I’ve read about so many issues people have had with medications I have avoided Alendronic Acid etc up to now. However, I am about to start the tablets this week as there’s a seven month wait for the annual infusion which I’m on the waiting list for. Have any of you found it easy to take the weekly tablets and not had side effects? I’ve now had several compression fractures so have little choice. Any tips on taking it, too? Thanks so much for reading.
Alendronic Acid: I’ve read about so... - Bone Health and O...
Alendronic Acid
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Snowybear
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yes I have taken Alendronic Acid weekly 70mg tablet for two months and had to stop as had constipation and bloating and went on Risendronate 35mg tablet weekly and then tried daily 5mg but suffered the same condition so I am now about to start 6 monthly injections of Denosomab so fingers crossed I will be ok. I always took the tablet with a large glass of water not the 200ml recommended and that worked for me.
Have you been made aware that, if you can't tolerate denosumab and have more than one injection, you will have to take oral alendronate or the IV zoledronate as a relay drug for at least two years to avoid the potential rebound vertebral fractures? Something to consider before committing to denosumab if you're not able to take alendronate now.
Hi Arcadia 10. Thanks for your comments - aware of probs with Denusomab so sticking to AA.
No I have not been made aware of the above information. Don’t know what possible side effects come from Denosomab. What is a relay drug?
Prolia (denosumab), like all of the osteoporosis meds, comes with the potential for side effects, some more serious than others. Read about them here medicalnewstoday.com/articl... Not everyone taking Prolia has these side effects and many people have been taking Prolia quite happily for years. A lot depends on one's sensitivity to medication.
However, after being on the market for about six years and being hailed as the new wonder drug to treat osteoporosis, in 2016/17 Prolia was found to have a unique and very serious problem when stopped for whatever reason after more than one injection - it can cause multiple vertebral fractures. Prolia does a very good job of inhibiting bone turnover which increases bone density very quickly in the majority of people, but the reverse happens when you stop having the injections - your bone density decreases dramatically in a very short space of time and about 10-15% of people experience spontaneous fractures of the spinal column. This was not apparent during the clinical trials before release to market and it was only when people were told by their doctors that they could stop Prolia because they had moved from osteoporosis to osteopenia - or better - that the number of patients presenting at doctors' surgeries and hospitals with fractured vertebrae rang alarm bells and the problem started to be documented. Unfortunately the warnings came too late for a large number of people who had been recommended a drug holiday and are now in wheelchairs, on walkers and disabled due to vertebral fractures and in excruciating pain. This is why you MUST follow Prolia with a relay drug, i.e. a potent bisphosphonate which can be either oral alendronate or IV zoledronate, usually for at least two years. So, if you can't tolerate bisphosphonates, then you really have no way out if you can't tolerate Prolia. Because of this serious problem, the current school of thought amongst doctors is that their patients will be on Prolia for life as stopping it is risky. That's not always possible, depending on the patient's reaction to Prolia.
Something to note is that stopping Prolia also refers to being late having the next injection. You cannot be late by even a couple of weeks as the same applies - you run the risk of vertebral fractures. The injections should be given as close to the six month mark as possible each time. Read of others experiences here inspire.com/groups/bone-hea...
Two other serious side effects of not only Prolia but also bisphosphonates are osteonecrosis of the jaw (ONJ) and atypical femoral fractures (AFF). ONJ seems to occur when invasive dental work, such as an extraction, is done, but anything which involves drilling into the jawbone, such as implants, has the same effect. The blood supply to the jawbone is compromised when on Prolia and so the socket of an extracted tooth doesn't heal. Instead the bone becomes necrotic and dies. This is why your doctor should have told you to have a dental checkup before considering starting Prolia so that any dental work can be done beforehand. This, however, is not always possible as one doesn't know in advance about dental work which might be necessary years down the track while on Prolia. Most dentists won't touch patients who are on any of the osteoporosis drugs when it comes to invasive dental work. Patients are generally referred to an oral surgeon with the procedure being performed in hospital and a close watch is kept post-operatively for any signs of ONJ which can be treated, but apparently it is a very painful condition to be avoided at all costs.
AFFs occur when the femur of one or both legs fracture with minimal trauma, due to bone turnover being reduced by the osteoporosis drug so that the bone becomes brittle. The femur then has to have a rod inserted into it and often the unfractured femur in the other leg is rodded too as a precautionary measure.
I hope I haven't scared you with all of this but it's important that you know what you're dealing with. Your doctor should have told you about the possible side effects so that you're aware of what you're getting yourself into - and have an exit plan in mind in case you need to stop. The concept of informed consent regarding Prolia made the national news in Australia last week abc.net.au/news/2024-10-31/... as a lot of medical professionals are not advising their patients about the risks before putting them on what could potentially be a life-changing drug - and not in a good way.
