Alendronate/fosamax part 2

[BrancepethCastle]

In 2014, after taking alendonate for (?) 5+ years, my left femur broke as I walked down a very slight slope. I have a intramedullary pin running from hip to knee. In 2020, on March 3, after not taking AA for nearly 6 years, I stood up to get off the bus, and my right femur broke, same reason. Now I have a pin in my right leg as well. I came home on 23rd March, the day lockdown started, and now I'm frightened to go out even just into the garden. They say over and over again, how safe alendronate is and how rare my reaction was, but I was chatting to a doctor while we were waiting for a meeting to start. Exactly the same thing had happened to his Mam.

[Fruitandnutcase]

You poor thing - what a nightmare, that is just an awful story and then to hear about the doctor’s man on top of that. I can imagine it will take a while to get your confidence back after all that. Have you thought about getting one of those devices you wear and can press a button to call for help? My Apple Watch can do that but you can buy ones that don’t have all the extras on them. It might help you feel a bit more confident knowing you can contact people right away if you have a problem either at home, in the garden or outside the house. Could you perhaps get physiotherapy to help you move more safely, I know when I broke my wrist I was due to go to the osteoporosis physiotherapist for an exercise class for people who had broken bones by falling. If you could get on something like that I’m sure it would be a help, it might even be worth finding a private physiotherapist who is experienced in working with osteoporotic patients to help build up your confidence.

As it was the class never happened because of covid. I started using Nordic walking poles (my husband and I had done a six week course in how to use them a few years ago) so I used my poles whenever I went out and that gave me great confidence especially when I was out in the countryside.

As for alendronic - I stopped that after four months because it really didn’t agree with me - gut problems we’re about the only symptom I did not have - it totally messed with my head is about the best way to describe it! I’ve since turned down infusions because I don’t want to ever feel so bad again.

Thank you for telling your story and I hope things get better for you soon. Covid really was an awful time to get anything wrong that needed medical attention.

[nottowell]

I had a dreadful reaction to AA i was constantly sick for about 3days after taking it and still had a few fractures am having prolia injections now twich a year with no side effects but broke my toe a few weeks ago so neither is a cure

[Arcadia10]

This is a terrible tale but a timely warning of the risk of alendronate causing atypical femoral fractures. From what I've read, these fractures are not as rare as they're made out to be - and you don’t have to look far to find someone similarly affected. A friend of someone I know broke both her femurs while walking through a local shopping centre. She had been on Prolia (I don't know for how long) which also causes AFFs. The frightening thing is that you had the second AFF six years after stopping alendronate. That is a huge concern for me as I have been taking bisphosphonates (Actonel and Fosamax) for 25 months to transition off Prolia, and thought that the problem only occurred while actually taking the bisphosphonates or denosumab (Prolia).

Having both your femurs fracture and having to be pinned must have been a traumatic experience and of course you'd be feeling vulnerable and insecure when venturing out on your own. I'm sure over time you'll regain your confidence. I can relate to how you're feeling as I've had three fractures post Prolia and keep expecting something else to fracture. It's just human nature and I'm sure that the fear will lessen over time if nothing else happens. In the meantime we just have to move forward with our lives and keep our fingers crossed!

I wish you all the best in getting over these horrible events. Thanks for sharing as I suspect that not many people know this can happen so many years after stopping alendronate.

[Mavary]

Hi! Maybe you should be asking why your bones are breaking despite being on medication. Obviously something is wrong somewhere. They may even try you on something different. I’ve not got too much of a problem walking. All my fractures are from my T12 up. Mine stops me doing things with my arms.

Reading through everyone’s tales have now made me concerned. I’ve had seven spinal fractures and have been on Denosumab for nearly if not two years now after being on Terraparatide. I had four more spinal fractures five months into taking Denosumab but have been stable now for about a year year and a half. It’s a bit concerning that I could get more fractures.

I wish you well and hope nothing else happens for you.

[Arcadia10]

This might be of some interest - someone in a similar position. This lady experienced bilateral AFFs 10 years after her last dose of alendronate: sciencedirect.com/science/a...

This is absolutely frightening. You stop the bisphosphonate and as long as 10 years later you can suddenly be affected by it. Why don't doctors warn us of this? More research needs to be done into these medications and their long-term side effects, and doctors need to be educated.

[Hidden]

We do have some information on this condition on the website. strwebstgmedia.blob.core.wi...

[Arcadia10 in reply to Hidden]

Unfortunately this leaflet doesn't discuss atypical femoral fractures which occur AFTER stopping antiresorptive drugs like bisphosphonates and denosumab. It appears from a quick search of the literature that these can occur up to 10 years after ceasing the medication. This is something that patients should be made aware of.

Another quick online search produced a 2020 research paper which says that "These studies suggest that the incidence of incomplete AFF may be as high as 1–2 per 100 patients who have been treated with 3–5 or more years of bisphosphonate treatment." So AFFs while on treatment are not as rare as we're led to believe, and certainly not the 5 in10,000 people as mentioned in the ROS leaflet journals.sagepub.com/doi/fu....

[FearFracture in reply to Hidden]

ROSAdmin2,

Do you have any info on building bone naturally after quitting bisphosphonates. I'm 4'11" and my endocrinologist pretty much scared me into bisphosphonates when my DEXA lumbar t-score showed -3.9. I took Alendronate for 1.5 years and then quit because it was causing issues. My endo then recommended a zoledronic acid infusion, which I had in November 2021.

