Alendronic acid

[Sleeplessinlife]

Hi people. I'm into my 6 month taking alendronic acid. I've never felt so uncomfortable than I do now. I thought it was just my osteo tummy causing the stomach issues, but I seem to be getting worse. Locum sent me for ultrasounds which were OK. I want to try stopping the tabs to see if I improve. Has anyone done this ? No point in talking to gp first, they haven't a clue..

[Kaarina]

Poor you. You can stop taking the AA should you wish. Tablets are easy to stop. The drug will still be in your system though for a time. I would if it was me. At least you would feel you were doing something proactive. Hopefully you will feel better after a time of not taking them.

[Fruitandnutcase]

I took AA for four months then stopped because I had a lot of difficult side effects. For a variety of reasons I didn’t feel like myself at all. It didn’t take long to get back to feeling like my old self.

[Sleeplessinlife in reply to Fruitandnutcase]

Yes I've read your account. I want to do the same. I just feel I know my own body now and it's reactions. You have to have quality of life. I can't even excercise just now I feel so debilitated. That's no life..

[superbones]

I couldn't take them either but didn't persevere as long as you. Risedronate was even worse for me. I am about to have my second Zoledronic infusion having had no side effects from the first a year ago...

[Veganbones]

I can completely empathise. Started taking AA out of fear after a bad break and DEXA results showed osteopenia. Like you, I never felt so bad. Just didn't know my body anymore. It felt so counter intuitive as I couldn't exercise or eat properly. GP prescribed risodrenate as an alternative but they're still sitting in the drawer. I am focusing on exercise, good nutrition and listening to my body. I feel so much better. I've also asked GP for bloods to check calcium, vitamin and hormone levels which she agreed to, to make sure I am only supplementing if necessary. I feel in control again which I think is the biggest part of feeling better to me. Hang in there, you know yourself best x

[Sleeplessinlife in reply to Veganbones]

That's the thing, fear of further spinal compression has made me keep going, but I feel progressively worse. Thank goodness for a forum of people who actually understand

[Rooruby in reply to Sleeplessinlife]

Hi I was on and off AA for 10 years. I hated them I took for 6 months then left for a year or two. This continued until Sept 23 when I fractured my spine. Worse pain ever. As my t score in spine was so poor -4.7 I have now been put on daily injection Teriparatide nearly 3 months in and doing ok. Lots of aches and pains and other issues but I think they maybe I have osteoarthritis and EDS as well as fibromyalgia. Too be honest I blamed everything on AA and did myself no favours stopping. Saying that my osteoporosis has been severe for quite a few years so maybe the AA would never of been any good for me.

I think if you exercise and eat well it is your choice as you say quality of life is important. Good luck

[PoppyPaddler]

I also was very unhappy about taking AA and have recently stopped. But I investigated the diet and exercise route and also had REMS scan (interesting podcasts on Osteoscan). Due to have a discussion with my GP about my decision. I would say research the alternatives and make sure you're happy with your choices depending on why you were put on AA. Loads of information on ROS. Another interesting web site is Save our Bones I think in America. All the best.

[Gingertea3 in reply to PoppyPaddler]

It's very easy to stop the tablets for a bit. I had an issue and went to my GP. She told me to stop AA for 2 months and see if the symptoms went away. They did. I've not had any issues since stopping. However, I have been told I will 'have to take something for my bones'. I've been prescribed Risedronate but am really worried about them causing the same issue, or worse, as they are a bisphosphonate too. There needs to be much more support/counselling for people around the meds in my opinion.

[Sleeplessinlife in reply to Gingertea3]

Totally agree with you, we are a forgotten group who are just expected to get on with it and suffer, not enough education about risks for future health when we are younger and apart from the R.O.S and fellow sufferers we are abandoned

[Mongoose59]

Hi sleeplessinlife

I was put on Alendronic acid to start with and had headaches, musculoskeletal aches. Stopped taking them after 6 weeks. I was switched to Ibandronic acid once a month that was a lot better but still had these side effects to a lessor extent.

[Greengen1]

I was having stomach issues with alendronic acid. I kept feeling sick as well. I went to see my gp who referred me to a Rheumatologist but in the meantime put me on Risedronate . I have since spoken to the Rheumatologist and he is putting me on injections ( can’t remember what ) so I am just waiting to start them. That way the treatment bypasses the stomach. I have also read about infusions which bypass the stomach too. Get in touch with your doctor and tell them. Good luck

[Lovemybones]

I have just started electronic acid. Can you let me know what side effects was caused

[Sleeplessinlife in reply to Lovemybones]

Not everyone gets side effects, by I'm definately having increased abdominal discomfort and muscle aches. I also find it's worse in the first few days after taking tablet. I don't get reflux, always stay upright and drink plenty water. Think my intestines just hate it!