So be warned. Have a conversation with your doctor, and make sure that you really need to take Prolia. Presumably your DEXA scans show that you have osteoporosis, not just osteopenia. You also should have a full panel of blood tests before starting any osteoporosis drug to rule out secondary causes for osteoporosis, like hyperparathyroidism.
• in reply toArcadia10
‘Most dentists won’t touch people on osteoporosis drugs’
I am in the UK. I had a dental checkup and asked about AA. He said it was of no concern. He said that when it first came out about ten years ago, all dentists were told to refer extractions etc to the hospital service but that soon became overwhelmed so they dropped that advice as it wasn’t practical. He also said the problem was that AA has a slight blood thinning effect, mild when compared with warfarin and other anti coagulants, which was the reason for more caution with any work that causes bleeding.
Arcadia10• in reply to
In your quote of what I wrote, you omitted the last part of the sentence which is "when it comes to invasive dental work". I wouldn't want readers of these posts to mistakenly get the impression that they can't have any dental work done while they are taking osteoporosis drugs. It's the invasive work like drilling into the jawbone for implants or an extraction which seems to trigger osteonecrosis where part of the jawbone dies due the compromised blood supply caused by bone turnover slowing dramatically while patients are on osteoporosis drugs so that the damaged bone can't heal. Having a filling or a crown fitted or even root canal treatment is quite safe as the jawbone is not affected.
It's interesting that you say your dentist thinks it's of no concern if you have to have invasive dental work in (presumably) a dentist's chair and possibly that is, as you say, because the public health system in the UK can't cope with the influx of dental patients into hospitals for treatment. I suppose for most dentists in other countries who know what they could be up against in terms of the possibility of ONJ occuring in patients on osteoporosis drugs, the risk is too great in terms of potentially being sued for damages or - worse still - damaging their patient's health to perform invasive procedures in their surgery. I think this is definitely the case in Australia where dental treatment is partially funded by one's (expensive) private health cover. If you can afford to go to the dentist here, you can afford to be referred to a private hospital for a procedure by an oral surgeon. From what I understand, having invasive work done by an oral surgeon under general anaesthetic is less traumatic to the jawbone as the surgeon has the time, equipment and support staff to presumably gently and in a sterile environment cut the gum around the area on which he is working and not just rely on force to remove a tooth which inflicts trauma on the jawbone.
I'm not a medical professional, but I do disagree with what your dentist says about AA causing more bleeding with, if I read it correctly, this presumably having a bearing on whether ONJ develops or not. To my understanding, the opposite is true. The blood supply to the jawbone is compromised and reduced after a period of time on osteoporosis drugs, and the lack of blood supply to the jawbone is the cause of ONJ, not excessive bleeding.
• in reply toArcadia10
Hi
I’m going to have to have a longer conversation with my dentist aren’t I? I understood him to mean that the concern was excessive bleeding due to the blood thinning properties of AA. But there is no mention of this aspect in the leaflet with AA.
Not being a doctor, dentist or pharmacist, I have no insights. My GP just asked if I had any loose teeth and to have a routine checkup before starting with AA. Hence the conversation. So in 6 month’s time I’ll ask again.
Livingunderthesea• in reply to
I saw my dentist for a routine check up yesterday (already booked prior to my telephone consultation with the doctor last Friday) and although I don't need any dental work doing (invasive or otherwise).....yet!, he wasn't in favour of AA and suggested speaking to someone about osteoporosis with regards to physiotherapy, nutrition and a chiropractor as bone density might be helped with their advice of exercises etc. I'm not a doctor etc either but I'm going to give that a go first - despite my consultant very abruptly telling me to "just take the medication" during our final conversation! Only time will tell, but I'd rather try that than take my chance of being the "extremely rare" person who gets the side effects of cronosis of the jaw, cancer of the voice pipe or other broken bones (such as thigh bone) that are caused by the medication - my doctor gave me this list of side effects, which just put me off even more! Hope you get on okay with whatever choice you make, because it is YOUR choice.
Arcadia10• in reply to
My own dentist is a youngish guy in his 40s who keeps up to date with advances in technology, new techniques, and any information enabling him to do his job better. I could see the dismay on his face when I told him in 2018 that I had started Prolia. He then explained to me that he wouldn't be doing any extractions or other invasive work on me after a year on Prolia or the other osteoporosis drugs. Luckily I've never had to have an extraction, but since stopping Prolia have had three crowns fitted as the molars had long fissures in them, so might have broken at some stage if I bit down hard - and then would have needed to be extracted. My dentist is completely across the ONJ problem and didn't want me to risk an extraction. I trust him totally, so I had three crowns.
