I’m being pressured to take Alendronic Acid for Osteoporosis but Dad died of AF related issue. Has anyone else had experience of refusing this drug?
Alendronic acid query: I’m being pressured to take... - PMRGCAuk
Alendronic acid query
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PatriMac
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Hello, have you had a scan for your bone density to see if you need it?
Are you asking us because you are taking steroids for PMR or GCA?
Yes I have and no not taking anything! Thanks
I refused AA until I had a DEXA. Although I had osteopaenia the FRAX tool still put me on the supplements part of the graph. I have other history that made me extra wary of taking it. I lost about 3.3% further over 3.5 years after starting at 60mg for GCA. My biggest loss was 10% due to early surgical menopause at 41 and chronically low vitamin D. They didn’t like it but I told them to feel free to document that it was my decision to not take it.
Yes, it sits in my notes like a black mark but I am not pressured anymore. My DEXA Scan is borderline osteopenia. I seem to be borderline everything.
Hi, I had a DEXA scan 3 weeks ago which showed up "osteoporosis." All my T scores are under -2.5. I'm 48.5 yrs old and my Dr prescribed me alendronic acid tablets. After researching them and side effects I decided not to take them. I haven't told my Dr as yet as he won't be impressed by my choice but it is my body and my decision.
(And Monkey321 ) My reaction when AA was recommended was similar. After some reading I decided I would rather risk not taking bone meds than agreeing, and am very glad I held my ground.
Have a look at my story. It was written a while ago, research has continued - as has the introduction of more bone meds, not necessarily to our benefit. You'll find some ideas about how you can potentially improve your bone density without the use of medications.
healthunlocked.com/pmrgcauk...
Also, if your doctor hasn't already tested you for "secondary causes of osteoporosis," which they should before prescribing anything, here is info about what to ask for:
osteoporosis.ca/medical-con...
Thank you for the update on your story. I’ve read the older thread from you, and interesting. I have the AA prescribed as suggested by private rheumatologist, but am weighing up taking it. I do weight bearing exercises but a weighted vest is a good idea as I have the beginnings of a dodgy hip but doing physio to help as a first step. As my GP won’t even fund an xray on the hip can’t see he would find a Dexa scan so I’m looking into that myself. I feel a bit self obsessed with my PMR trying to find out as much as I can before my August appt with nhs Rheumatologist. Reducing the steroids slowly and this website helps so much with info.
It was suggested to me, by my doc, at the beginning of this journey, but I asked if I could have a DEXA scan before we made a decision. The scan came back good and it's not been mentioned since. The doc also sends me for a scan every two years and so far all good.
Are you saying that your doctor recommended you take bone meds (alendronate) before ever doing any testing—DEXA, BTMs (bone turnover markers)—because, if that is the case, yikes!
It was a suggestion rather than a recommendation. I thinks it's part of the recommended medication that have for long term Pred. They were very happy to organise the DEXA scans and then not worry about the AA.
As Bcol has said it’s a recommended medication over certain age, and certain dose of Pred.. and maybe personal history as well….
If it’s know that an individual is susceptible to osteoporosis then they my not be offered a DEXA…scan - doesn’t mean they can’t ask.
.
Sorry for late reply, yes just after a DEXA....
About to confess to rheumy in face-to-face this week! Dropped alendronic acid after 3 tabs last Nov. Not had a dexascan yet but will request. Mother and her sister had osteop. I have some dental work coming up. Just don't want to pop more pills than necessary. Hoping to avoid confrontation - will take deep breath! All the best!
Sounds like you feel your relationship to the rheumatologist is akin to that between a teacher and a child. You're a grown-up and perfectly entitled to make your own choices regarding medical treatment! Stand firm. 🏋️
I have had zolendronic infusions to improve my bone density - once a year for 3 years then a dexa scan to check. 3 years gap then repeat. I couldn't get on with alendronic acid because of the reflux - I took strontium ranelate for 3 years before the infusions - they don't like prescribing because it's expensive.
Yep I'm refusing the AA as too much stomach & throat cancer in my family- not to mention piles! I would consider infusions but they wont put me on them without me doing a stint on the oral version.
Yes, my GP recommended I take this too.I took one tablet and was extremely unwell, heartburn, nausea and just felt awful. I called the pharmacist who said to take no more. I take calcium and vit D andceat healthyish diet. Good luck.
I refused AA at first and then after increasing pressure from my GP to take it (after 6 months on Pred.), I asked for a DEXA scan and am at the top end of osteopenia. I started AA after doing more research and talking to the Royal Osteoporosis Society who have a free helpline. My dentist says he's happy to treat me - only concern would be if I needed dental surgery - but most treatments are fine in his view. I don't like the idea of taking AA but have had no problems to date and am used to it now. I'm ensuring my diet and vitamins are optimal and I walk and exercise with weights, so I may rethink in a year or so given I'm managing to slowly reduce Pred. The video here from the ROS is useful: healthunlocked.com/pmrgcauk...
