's break anything.. so no pharmaceutical companies shall push me Any longer.

Raleigh59 profile image
Raleigh59

I take daily injections at home. I think it strengthens teeth but also carries jaw risk. I think all the osteoporosis medicines carry jaw risk . I don’t think a dentist can predict jaw risk but maybe dentists don’t like any of the osteoporosis medicines bc of the jaw risks and might say not to take any

in reply toRaleigh59

Oh yes a dentist can predict jaw risk by taking xrays. And think of this way... if dentist wants to make money...he will on women who take osteo injections and lose jaw bone mass

Raleigh59 profile image
Raleigh59 in reply to

Maybe they can predict jaw risk if they take x rays every 6 months but if they take X-rays every 2 years, things might not be seen for a while.

I knew a lady she got a 2D x ray for mammogram and it came out fine. She said she would have been charged $80 extra so she didn’t do 3D then 6 months later she found a lump herself. She was plagued by that she had not done the 3D x ray . I think she had both breasts removed .

We all learn later about other options. Would you consider Tymlos ? It’s supposed strengthen the jaw loss from what other medicines have done.

in reply toRaleigh59

Thanks but no thanks..I doubt dental protocols and that should help.

Raleigh59 profile image
Raleigh59 in reply to

Ok yeah I take Tymlos bc this or evenity Is supposed to build home.

Tymlos is a drug you can just stop any day you want. I can see why no shots are better than shots bc they have too much side effects but the tablets have side effects and risks too. If you are not taking anything that Is a risk too after Prolia

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