So yes - probably a good idea to have a more in-depth discussion with your dentist and do a lot of reading in the meantime to become as informed as possible. As I have found to my detriment in recent years, not all medical professionals are created equal. That applies to dentists as well as doctors.
• in reply to
Further to this there’s an informative Royal Osteoporosis Soc fact sheet on osteonecrosis of the jaw and that includes a link to Scottish guidance for dentists.
If you’re in good general health and have good oral health then they say you’re at low risk if on AA for up to 5 years, but higher risk for longer.
I thought you could have up to 3 Denosumab injections and stop without rebound effects? - just don’t have the 4th one. ???
No, you run the risk of rebound fractures after more than one injection. Read the abstract of the definitive guide by Olivier Lamy: Stopping Denosumab (2019) researchgate.net/publicatio... "After the second denosumab dose, there is a rebound effect with an increased risk of multiple vertebral fractures. A potent bisphosphonate prescribed at denosumab discontinuation could reduce this risk."
Thank you for this. I have just read the article. I think I won’t have my second injection. After all, even if I had it, it wouldn’t guarantee no fractures!
Do you mind if I ask what your DEXA showed? You've obviously been on teriparatide so presumably have bad osteoporosis.
DEXA SCAN 7 August 2024
Hip -3 (previous, 2021 was -3.7)
Spine -3.6 (previous, 2021 was -2.8)
Fem Neck -2.5 (previous, 2021 was -2.9
Your hip and femoral neck have shown significant improvement, presumably from the teriparatide. Is there any reason why you want to stop an anabolic and switch - or not - to an antiresorptive (Prolia)?
I couldn’t hack it with the teriparatide. I managed seven weeks, then the side effects became too much (particularly when I got heart, palpitations, and kidney stabs….). I’ve had endometriosis and lost some kidney function, so can’t afford to mess around with that.
I understood that teriparatide was given to people who had sustained fractures, not as a first line drug. Did you try the bisphosphonates first? Prolia too is not meant to be a drug of first resort, mainly because of the problems with stopping it.
You are right. And, I have sustained fractures. One was low impact, one was high impact, and 2 vertebrates in my spine are compression fractures, but only slightly at the edges.
I see. So that's why your doctor put you on Prolia - long-term maintenance to increase your BMD and hopefully prevent any further fractures as you couldn't tolerate teriparatide.
I don't mean to put you off and having fractures changes everything dramatically, from what I understand, but I had a terrible time on Prolia. Eighteen months of feeling ill and lots of side effects until a new GP recognised the problems and told me to stop Prolia. Then I had 2.5 years on bisphosphonates as a relay drug which didn't work as well as they should as I was put onto risendronate which isn't as efficacious in preventing rebound fractures as alendronate or zoledronate. I ended up fracturing both my right and left sacral alae and cracking my pelvis. Six weeks on crutches wasn't much fun! So if you take the second injection and then want to stop, it's a bit of a mission and the outcome is not guaranteed.
Ultimately you've got to decide whether not taking any osteoporosis drug is a high risk for you in terms of further fractures. Were you not able to take bisphosphonates which is where most people usually start?
I’d taken all the oral possibilities of treatments, and the side effects were mostly ruining my digestive system. I now have GERD, cricipharangeal spasm and esophagus dismotility.
Then came the injections. Where I used to live, they had agreed to give me a lower dose of zoledronic acid (because of my high sensitivity to medications). But in my new town (Eastbourne) they refuse to do that. Hence, and as I had to minorly fractured vertebrae, Teriparatide was prescribed. I couldn’t manage the Teriparatide, so was offered Prolia (pretty much bullied into saying yes for it)..
the decision for the next step will have to come from me. As of today, I am 80% decided and doing nothing. I will be 75 in February. I weigh 50 kg. I have a dog and walk twice a day, using Nordic poles because of my osteoarthritis in the ankles. I have a minimum target of 5000 steps, the average around 6000.
we all have to die of something. And thinking I would prefer to live the remainder of my life without side effects. it’s a bit like deciding whether to have chemotherapy or not. Short term problems for long-term gain?
You really have been through the mill and I can see why you're veering away from any prescription medication. I came to the same conclusion after 4.5 years on first Prolia and then the relay bisphosphonates. I'm 70 and would also rather enjoy the rest of my life without being on medication, all of which seems to come with unpleasant side effects.
