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!

[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.

[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.