[questionably in reply to Lovemybones]

hi, lovemybones. If you experience reflux or stomach/intestial pain, stop the medication and call your physician. Most people experience some joint inflammation with pain or discomfort and decide to tolerate that effect. While it is better to have some joint pain than to fracture, there are other medications. Don't suffer quietly. I hope it works well for you without side effects, as it does for some.

[Lovemybones in reply to questionably]

I will carry on for a while longer

[Choccy9]

I stopped taking Alendronic Acid after only one month due to digestive problems. My GP has given me an alternative biophosphonate and if that doesn't suit me they will start injections. Just tell your GP what you want

[Soaylady74]

I was on Alendronic Acid for nearly two years, kept complaining to my GP as was having gastric problems - she told me to continue - then I had trouble with swallowing & choking - GP then told me to stop and said I had "erosion of the esophagus" (Got it checked out at the hospital for cancer or lasting damage) GP didnt seem to know what to do so - I am now not taking any meds and on the waiting list for the Osteoporosis clinic. Watch this space!

[GrandmaSkunk]

I stopped taking them after 18 months and started Risedronate, much better no side effects .

[NarrowboatLady]

I stopped Alendronic Acid after one tablet. 4 days after taking it I had a large lower gastrointestinal bleed.

Colonoscopy revealed I had Diverticulitis. But cause of bleeding “not known”. It’s too much of a coincidence for me so I won’t be taking Alendronic Acid any more.

My first osteoporosis appointment isn’t until June. My GP went through hoops to get permission to prescribe Alendronic Acid. Not sure what happens now.

[love42france in reply to NarrowboatLady]

I have diverticulitis and was put straight on annual infusions of Zoledronic acid in the same family. 2.5 years in and apart from feeling very tired for a few days after infusions no side effects. I take Omeprazole in a low dose daily to control gastric reflux and it is all almost pain free. My spinal pain has reduced dramatically and I take care how I move. Diverticulitis and Crohn's disease are the two illnesses now classed as IBS. You can have one or both for a recognised IBS. People seem to understand IBS better than the other two.

[Trec in reply to love42france]

Crohn’s disease is not IBS iand is very much more serious as is Colitis. They are IBD illnesses, Inflammatory Bowel Disease with a definite diagnosis whereas IBS is Irritable Bowel Syndrome which just means that no other illness has been diagnosed for the symptoms. IBD is very much more serious than IBS even though the latter can be painful.

[Caradoc1a]

I have annual infusion of zelodranate instead of tablets. Works for me. Just make sure any invasive dental stuff is dealt with first. I also have diverticulosis

[Salcombe]

I was the same as you. GP put me on Omeprazole to counteract the side effects of alendronic acid. My discomfort increased. So I refused to take both tablets and have never regretted it over the last 5 years.

[Trec]

Oh goodness, that sounds awful, I am so sorry. I’ve already posted before about my reaction to AA after being given it in the Rehab hospital in July after a pelvic crack due to a trip in my kitchen. I had immediate diarrhoea which wasn’t helped by being given a Senna tablet the previous day which having IBS-M and Diverticulosis I would never voluntarily take. However that effect wouldn’t have last but the pain and diarrhoea continued even though I stopped taking the AA after the 4th which I took once home and ended up with being rushed to hospital with Colitis a few weeks later. My GP arranged a SPEC scan in December as I was in denial about having Osteoporosis but it proved I did so she said to retry the AA then if the same happened the other option was Denosumab which seems to present other issues, My GP isn’t aware that I haven’t yet been brave enough to try the AA and everything I read here makes me even more reluctant. I’m also worried about the impact on future possible dentistry which might occur. I also can’t take calcium as I’ve either had or still have a kidney stone. This is a big worry playing on my mind every day so I know I have to face it.

[Sleeplessinlife in reply to Trec]

I feel I've given it a decent try. Both my sister and sister in law take. A A, and have been coping fine. I feel so nervous about telling a a gp I don't think it's doing me any good. They were so dismissive of my back pain last year, (eventually showed 7 compression fractures), I have no trust in them. Every time I go it's a different gp, usually locum, also like you, I can't take calcium, too constipating, and I have gallstones which I don't think help either

[Trec in reply to Sleeplessinlife]

Oh I’m so sorry. I haven’t been back to the GP since her text in late December telling me the scan was positive and to continue with the AA for 5 years then have a revue! I don’t want to return - hard to get an appointment anyway! - until I know more about the alternatives as the one she mentioned, Denosumab, althought convenient to have, concerns me as appears to present with other problems though none seem that reassuring! I have a couple of friends who have never had a problem with taking AA and to be honest make me feel a bit of a wimp but we are all different and I never want to feel as ill as I did taking them. I have Spondililothesis in my spine which is deteriorating so my spine is also of concern but not as much as your’s must be. It’s so hard isn’t it and I feel we are not that well supported. I really appreciate this site and everyone who shares here. Best of luck and do keep sharing how you get on.

[questionably in reply to Trec]

Trec, there are other medications. AA can be irritating to the entire digestive tract even causing esophageal and epithelial erosion--risking throat cancer and stomach ulcers. Don't be brave.