I'm also slim like you with low body mass and I exercise several times a week, walking between 30-40kms pw. I follow the COMB (Combination of Micronutrients for Bone) pmc.ncbi.nlm.nih.gov/articl... protocol of supplements to a large extent, so take vitamins K2, D3 and C, boron, magnesium, melatonin, zinc and might restart strontium again in the future. I also eat lots of fish and no red meat. Hopefully the combination of diet, supplementation and exercise will make/keep my bones strong without the need for prescription medication.
I've read that to prevent one fragility fracture, you have to treat 100 patients with osteoporosis drugs. So 99 of those patients wouldn't have fractured anyway, but were given the drugs as a precaution. Well, rightly or wrongly, I'm prepared to take my chances without them. I fractured a few bones while on the drugs which were meant to protect me, but didn't, so now would rather eat healthily, exercise and take supplements which I understand will increase the quality of my bones - and hope I'm one of the 99!
It’s odd isn’t it, the teriparatide is meant to help specifically with the spine, and that’s what has a worse reading. However, it was a different Dexter scanner as I’ve moved to another area in the UK, and the rheumatologist says that scan is very hugely…..
Yes, the different DEXA machine could be the issue, but then your hips show significant improvement so strange that your spine shows deterioration. It could also be operator error, i.e. incorrect positioning on the scanning table. I had my DEXA of March 2024 redone eight days later because I was sure I hadn't been positioned correctly - and the results showed improvement in my hip.
Agree
It’s odd isn’t it, the teriparatide is meant to help specifically with the spine, and that’s what has a worse reading. However, it was a different Dexter scanner as I’ve moved to another area in the UK, and the rheumatologist says that scan is very hugely…..
Hi Soupandsmoothies. Thanks for replying. I can see it’s important to take it the right way and will do that too. The infusion will be Alendronic Acid so hope all ok!
Like you, I am not keen on taking the medication, but after 7 vertebral fractures this year, I can't bear the worry of not trying the medication as the symptoms off said fractures have been life changing. Of course I know taking meds does not guarantee I won't experience another fragility fracture, but you have to weigh up your own particular situation. So, today I took my 12th dose, 3months now gone by. I take a large glass of water with it, 200 to 300mls, then stay upright for full 30mins. I have had no new symptoms during this time that I can 100% say is due to alendronic tabs. I followed advice on one of the R.O.S videos, and I keep walking around till time is up. Then have my breakfast. My sister has been on the meds for over a year with no problems. I'm still monitoring how I feel, changing my diet to reduce sugars and hopefully help my gut with less In flammation, it's very squashed in it's new shape. I have had a lot of success this week cutting out sugar,....good luck with your journey,this forum helps me very much
Hi Sleeplessinlife. Will follow your routine carefully. I don’t want anymore fractures if can avoid. So grateful to be able to exchange experiences on this forum
I didn’t get on with alendronic acid but I know loads of people who are perfectly happy taking it and have absolutely no problems at all. Some take tablets some have annual infusions. So I would say if you are going to take an osteoporosis medicine then you should probably give it a try. Sleeplessinlife has given you good advice on how to take it.
I am amazed that you are having to wait for all that time to have an infusion. That seems quite unacceptable although it could possibly be because you haven’t tried the tablets first.
I would also be very careful about starting Denusomab as a first choice for the reason given by Arcadia10.
Also take a look at the post below written by Sunseaandsand yesterday (concerns and devastation) about her mum’s journey with Prolia, then go onto the ROS website and read all about all the various treatments on offer before you make a decision to go on Denusomab.
Hi Fruitandnutcase. Thanks for replying. It’s just the queue of patients waiting apparently. I won’t take Denusomab, just AA. I suppose all the people happily taking a weekly AA don’t report it on here - more likely those encountering problems.
I think that’s probably the case. Hopefully you will be fine.
Hi, I took alendronic acid for 5 years with very little problems, a bit achy but probably would be anyway , like everyone else I took it with a large glass of water ,sat upright & watched tele till time was up to have a coffee......it didn't really change my dexa score but it didn't get any worse, am now waiting to start teriparatide and keeping my fingers crossed it helps......hope you get on OK...
Hi Blondeisbest. Thanks for replying and your encouraging response. I’ve been told to stop ibuprofen when I take it because of inflammation so that just leaves me with paracetamol for back and hip pain.