I’m taking this after my second Dexa scan results came back severe osteoporosis, I’m fine up to now and because I’m now taking steroids I really have to keep it up.
Happy Easter
Wendy xx
I recently resigned myself to start on the Alendronic Acid. Didn’t want to but after a year of steroids above 10mg I was shocked by how much my bone density had dropped from well above average to borderline osteoporosis. If I can get to 5mg I will stop taking it. In the Pred notes it’s 1 in 10 as a side effect of taking steroids so I am obviously the 1in 10. And a reason why doctors are so keen to prescribe it. Get regular DEXA scans so you can keep an eye on your levels. I have bought a weighted vest and will do everything I can to mitigate it in the future.
Good luck
And take Vitamin K2 if you aren't already. Sends calcium to the bones.
Thank you HeronNS. I upped my K2 to 150mg fairly recently after I got the results from the scan. And I’ve also started taking a small top up of magnesium too - although I get plenty of green veg as I grow my own Kale. I held back starting steroids for several months knowing Osteoporosis is a common side effect. It was a calculated risk.
Even after my Dexa scan which was fine I was still pressurised by my Rheumatologist but I refused to take it. My second Dexa last year was also fine for my age.
Hi there. My experience was fine but after about 2 years of taking it, my teeth started to crumble. I woke up on 4/5 different occasions to find bits of tooth in my mouth. Cost me a fortune to restore the teeth and get them back in decent condition. I always take Adcal with vitamin D. Good luck
Hi cmToddy! My teeth are crumbling, too. I always had really strong gnashers. Dentist saved one last week, but others show warning signs. Have upped my calcium intake via foods.
If you aren't taking Vitamin K2 yet, please consider adding it to your regimen. It sends calcium to the bones, and, unlike doctors, many dentists know about it because they see its beneficial effect on the jaw and dental health.
Oh dear lord. Thats scary. My decent thing in my life, my teeth, the thoughts of getting messed up as side effects of medication!!!! Ive been told to take meds as just slipped into osteoporosis, i just cant pull the trigger on it!!!
If teeth start to crumble and break, it is unlikely to be directly the medication but poor oral hygiene leading to the gums becoming inflamed or receding though the medication may worsen that. Not only the autoimmune part of the illness but also pred can lead to dry mouth - and dry mouth is a major contributor to damage to gums and teeth. Before starting bisphosphonates at all, you need a thorough dental check-up including a panoramic x-ray to rule out any existing problems and any potential invasive work dealt with before starting the medication. Then it is essential to maintain oral hygiene at a very high standard while on the medication with regular hygienist appointments. Even if you standard of oral hygiene was reasonable before that may not be enough now.
My cousin spent a small fortune on private dentistry only for two successive dentists to be dilatory about checking for pockets around her teeth though they later claimed "she must have known". Didn't wash legally because she was awarded a LOT of compensation when they started loosening in her 60s and it was deemed to be the dentists at fault. She had never taken any such medications - still happened. So make sure your dentist is up to scratch!
Take Vitamin K2!
Thanks Heron. Yes i do. I take all the good things for bones. I think my bad few months with very little walking because of my back and surgeries must have come against me!! Let the bloomin scales tip!!!
I hadn't heard of teeth themselves crumbling but problems with the jawbone are a recognised side effect of bisphosphonates and the reason dentists are so wary of dental surgery when one is taking bisphosphonates. There used to be an industrial disease called phossy jaw (osteonecrosis of the jaw) when workers were exposed to a chemical in match manufacturing. This has returned to some extent, ironically with the use of bisphosphonates to treat osteoporosis.
Yes i was offered , but declined after finding out i had a normal dexa scan. My Dr said i could have it to be on the safe side as i have spinal problems. I do my own thing diet etc , this works for me . I would rather take my chances .
I was told to stop taking it when, after the second dose, I began to wheeze. Went back to taking Calceos for bone protection which must have worked for me as the surgeon who did my hip replacement said I had "amazing bone density " for my age. At that time I was on my fifth year of Prednisolone albeit down to a very low dose. I was 82 or 83 at the time.
I have been reading up on AA and looking at the reply’s and am surprised no one has mentioned what I suffered with. I took the med for 7 weeks and felt unwell generally but no symptoms until my hair started coming out in handfuls when showering and a lady I met recently has the same problem and has small bald patches now. Once I stopped taking AA the hair loss has stopped.
