Hi, i was on ibandronic acid from feb 21 and in april 23 after months and minths of severe pain from foot to groinmy left femur just snapped. I didn’t fall, i just took a step and crack. The pain was unbelievable.
I was taken to hospital where a broken femur was duagnosed. I had an operation to put rods and plates screws in. The following morning the consultant came and told me xrays showed that my right leg was going to break too. These were a direct result of biophosphonates. I had stopped the biphosphonates in February because me dentist referred me to maxofacial because they spotted necrosis of the jaw caused by biphosphonates.
I had had dexa scans, which were very good. No osteoporosis or ostepena. I had mri showing arthritis which i was aware of. No exolanayion for the months of oain. But apparently ive been walking on a fractured left remur for 5 months.
I am on the mend now, gone from wheelchair to one cane.
I worry each day that another bone will break somewhere. I have been told they dont know how or why it happens. And that it normally affects jaw and femur/pelvic regions due to big bones snd lots if blood being there.
Long term use ! I was only on it barely 2 years.
Has anyone had a similar problem. I do worry it would happen again.
They say they will have to do something in the future as letrizole thins bones. But in meatime ill get dexa scans.
Thank you, and best of health to you all
I’m so sorry this happened to you but I have read it’s a risk factor. Did you take a pill everyday? The longer you’re exposed the more your risk factors increase.
I also am really sorry to read this - you have my best wishes. The fear of jaw necrosis was a major factor in my decision to constantly decline bisphospsh, but some medics do put the pressure on and the fear in. I wish you better days ahead.
Gosh, what a horrific experience! I am so sorry to hear that you have suffered so much as a result of these drugs. I had my first infusion a couple of months ago after being persuaded to do so by the medics. I live in fear of these side effects. Apparently the femur fracture is a very rare side effect, jaw necrosis is more common. It sounds as if you have been incredibly unlucky. It’s good to hear that you are getting better. xxx
Thank you, yes i took a daily tablet first thing in the morning. No food for 5 hours or 1 hour after food.
I started it in feb 21 and this happened before the end of 22 with the jaw and april 23 with femur
I dont think it was a long time considering people are prescribed it for years.
I was aware of the jaw aspect, i had to attend the dentist get my teeth all checked and signed off before i started the treatment.
I never knew about the femur/ pelivis danger it was the surgeon in hospital told me after the fact.
Had i known i would have thought twice about taking it.
Hi, yes a pill each day. First thing. On empty stomach.
I was only on it for 2 years. And although i knew of the jaw possible issues. I knew nothing of the femur issues.
Thanks
Thanks, yes ive been unfortunate. I wasnt aware of the femur issue. I had been in the most dreadful pain from leg to groin for 5 months. Unbearable, i had deca scan and mri. No one picked up on this until it broke.
The orthopaedic consultant told me it was related to biphosphonates.
I hope others are made aware.
I knew the pain in joints was the meds but not that it would break major bones.
Made me sad.
Thanks
Yes i had to sign the forms with oncogy, and the form signed by dentist
Ive come a long way. My first issuecwas that chemotherapy has damaged my lungs causing pulimonry fibrosis.
Learning to cope wirh that and getting back on my feet ( to coin a phrase) !nd my leg just snapped underneath me.
Yet dexa scan showed no osteoprosus or ostepena, and mri showed arthritis.
Its been bad luck all all round. I pray it doesnt happen to anyone else.
Ive been oerhaps naive in trusting and foung everything i was told to. I just wanted it finshed, over and done with and away.
Still.coping with rotten letrozole symptoms.
But ill keep going. I love my famiky, znd i have my faith.
No it wasn’t a long time. I’m so sorry it happened to you. They are rare side effects but I will say I have a friend who is breast cancer survivor refuse to take biphosphonates because of it. She has osteoporosis though so it’s a gamble either way you look at it. I decided to take the risk and take them. I hope they can find a way to correct what’s wrong.