Hi Snowybear, I also can’t take ibuprofen as I’ve had ulcers in the past but my doctor suggested ibuprofen gel along with paracetamol - I find it really works! I also use Cura heat patches (Amazon cheaper than chemist shops) as a change from the gel when I feel like some warmth and comfort. Good luck
Hi Heleniumand. Will bear that in mind - tho’ tend to be allergic to lot of skin products too!
sorry if you can’t use the gel, but the patches stick to a T shirt, vest etc
Didn’t know that - thanks for info
I had the same problem but paracetamol didn't really do any good,so took ibuprofen on my other days with ometprazol ,and low dose co-codemol at night to settle down for sleep, that seemed to work fine for me.
The best way to maintain bone health is taking estradiol via dermal route using gel or patches to maintain 30-40 pcg/ml. Alendronic acid tablets are fine so long as you take them with a full glass of water while fasting and do not lie down for around 1 hour thereafter. I have had no problem with Alendronic Acid so far. However, in India I cannot use Estradiol as there is no ultrasensitive analysis available for Estradiol. If you use Estradiol then you need to check your Estradiol content using the ultrasensitive test. The normal chemiluminescent test is not accurate enough. Also, the problem might be to get your Physician to give you a prescription since it is not SOP yet. However, you might be able to persuade him or her.
I’m on Actonel - 6 months and currently no problem taking. Hope to keep taking for 2 years! Have osteopenia. I did try Prolia but stopped after 1 needle due to side effects.
Hi Siamang. I would be interested to know more about your side effects from Prolia. I’ve just had the 1st injection too, and had horrible side effects.
Hi my main side effects with Prolia were hair loss, fatigue and heavy sensation in legs, tongue and mouth sensitivity, sleep problems and heartburn, oesophageal problem. Fortunately Dr didn’t give the 2nd needle!
I’ve been taking AA for six months and so far been ok.
Thanks! That sounds promising.
Hi Snowybear. I'm starting the 5th month of weekly AA. As I have a problem swallowing tablets, I've been given the effervescent form. I find that after the fizzing stops there can still be tiny bits at the bottom of the glass but a few gentle stirs dissolves them. Also, have a few mouthfuls of water first and then the stated amount after giving my mouth a really good swish round. And odd sips during the 30+ minutes after. I will say I'm not happy taking it as I have fears for gullet but even more fears over lumbar T-score. Sometimes wonder if I can feel tingling in jaw bones but that's probably after reading about the side-effects. All the best.
Thanks, PoppyPaddler, I’ve been given the tablet form. Had them before but chickened out, but determined now because of state of spine. I’ve a pile of ironing lined up for the morning for 30 mins!
I was okay for the first 10 days and then the symptoms kicked in - bloating, constipation and indigestion. Never suffered from that before. Then I tried Risedronate and 10 days later I got the worst of headaches. I never get a headache . This turned to sinusitis and I had to take antibiotics. I had my first infusion in March which gave me no side effects and will definitely have the second next March. Good luck. It seems to me that if one tablet doesn't suit the next one won't either but who knows.
Hi superbones . There’s just no telling, so giving it a whirl, so to speak!
Hi Snowybear.Like you I suffered spinal fractures when I was on AA which I had taken for 3 years on and off as I was very anti drugs. I too was very active until fractures just suffering back pain etc. I am now going to start Teriparatide injection as denosumab was suggested but due to rebound issues I was worried about it. Also Teriparatide is bone building which my consultant said would benefit me more as my osteoporosis is severe and t score in spine is -4.7.
It is sad many health professionals do not really discuss the issues surrounding these drugs.
I know once my 2vyears on Teriparatide is up I will need to consider a drug to maintain what has been built. I'm thinking of AA infusion but not sure. Anyway my 1st injection is tomorrow so fingers crossed all will go OK. Good luck and depending on your age I would think seriously about denosumab by the way I'm 62
Hi, I refused to take Alendronic Acid last Autumn, but at the end of the year, having thought long and hard, I decided to give it a try. I had terrific pain in the early hours of every morning so after six months, my consultant let me try Risendronic Acid instead, This was better but I was still getting pain, albeit less, so I pushed to try the daily dose of 5mg. Much, much, better for me. I have now taken it for three months. Yes, it is a nuisance having to take it daily but well worth it. I now tackle any pain with Zapain taken at night and again in the early hours around 3 to 4am, when I have to go to the loo anyway, hitting it head on before it gets stuck in. My consultant didn't think it would make any difference but it has. He said he had never had a patient with my problem. Initially he suggested that I stop taking the drug for three weeks to check that it was the 'acid' that had caused it...it was. I do take Sundays off...we have an early church service and I did stop it for our holiday in the late summer for one week. He said that I could do that. I haven't regretted the change over at all. Incidentally, he didn't think infusions would be right for me. Wishing you all the very best, K.
Hi Knip. It seems everyone is so individual in their response. Hope 8 don’t ge5 lot of pain as not good with pain killers either!