Hello Golfers
I too had significant amounts of hair falling out after taking Alendronate for about six weeks This is listed as a side effect but I don’t think it is widely known about
I have stopped the medication
I was recently diagnosed with GCA and am currently on 30mg pred, having reduced from 60 then 40. I was prescribed alendronic acid. I was concerned about taking it after reading posts on here, so had a dexa scan. It shows osteopenia. Femoral neck -2.0 and -2.1. AP Spine -1.7. Total Hip -1.1 and -1.2. I do wonder if my bone density got worse after taking pred also for PMR since Jan 2022, but have no baseline for then. At that time I was not aware of nor was offered bone density treatment at all. But did and still do take calcium plus vit D. So I have decided to take alendronic acid weekly and shall reassess as time goes by, and have another dexa in 2 years time. I have no side effects. I have invested in a vibration plate so will see if that helps too.
So interesting re vibration plate as I have been using one at the gym 2-3 times a week for 15-20 mins a time. I thought I was imagining it as my aches from PMR improved for the day. So maybe it does help! Can’t do as many of the exercise classes as I did so at least some compensation for the membership outlay. Hope it works for you too.
yes I took it for three months and I lost two teeth because of it. Don’t take it without seeing your dentist first and telling him /her that your doctor wants you to take AA.
I was given it and a PPI Lanzeprole when I started on Pred at 15mg although DEXA was normal. I took it with no issues until they stopped prescribing it at 5mg ( not seen as needed then by rheumy). I know some people do have side effects from it but the other side of the coin is those with osteoporosis longer term who it might have helped - but ultimately it’s your decision.
Best of luck
I refused all the meds apart from the pred saying "I cannot take all that lot". The GP gave me the many prescriptions anyway, having looked for liquid versions of the same poisons, and was very patronising, obviously thinking I had two heads. I gave up eating all carbs and read "Your Bones" by Lara Pizzorno which was recommended here by HeronNS. A fantastic book, so thanks to Heron for that😘. Had tapered down pred and was free of PMR in 2.5 years. Phew! Had a brief revisitation from the beast for a short while later and, recognising what it was, managed to kick it into touch with my leftover pred from the first time, before it could take hold.
More recently I had a RA diagnosis after having much pain in my hands for months and giving up all my creative activities. Rheumy told me nothing I could do apart from follow his drug protocol and get friendly with the physio and pain relief nurse. I rejected his ideas too and within 2 weeks of seeing a herbal medicine practitioner I was pain free and able to restart everything I had given up. I have cemented this by following Dr Brooke Goldener's vegan protocol for auto immune diseases. It's not easy to start with and seems a bit wacky but it really works and I have human looking hands again.
So what of all the "dis-information" on the internet of which the medical establishment disapproves so strongly? In my experience much of it makes great sense and actually works. I guess this narrative is a rather verbose way of suggesting to PatriMac that it could work better not to be too pressured by members of the medical establishment, of which my late father was one!
Having improved my bone density solely through exercise, diet changes and a few judicious supplements I wholeheartedly agree that we ought at least to be given support to find a non-drug way to treat the condition. What should really happen, though, is knowing a lot more much earlier in life about how to care for our skeleton. I seriously think that the main reasons I didn't end up osteoporitic by the time I developed PMR was because I had tried to live a healthy life, exercised, and upon reaching middle age took it upon myself to start taking calcium supplements. I also had a nice little job in a library which had me lifting, pushing, pulling and carrying weights all day long (books). I was in my late sixties before I even heard about Vitamin K2 which I think was the main key to my turning things around when I was told I should take AA after starting pred. Had dental work done last summer and was told the jawbone was in great shape. 😁
PMRproAmbassador
The AF problem is a reasonable objection but something to discuss with a doctor. I haven't taken a bisphosphonate until now - 15 years on pred come July. My dexascans have been middle of the range osteopenia or better and still are but a spinal x-ray showed compression which may be a fracture so my rheumy was keen we avoided anything worse - spinal fractures can be horrendously painful and disabling.
I chose to have an annual infusion. It will be up for discussion next year though as I was amongst the 1 in 5 who had flu-like symptoms due to the zolendronic acid. They weren't severe and I'd not have bothered had they just lasted the forecast 2 or 3 days but it was 2 WEEKS! It also triggered some mild atrial fibrillation despite having had an ablation some weeks before. That has settled down from post-infusion but the while the ablation has improved matters, it is very much still there.