Note, when I was first diagnosed, I asked my endo about natural ways to reverse osteoporosis and he just said, calcium, vitamin D, lift light weights and walk. Well, I'd been doing all of those things for years so obviously they aren't enough. And when my endo said my bones were "horrible" I felt rushed to act.

Shortly after getting the zoledronic acid infusion, I found and joined this website, and when I posted my height and my DEXA scores, someone immediately reached out to me saying that DEXAs can be incorrect for smaller ppl and that I should look into that.

Eventually, I found Dr. Susan Ott's BMAD calculator courses.washington.edu/bone... and when I plug my numbers in it seems that my bones aren't nearly as bad as the DEXA showed.

I don't intend to have another infusion. I was nervous about taking it in the first place because of the potential for serious long term side effects. Additionally, I want to try what I had originally asked my doctor about, natural solutions. I have found ample success stories of people naturally reversing their bone loss, and I have already taken several steps to set me on that path.

Unfortunately, after having the infusion, I learned that not only do bisphosphonates inhibit osteoclasts but that they also interfere with osteoblasts. What I want to know is how much do they interfere with osteoblasts and for how long? Has having taken bisphosphonates ruined my chances of reversing my bone loss naturally?

[Hidden in reply to FearFracture]

It would be worth ringing one of the helpline nurses as they can give you the information on this. 0808 800 0035

[Kaarina]

My mums femur fractured whilst she was standing outside her porch waiting for a day ambulance to take her to a hospital appointment, nothing to do with osteoporosis. They could not help and sent for an appropriate ambulance. Paramedics had to cut her trouser leg as it had swelled up so much. She had taken herself to A&E on numerous occasions as she was in pain and discomfort. (She had been prescribed AA for years.) My mum was not a person to fuss so she was obviously in great pain. Each time she was told to go home and take paracetamol. She had xrays and nothing showed up. I learned later by doing my own research that often hairline fractures do not show up in xrays. Unfortunately my dear mum never returned home. She died in hospital 4 months later not quite reaching her 90th birthday. Even in hospital they still gave her the weekly AA med. No one listened to me there. In hindsight the terrible damage had already been done so still giving her the AA did not matter one jot.

[Arcadia10 in reply to Kaarina]

That is terrible, Kaarina - I'm so sorry to read about what your mum went through. It's so unfair that she had to have such a horrible experience at her age due to medical indifference and mismanagement. Not addressing the issue of her ongoing pain was bad enough, but to continue the medication after her AFF is appalling. Even the leaflet on AFFs posted by ROSAdmin2 above says that "The MHRA (see Box 1), has stated that if you are unfortunate enough to have one of these rare fractures whilst taking a bisphosphonate or denosumab you should stop taking the treatment unless a specialist advises otherwise." The antiresorptives suppress bone turnover and impede healing. How could they have got it so wrong? You must be so upset about this.

[Kaarina in reply to Arcadia10]

Thank you dear Arcadia, It was very upsetting. I had no idea that her doctor had been prescribing the AA to her for so long. She never mentioned to me she took this drug once a week. I found out when I happened to look at a copy of her repeat prescription and noticed that AA was listed. When I asked her about it, she said she had been on it years. How many years, I do not know. My dear mum died nine years ago this month. I did not know anything about Osteoporosis before I myself was diagnosed with it. Then I started my research.

[Arcadia10 in reply to Kaarina]

That is so sad, Kaarina, that you didn't know about this. People of advanced years were brought up not to be a nuisance and to accept their doctor's word as gospel and it probably didn't even occur to her to get you involved. I had an elderly friend who passed away three years ago aged 90 who asked me to buy him several packets of Panadol one day. When I asked if he was in pain and he replied that he wasn't, I probed further as to why he was taking it. His doctor had told him to - eight years earlier! He just never told him to stop, and dear Noel just dutifully carried on taking it, unnecessarily. That's probably an extreme case but thanks heavens these days we are conditioned to question everything - and if we aren't, we should be, especially where our health is involved.

You must miss your mum very much. I hope the hospital apologised to you.

[Fruitandnutcase in reply to Kaarina]

That is a truly terrible story Kaarina. It makes me feel so sad to read it. Your poor mum - to be sent away from hospital and told to take a painkiller. As someone said that generation are stoic and your mum wouldn’t have gone to A&E unless she was really needing to. Its not really surprising that you didn’t know what drugs she was taking, my 87 year old mother was very independent and never discussed her medicines with me, I knew one was for blood pressure but she wasn’t for discussing it with me although she did say once that her doctor wanted her to take bisphosphonates because her sister had osteoporosis - however she refused! Not sure on what grounds she made that decision other than she said she didn’t have osteoporosis although she hadn’t had a DEXA as far as I was aware.

I think you could say that most of that generation had a different attitude to doctors and would never question the drugs they were prescribed.

I hope the hospital actually learned something from your mother’s sad story and will remember it in future. You always miss your mum.

[Kaarina in reply to Fruitandnutcase]

Thank you, Fruitandnutcase, It was all terribly sad and upsetting. She went quite a few times to A&E because of the pain and discomfort in her groin and hip and the "go home and take paracetamol, it is just a flare up of your osteoarthritis" was said to her each time. You are so right - that generation did what their doctor told them without questioning anything. She was so looking forward to her 90th birthday and planning how she wished to celebrate it with friends and family. Sadly it was not to be. I hope the hospital may have learned something from this but I doubt it. Thank you for your kind reply.