I had a similar experience with unpleasant side effects from the weekly 35mg risedronate tablet, so like you switched to the daily 5mg tablet. After two months and getting a bit frustrated with the stand-up-for-half-an-hour-after-taking-it-with-lots-of-water routine, I tried the weekly tablet again - with great success and continued on for 2.25 years. I think taking the daily 5mg tablet for a few months gets your system used to it, so you might like to retry the weekly tablet now.
I'm curious as to why you're having pain in the early hours of the morning. Are you taking the risedronate first thing after getting up in the morning, eg. 7-8am? You know that you mustn't take it at night before bed?
Thank you for your reply. I always the tablet when I get up, Arcadia, with plenty of water. There seems to be neither rhyme nor reason why this happens to me. I react very quickly to medications, which is mostly a good thing, but not with those that don't agree with me. I am managing quite well at present, with the use of Zapain, so will continue as I am for a while, now that I am three months in and then, perhaps I will try the one a day again. I have some of those left. The mild nausea I experience always goes around two hours after I take my tablet, so I hang on to that.
Good to hear, Knip, that you're taking the risedronate at the correct time, i.e. first thing in the morning so presumably on an empty stomach while standing upright. You can do a lot of damage if you take it at bed time and then lie down to sleep. I know of the wife of an acquaintance who somehow ended up not taking alendronate properly - I suspect taking it and then lying down - and ultimately it burned a hole in her oesophagus resulting in surgery, ICU for weeks, liquid diet for months, and a lot of pain and suffering.
I'm surprised though that you're getting pain in the small hours of the following morning (3-4am?). I felt the side effects after a few hours when starting out on the weekly tablet whereas in your case it appears that they kick in after about 20 hours, if I'm reading this correctly. That's most unfortunate but good that the Zapain works for you.
Hello Snowybear. I have been taking AA since late winter last year. I found it difficult to swallow the large white tablet I was prescribed. It looked like the kind of thing that a vet would blow down a horses throat with a peashooter. After taking them a few times I complained to the GP and was prescribed a smaller, flatter version which has been easier to swallow. I have found it is useful to make up a glass of warm water, have a few small sips to 'wet your whistle' before taking the tablet as this makes my throat a bit more slippery and it goes down pretty easily. I also make sure to stand up as straight as I can to send it on it's way down. I find three or four glasses of warmish water send it on it's way. As far as constipation is concerned, I try to drink lots of water on the day and the day after. I also have a calcium tablet to take twice a day, but don't take them on the same day as the AA, and have even reduced them to one a day the rest of the week as I believe they are a culprit in 'bunging me up'. I have not noticed any side effects of the AA. Hope that helps.
Hi Observerone. I’m not taking a calcium supplement tho’ a dr said I should but nothing prescribed. Eat loads of nuts and seeds and dairy. I haven’t looked at the pill yet - guess will have to give it a go. Wish i could have the infusion without the wait. The thought of no cuppa for half hour is awful!
hi I got diagnosed in January so have been taking Alendronic acid since then .
I take it every Sunday morning with a pint of water which I have , then go about my chores then 1/2 hour later I have my breakfast etc !
I must say I have haven’t experienced any side effects so just go for it
Hi! I took one Alendronic Acid and was violently sick so they didn’t give me any more. They then put me on Terraparatide which I had my biggest bone improvement with. I went from -5.5 to - 4.6. I could only take it for two years and was then given Denosumab which I’ve been on for about four years now with no problems. I know there’s controversy about most the drugs but without them my bones were falling to pieces. I’ve had seven spinal fractures a broken foot and a broken hand. They were all spontaneous fractures except the hand which I fell on.
Hi Mavary. Poor you! I suppose if I don’t cope with it, they might shuffle me up the queue a bit!
Mine happened before Covid. It was urgent for me to get treatment because by then I had three spinal fractures and a broken hand. I was in hospital because I couldn’t walk. As soon as I got home a nurse came to visit me and she showed me how to do Terraparatide injections. At first I didn’t think I could do it but after the first couple it was fine. It’s quite a scary thing to deal with until you’ve actually done it and then you wonder what you worried about.
It depends how bad your bones are as regards when you have your treatment. Things have changed a lot in the last four years.
Hi Snowybear. I took AA for 5 years with no problems and my bone density scores have improved over this period. I have just had a 6 month break from the medication as suggested by my GP. I saw him last week for a review and he has now restarted me on the weekly dose. Like others have mentioned, drink a large glass of water and stay in an upright position for at least 30 mins after taking the tablet. For info i have 8 compression fractures which havd been life changing but none since taking AA. Good luck. 🤞😊
I started alendronic acid about seven years ago — when I was about 73 — and had fallen breaking my wrist. I developed all sorts aches and pains and came off it after about a month.