I had a local wide excision of a small tumour and precancerous cells in November 2023 and have recently had radiotherapy (10 sessions, 5 to whole breast and 5 boost to tumour bed). I also had sentinel node removal and all clear. I was offered chemo and told to have bisphosphonate treatment given I was over 60. I decided to get a second opinion privately as I had a rare (and less aggressive) type of Triple Negative Breast Cancer (apocrine) and the limited research I could find said chemo had the same outcome as without it. My private consultation with The Royal Marsden advised unequivocally against chemo and bisphosphonate treatment as my tumour was small and had not spread.
I have recently been having acupuncture for the return of menopause symptoms and the practitioner advised that I had had a good call to avoid bisphosphates which were a by-product of bleach production!! So glad I swerved that one. I too had recently had a Dexa scan and no signs of osteoporosis or lack of bone density. My advice is do your homework, ask questions and challenge as everyone is different and often the treatments offered are not always necessary.
Hi. I can sympathise. Sorta same thing happened to me. I have secondary bc and was on bisphosphonates for about 8-10 years then I was told that results had shown increase in bone breakages etc and I stopped receiving these immediately.
After complaining of a limp for 6 months to my oncology team I eventually went to my gp who sent me for a next day X-ray and a bone scan within 2weeks. Turned out my femur was almost fractured through and I was in hospital within weeks for a pin, screws etc. turns out the femur completely fractured during the op. My right femur is showing signs of being affected but it’s a “wait and see” with it. I was on crutches 2 weeks and sticks 2 was but walking normally after 7 or so weeks.
I have also had to attend the dental hospital to have 2 teeth removed…they just broke up one day. I have osteonecrosis in my jaw and it’s being monitored now.
I hope you get all your mobility back. I have just returned from a week in New York where I walked my legs off lol. Xxxxxx
Ps
The nhs have been fantastic. I can’t praise them enough BUT the only thing that annoyed me a bit was that I found out the orthopaedic doctors had known about the bisphosphonate issues years before but this knowledge didn’t reach oncology doctors for around 7/8 years! How does this happen? Once the connection was made surely anyone prescribing the bisphosphonates should have been informed?!
Thank you for your reply, i am not alone then.
They try to give me the impression its very rare, i had no advice before hand about femur. Just possibility of jaw necrosis !!.
But the consultants in orthopedics in Edinburgh knew right away what had caused it.
All the best regards to you. Stay well
My best advice is not to have bisphosphonates if at all possible. When I read about the medium to long term side effects I decided there and then I wouldn’t have them. In the end the Royal Marsden said I shouldn’t have them anyway so all good.
I later was chatting to my acupuncturist about this (just generally) and he said did you know that bisphosphonates are a bi-product of bleach production!! Definitely not for me even if they had said I should have it. However, I think everyone should research and ask questions of medics etc, challenge the need for any treatment if it doesn’t feel right and then decide what is best for you. Good luck xx
I’m having a time after one dose of Zometa. The evening of my infusion I felt very ill and experienced lymph node swelling and lung discomfort, leg discomfort. I haven’t felt right since the infusion and shortly after have not been able to walk without a walker. Been using a walker to get around for three weeks now since the infusion. I also have the numbness and tingling in my fingers but don’t know if that’s from the zometa or using the walker. My whole body hasn’t felt right. Muscles, joints sore, etc. I’m hoping these symptoms subside. Anyone else have such an experience? I don’t plan to take it again.
Hi my biphosphonates were ibandronic acid a daily tablet . tablet taken first thing in the morning, on an empty stomach and not to eat for an hour.
Unknown to me this was damaging my bones which were ok. Had dexa scans which showed no osteoporosis or ostepena. I got within 2 years necrosis in my jaw and my femur snapped and my other one was fractured.
I has surgery to repair both. I stopped taking the biphosphonates immediately when i wS told to.
I went down the tablet route because i didn’t want infusion put in my body. When it was on for 3 month i couldn’t do anything about it. Whereas i thought with a tablet i could stop.
I took a bad reaction to chemo and didn’t want the same to happen.
But its up to you to do what suits you personally, unvolve your oncology team on how you feel.
Most people are ok with the biphosphonates i believe.
Wishing you all the best
Hi, about the numbness and tingling in your hands, that could be a sign of very low calcium levels. I would certainly be talking to my BCN about side effects you’re having, and if you’ve not had a bone profile test ask for one to be done; low calcium can be serious if not corrected. Hope things improve soon