Re side effects of ZA: I had 3 infusions with no problems. My dexa showed a slight improvement in all measurements but still -3.4. So consultant suggested a further 3 infusions 😏.Since my 4th at the beginning of March I've been feeling off-acid reflux has returned and I've had a horrendous UTI combined with Thrush. May decide not to have a 5th??? PS have now been off Prednisolone for 11 months 😊
As I understand it, the bisphosphonates are unlikely to improve bone density - they seem to stablise the bone in the shorter term. There are a couple of drugs that do increase bone density though - Prolia being one. You later switch to a bisphosphonate or stay on Prolia forever.
Yes, I read that but mine had definitely improved positively after the 3 infusions. Getting a copy of the full dexa results was like getting blood out of a stone but it eventually arrived and in glorious technicolour! The changes were clear for even me to see. Perhaps I've just been exercising more effectively or my diet has improved ?
I was very reluctant to take Alendronic Acid and doggedly declined for three months. However, my Gastroenterologist finally persuaded me to take it! (I have Chron's). This was based on his experience of caring for his mother after she had fractures as a result of Osteoporosis. Weighing up all my problems, RA, OA and others, I decided to give it a try. The main side affect that I have is really intense bone pain. It's very sharp and continuous, in my pelvis, upper back and hips as well as in one shoulder. It comes on in the middle of the night and lasts through until I get up out of bed when it disappears, even when I am sitting. Really strange. My Dexa scans weren't good. I am taking it once a week and have found that instead of waiting for the hour afterwards before having breakfast, bringing it down to the 30mins has helped re the 'belching'...horrible word for a horrible side affect. I expected it to give me intestinal issues, and it did initially but only for a few weeks after which that settled down. I have now used it for three full months waiting until the 2nd January before starting it. It is a really difficult decision to make, especially since it can, albeit rarely, cause fractures. I don't like it but by taking it weekly at least it can be stopped and my dentist has said to call her if I have any problems with my teeth. We each have to make the decision and hope we have made the right one. A tough call...it seems we damned if we do and damned if we don't.
I couldn't take AA, so took nothing for about a year, except calcium, D3 and K2. Developed severe OP during that year, from the steroids. I now have 9 vertebral fractures. First 2 diagnosed in ER last July. Had a Zolendronic Acid infusion last October and fingers crossed it works. First dexa showed osteopenia, but rheumy says she said osteoporosis. She didn't, but too late for that. Why she did not suggest the infusion at that time, I will never know. Everyone is different and I have high anxiety when it comes to new drugs. Ultimately, it's your body.
I take Risedronate once weekly which is less harsh on the GI tract. I already had established osteoporosis prior to the Pred. My father had severe osteoporosis and compression fractures due to his steroid intake so I take the bisphosphonate prescribed. I have no stomach issues with it but as others have said, I’d only take it if I were at risk of osteoporosis which can have serious consequences. Good Luck
I refused to take any bisphosphonates for years but suffered 2 severe spinal fractures 15 months ago so have been on this drug now for 12 mths.
Looking back I wish I had have listened to the drs way back years ago. Having a consult w bone specialist in 2 weeks so will find out if it’s has improved my bones but live now with constant pain. My quality of life has deteriorated immensely.
My personal experience, good luck to you w your decision
Couldn’t take AA … made me very unwell. Risendronate however was then prescribed and it’s fine! Accrete - Calcium and D3 tablets - for 6 days. No problems in 4 years. 🤞🏻
I had been on AA for 6 years I fell I was in hospital for 3 weeks doc in hospital took me off AA said it was what caused my fractures I had 3 fractures needed a big op for my hip femur also just above knee.I've been for a bone scan last week now waiting to hear back from hospital Hannah
Did you get the fractures without having a bad fall then?
Doc said one of fractures was old but obviously with falling the fractures happened easier due to being on AA he said that's what caused me to fracture easy as it's hard to break your fumar usually things happen like that are example car crash not just a fall in house.Hannah
Don't know - my neighbour slipped on a wet floor and broke femur, ankle and shoulder. Mid-50s and spends her leisure climbing mountains and mountain biking! Depends how you fall really. But it IS very unusual to break the femur - and it is a known effect of long term bisphosphonates.
Well, I was presuried into taking AA by the Dr. researched the side effects and was very cautious about taking AA. I got a dexa scan and it proved I didn't need AA!!!
Yes. I flatly refused even though a DEXA scan showed I have osteoporosis in my spine. I've read a lot about strengthening my bones so do excersize, take Vit D3 and K2, eat calcium rich food - and there was recently a clip on here about a Japanese (I think) researcher on bones who recommended some specific exersise that jars and puts weight on the spine to get the osteocytes active 😀 (need to check any info that comes from my memory 😀 😉 😄). My rheumy has never questioned my decision but one GP I saw way back was very unpleasant about it. Good luck.
Can you please check who the Japanese researcher is? Thank you
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