I then had three (I think) denosomab jabs and became worried about my teeth. Two became loose and had to be taken out. As there are all sorts of problems written about jaws and teeth and Denosomad I stopped straight away.
I went without until about a year ago, when I developed full-grown Osteoporosis. This time I had no adverse reactions! May you’ll be lucky as well?
I take Risedronate weekly( 35 mg) gastroprotected, and I do t have any side efect at all. I started with the montly dose 150mg( I took for two months and also without side efects) I changed for weakly dose since in Portugal is easier to find this weakly dose. I hope it helps.
Hi I was put on Alendronic Acid immediately after discovering I had multiple fractures on my spine . I find it difficult to swallow tablets but these are small , you have to drink plenty of tap water with them . I was taken them for about 15 months now just started the Teriparatide injections . I didn’t have any side effects . I also take Adcal.-D3 twice a day . I was told to take them 4 hours after taken the alendronic acid . Good luck
Thanks for message. Hope you find the Teriparatide ok - I had no probs with that at all.
Yes I’ve been fine so far thank you.
Hi Snowybear,
I find if the water I drink it with is tepid rather than cold it is better for me , other advise would be stay positive and try not to worry too much about side effects as you may not have any. I haven’t had a repeat Dexa since starting on AA (4 years ) but have noticed an improvement in my nail strength and no further loss of height , having previously lost 1.5 inches in 3 years ,
Good luck with it,
Thanks for your encouragement- I certainly won’t feel alone taking it after all these messages!
TLDR: no problems with AA!! Longer version: I was diagnosed with Osteoporosis in December 2021 after breaking my foot in August. I was immediately put onto Alendronic Acid, plus calcium with vitamin D and have been on that ever since. I have also added Vitamin K2-Mk7 as reports suggest it might help absorption (and doesn't do any harm, so why not).
The only side effects I have had have been from the Calcium (makes your poo very dry and hard - does get better after a few weeks, but still pretty hard, but lots of easy peelers loosens things up). To improve matters I have recently halved my calcium VitD to 1 tab a day and to compensate have upped my calcium intake via diet (0% fat greek yoghurt (not greek style), plus fruit and seeds including chia every day), and have a VitD supplement to make up the Vit D difference. This has definitely improved things on the poo front. Good luck.
Forgot to share how I take the AA tab - once a week on a Monday morning with 500ml of water. Do the washing up, catch up on emails and a mobile phone game for 30 mins all whilst standing up, then have a cup of tea. Leave it to much later in the day for my Calcium Vit D and Vit K2-Mk7 tabs
Right, well no washing up on Tuesdays - will save it all for Wednesday mornings!
Hello, I tried the Alendronic acid but couldn't tolerate it and so I now have zolendronic infusions once a year for three years. Then a break and restarted next round of yearly infusions this year. I had a DEXA scan and the infusions have slowed the rate of bone loss down. I take calcium and vitamin D daily throughout the year.
When I have the infusion they advise to drink plenty of water and side effects were mild fluey symptoms for 24 hours. I hope that you tolerate the tablets, but if not you have another option.
Hi strongmouse, yes hopefully will tolerate tablets and then have infusion when reach top of waiting list. Thanks for replying.
I had the tablets but I had a bad reaction to them so I was able to have the infusion.. But unfortunately this year a had to have major dental work so my infusion had to be cancelled. I was informed by my Maxofacial Surgeon that the infusion lasts 15years in your body has anyone else heard this please?
Not heard about that before. It’s hard to know what to do for best.
Hi, I've taken Alendronic Acid since January 2023, no side effects I'm aware of. I'm lucky as I can stand, so drink lots of water and stand for an hour doing the ironing. Seems to work for me. As I hate ironing, this 'kills two birds with one stone'
Thanks, BlueRisotto. That’s good to know! Do you keep drinking for the whole hour or just to swallow beastly pill? Starting mine tomorrow. I estimate I’ve 30 mins ironing - quite enough!
I drink about 200ml first then take regular two to three big sips of water. It probably helps me not feel hungry thinking about it - and hydrated. Hope that helps.
Yes, thanks!
ROSModeratorPartner
Hi everyone,
Thank you all for taking the time to come on and share, it’s great to see such kind and thoughtful responses in this thread.
As it is so important that we feel informed in any decisions we make about our health, we just wanted to pop in to clarify a few things that have come up.
Please be aware that people’s experiences may differ depending on where they live. As our charity is based in the UK, our information reflects current expert-views, practices, and guidelines relevant to the UK.