I think you are wise to avoid Prolia. Even though some have success, the problems with Prolia and atypical fractures, plus osteonecrosis of the jaw, and the difficulty in safely getting off the medication. And then the risk of side effects, which you are stuck with for six months to a year.

I wonder why you all aren't being prescribed Forteo and Tymlos initially. It must be the cost.

[Trec in reply to questionably]

I confess that Prolia does sound problematic especially the issue with the jaw and tooth removal which I gather is greater with this than AA. Despite my dentist saying mine are fine I know they aren’t that great and anything could happen at anytime - funny how aware I am of nerve twinges now!

Yes I understand that stopping it can be difficult too and can lead to having to take AA eventually anyway. I didn’t realise that the side effects of Prolia can last so long afterwards though. My cousin has been prescribed Romosozubam by her consultant - I don’t have one! - but I’ve read that you take it for one year only so I don’t know what happens after that. I think the issue with Teriparatide is cost and seems to be only prescribed when all other options have failed in some way. It also build up calcium which would probably count me out. Thanks for helping.

[TandemTime in reply to Trec]

I would use the calcium calculator on the osteoporosis society website it's really good to check what to eat.

[Trec in reply to TandemTime]

Thanks. I haven’t been told to change my diet in any way in relation to the kidney stone nor since being told by my GP to stop the calcium tablets so I think the issue is just the tablet increasing the calcium too much rather than restricting it in my diet.

[TandemTime in reply to Trec]

I have had a kidney stone...so are now a bit nervous of the tablet form. I am trying to do it through my diet. That's where the calculator helps to check I am getting enough calcium...😀

[Trec in reply to TandemTime]

Oh I hadn’t thought of it in that way so thanks again. Yes,it’s a bit worrying when we know that calcium is needed for bone health plus more, especially teeth if having to be wary of dental work while on most of the osteoporosis meds. I’m not sure if my kidney stone is still there or not as haven’t been aware of it passing but either way the GP said I can’t take the calcium part of Adcal and has prescribed just the D3 tablets instead. I’ll keep a check on my other calcium intake now as you suggest, thank you.

[TandemTime in reply to Trec]

It's all such a balancing act. I am having lots of Kefir, almonds and sesame seeds. Plus I am lucky I like tinned sardines, figs etc. Good luck and hope you never get troubled by those stones!

[bluebell99]

You could ask to be referred to an osteoporosis specialist or clinic. They will offer different treatments and explain the side effects. In the end it is your choice.

I cannot take AA as I have gastritis, and I looked at the alternatives and decided zolendronic infusion, which happens once a year. After a very shaky start with the first one, I swore I would never have another. When the year had passed and I was due the next one, I phoned ROS for advice and scoured the forum here.

I have now had three infusions with less side effects each time. I had a spinal collapse when osteoporosis was discovered. My back feels a lot stronger and I am glad I persevered.

If you go down that route, drink plenty of water the day before and on the day, and ask for the infusion to be slowed to 30 mins. Take a couple of paracetamol before you go.

Once done, you are clear for another year, no jabs or tablets to remember!

Good luck!

[Trec in reply to bluebell99]

Thank you so much. Everyone’s experience is so helpful.

[Jimbow27]

I stopped after 1 week!! I never felt so ill, painful joints, heartburn, could not sleep. Burning in my ailmentey track and more ++I am a, retired Registered Nurse and I can usually tolerate most medications. But not AA. I am stopped for good. There is very little alternative for men. Ladies can get an injection annually. or Monthly.

At 78, I am not going to mess my body about. I have other medical issues and I don't want years of unacceptable pain and lack of sleep with joint pains.

Joe

[Trec in reply to Jimbow27]

At 85 I can understand your reasoning and am rather thinking that way myself. I am in permanent pain from my spinal pain and other conditions I leave the house only when essential and I do wonder if any medication will be able to build up quickly enough to be effective in avoiding another break. I just wish I’d not carried a bag of shopping in each hand when I tripped as they added to the force of my landing causing the pelvic crack so I’d still be living in ignorant bliss!

[love42france]

zoledronic acid is similar and can be given via a short transfusion once a year. I have gastric problems so was put on this. With regard to medics, I am lucky I live in France where the health service is amazing even though it is stretched. I chose my own Rheumatologist and she gave me prescriptions on the spot. I booked the nurse to do it at home plus Vis D3 and calcium. My GP has to do what the Rheumatologist said and I get all the notes myself. Short (3 month) waiting lists for specialist and GP’s appointments via the web. Currently seeing my GP monthly for maintenance of my high blood pressure that is now under control. Miss one GP appointment and they throw you off their list unless there is a good reason. Patients also have to stick by the rules. Best of luck.

[Hairoil]

I’d go back to your consultant/GP and say it affects you. I did as I felt dreadful. and am now on annual infusions, there are alternatives and quite a few people can’t take alrndronic acid. . Good luck