1) When taking alendronic acid tablets that you swallow whole, be mindful of the water temperature. Warm or even tepid water may cause the tablets to dissolve faster. We have lots more information about taking alendronate/alendronic acid on our website: theros.org.uk/information-a...
2) For denosumab (Prolia), it’s important to have the injection every six months. This is because the effects of the drug wear off very quickly. You can have injections up to four weeks early or late, if you need to. Also, you may not need to take another treatment after denosumab if you have been on it for less than two years. But you should make this decision with a specialist, who can talk to you about your options. For more information, see our denosumab webpage: theros.org.uk/information-a...
3) Osteonecrosis of the jaw (ONJ) is a very rare side effect linked with some osteoporosis drug treatments. The type of osteoporosis drug treatment and the length of time you’ve been on it should not affect where you receive your dental treatment. You’ll only need to be referred to a dental hospital if you have a complicated dental need. For more about ONJ, see: theros.org.uk/information-a...
We hope this may help those coming across the thread 😊 We appreciate all the wonderful support that’s taken place so far, and hope that you are able to continue to connect – it can make such a difference not feeling alone in our health journey.
To learn more about our moderation, please see our community guidelines or message us directly.
Wishing you all the very best,
Lulu
ROS Moderator
Hi Lulu, Thanks for your input - cold water it is, then! It’s been great encouragement to me as about to start AA. I will have a look at ROS link. Thanks. SnowyBear
Just a quick response, Lulu, to your point #2. It's common knowledge and well documented in the international medical literature that more than a single injection of denosumab (Prolia) needs to be followed by a relay bisphosphonate if stopping the injections. Read at least the abstract in the definitive guide to getting off Prolia by Prof. Olivier Lamy researchgate.net/publicatio... "After the second denosumab dose, there is a rebound effect with an increased risk of multiple vertebral fractures. A potent bisphosphonate prescribed at denosumab discontinuation could reduce this risk. "
Being on Prolia for two years means that you've had four injections and stopping without a relay bisphosphonate means there is a 10-15% chance of multiple vertical rebound fractures occurring. I've read so many stories on this site of people who fractured within a couple of weeks of missing an injection, some after only a single injection.
I was on Prolia for two years and had to stop because of intolerable side effects. My doctor kept phoning me at home insisting I needed to take a relay drug as I had told her I was prepared to take my chances without one. So I ended up taking risedronate - and still fractured my sacrum as risedronate wasn't efficacious enough. My GP didn't know that and not did the endocrinologist whose care I was under. I contacted Prof. Lamy by email from hospital and he put me straight, but too late. Stopping Prolia after up to four injections as you say you can without using a potent relay bisphosphonate for at least two years is like playing Russian roulette. You don't want to risk it.
Hi ,
Thank you for sharing your thoughts and some research. It sounds like it was a particularly difficult experience to go through, so we appreciate your openness in sharing with the community. 😊
It is always interesting to read research around bone health, and actively seeking information is something we really support and encourage. Although we are unable to take part in specific discussions, we just ask anyone to be mindful that findings from one study might not tell the whole story. Regarding our current health information, as the ROS is a UK charity, we work very closely with medical experts to make sure our health information reflects the most up to date view, and current best practice in the UK. This may be different from other countries, and as noted, everyone’s health journey is unique, so it is important to discuss with your healthcare professionals when making any decisions about our health. We hope all our members can feel informed and empowered to make choices that are right for them.
For anyone looking for support or information about living with osteoporosis: theros.org.uk/information-a...
If anyone has any questions around moderation or our community, we ask that you message us directly in line with our guidelines.
Wishing you the very best on your health journey,
Lulu
ROS Moderator
Lulu, I'd be interested to know the source of the information on which the ROS bases its advice that Prolia can be safely discontinued after up to four injections (two years) without being followed by a relay bisphosphonate so as to avoid potential multiple vertebral fractures. Could you point me in the direction of a published research paper to confirm this?
Hi,
Thank you for your question. As we mentioned, we’re unable to take part in specific discussions. For our health information, we look at all research and talk to the top experts in the field in the UK to help us distil that broad evidence. This may differ from other countries. As health journeys are unique, we always recommend discussing any concerns with healthcare professionals.
If anyone has any questions around moderation of our community, we ask that you message us directly in line with our guidelines.
Wishing you all the best,
Lulu
ROS Moderator
I have taken alendronic acid tablets for 3 years with no obvious side effects as yet. It’s easy to take. I’ve no idea if it’s the right thing to do, but I don’t want my osteoporosis to get worse.
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