Iam new to this forum but wanted to tell my tale of woe since I was prescribed AA , I went through the menopause early at 42/43 and had two breaks within 6 months of each other. On my second break I was advised to take AA because I was considered high risk Osteoporosis. I was never offered a Dexa scan infact I didn't even know they existed. Anyway I have taken this drug for probably around 16 years I think or more, unsure really. But I do know that I have suffered and still do with Gastric Reflux , Chronic heartburn, Aesophogitis, (inflamation )Duodenitis, (Inflamation) had a polyp removed ) Scleritis, inflamation of the eye) Cholyitis, (gallbladder removal this year in April) Numbness and tingling down my left side in arms and face and lots of cramping in leg and feet. Headaches, Aching bones, Excessive bloating, Had 3 Endoscopys plus recently just had a Laryngoscopy because they thought I had throat cancer as I almost lost my voice and was very hoarse.
I have been back and forth to the doctors for the last 7 years or more complaining about all of these symptoms and it has only just come tolight because my name flagged up at the surgery that I should have a Dexa scan because of the length of time I have been taking AA. This was June and now my results were in , I had a phone call from the hospital which was very weird phone call, although they would only say my scn results were not too bad, but asked me a series of questions which were linked to all my ailments, they admitted that they were side effects of the drug AA. They were concerned how long I had been taking this drug and asked why I had gone on the drug. I told them what I knew. They said the problem was that the results from the scan they had now and that because I had never had one before they had nothing to compare it with. They even asked if I had ever been told if I had Rhuematoid arthritis, I replied no. They also said that they had never known anyone on this drug for the amount of time I had been on it and that recently they had found out that it can have the opposite effect on the bones and make them more brittle.
Anyway I went to the doctors very upset and angry that after all these years that not one person in the doctors had ever made the connection of the side effects and my ailments. It takes the biscuit when the doctor told me that I had to put a complaint in to the practice. I have been on so many different proton pump inhibitors to help with my acid and take Esomprazole and Ranatadine to try and combat the acid. But all of this could have been avoided in the early days of taking AA. Another thing that is annoying is that when I asked if I could have a Dexa scan in the past I was told no, we do not want to put that radiation in your body at your age. Iam 64 now and now have Osteoporosis of my left hip in the Femural bone and Osteopenia on the right hip. I do Pilates and although the doctors and hospital want me to do the class, I am told not to bend forward incase I break my Femur. I have been in agony the last 4 weeks as I have developed Bursitis in my left hip.
Anyway ladies take a leaf out of my book, do not take this drug it is lethal. I have since been offered an alternative drug that does not upset my stomach. I have yet to take it. But I would like to know if my symptoms will get better now that I am not taking AA does anyone know out there?
Thanks for reading my story.
Written by
Rosssue
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Do please put in a complaint about your GP practice - as they have caused a lot of your problems. AA should not be used for more than 5 years continuously although that is a relatively new finding. Had you been put on HRT after your early menopause the AA would probably not have been required. And a dexascan is a VERY low radiation dose - often less than a chest x-ray.
I'm not a doctor but I think that once you stop the AA and it is treated, your reflux should improve. But the people to ask are the doctors at the hospital.
This is not something I say lightly because I don't hold with lawyers chasing the NHS but I would also seriously consider seeking legal advice.
I do hope things will improve for you - and I would like to hear how you get on. All the very best.
Hello Rossue, Thank you for sharing your awful story. Your experience is utterly outrageous and I hope you will take legal advice. In effect you have been assaulted repeatedly for 16 years. Why did no doctor trace all your symptoms back to this drug?
I cannot advise on where you stand medically - but I would be seeking another doctor.
First things first. get yourself to an orthopedist. That is a doctor that specializes in bones. Get evaluated, get a second and maybe even third opinion of what your options are.
Then, by all means, seek legal advice. It's not just about recovering some compensation for yourself. It's about helping other people who have been harmed by this drug, and others who may be harmed in the future when it is used inappropriately.
And we can all take a lesson: ask about every drug we're taking at every consultation. Everyone is human, and anyone can overlook something on a chart or in a file. Bring a list of your drugs and dosages, and make them read it.
Also, give your pharmacist the list every time you pick up a prescription, and make them go through it. They're often far better versed in drug interactions and side effects than are other medical experts.
I hope you find relief, and I hope you find improvement.
So sorry to hear your story. Completely infuriating!!
You might want to check out the post on this forum from a day ago by Ligtocicara on PRUNES AND BONE HEALTH. I don't know if there is any research, but maybe they might help rebuilding some healthier bones.
Thank you. I akready eat raw prunes, cos I like them, spinach and leafy green veg and walk a lot so hopefully doing the right thing after dropping AA a month ago, Just need to see GP to ask for a Dexa scan.
I read this post with horror, relating it to myself. I thought about the frightening time when I first felt my body taken over by PMR, the pain, discomfort and fright at what was happening to me at 60, and then my young doctor's solution to prescribe Prednisolone, AA & calcium/vit D. I didn't question this medication although I did read the literature accompanying it. Now I have learned to ask further questions but 4 years ago I didn't. We tend to trust in Drs advice until there's a reason not to. My Pred dose is now 5mg and I have review appointment next week to 'ask' to stop AA. I now know that I wouldn't take it if I had my time again, but that's hindsight isn't it?
Yes Parijm I think we have all been there where we have just taken the advice of medical staff because we felt they knew best. That is what has been so helpful with this forum that we have information and can question advice etc given by GPs in an informed way. Thank you Rossue for sharing what has been a terrible series of events and can only reiterate advice given and best wishes for the future. X Jackie
Hi Rosie,l am so pleased that you have mentioned the side effects you have suffered from taking AA. I found that it caused dreadful bloating and acid reflux. I mentioned this to my doctor and the pharmacist,they each said l should take it as l am on prednisolone,and that there was no alternative .l am ashamed to say l have stopped taking it.,l just could not cope with the side effects.l am yet to tell my doctor about this. I also found that my feet and ankles kept swelling up.This has not happened since l stopped taking the AA. I hope you will somehow get over the dreadful health problems you have suffered thanks to the AA, but cannot offer any certainty myself,hopefully someone else can. Apologies for missing two s,s from your name above.
Your story is awful, but just to put the other side of this. I requested a dexa scan in my mid-forties after an early menopause and a family history of osteoporosis. The scan showed my bone density was ten years older than I was and I went on AA for five years. I had no side effects and scans every two years, which showed that the decline had stopped in its tracks. I came off AA for two years, another scan showed a slight deterioration so I did another five years on AA and came off again. My scan by then showed an improvement from the scan of twelve years before. Then came PMR and pred, so I went back on AA while I was on the Pred (I'm now off and have been for six months) and again had absolutely no side effects from the AA which I presume has done the job protecting the bones. I have another Dexa due next year. So, while I know it doesn't work for everyone, please don't write it off completely. It's a good solution for some.
It may increase bone density - but that does not necessarily reduce the risk of fractures. People with low bone density do not always have fractures, people with normal or high bone density do. And long term bisphosphonate can lead to the development of cracks in the bones which increase the risk of other sorts of fractures which are very difficult to get to heal.
I suppose as you were started on AA only about 5 years more or less after it first went on the market we can excuse the doctors for being unaware that it wasn't something to be taken indefinitely. But there has been so much more clinical and anecdotal evidence gathered since then, pointing to the fact that this medication and related ones should only be taken for two or three years before bad effects begin to negate any benefit, someone should have caught your maltreatment years ago. Especially as you've suffered so many side effects which are well known as result of taking AA.
I highly recommend that you research natural means of healing your bones. In your position I'd be extremely leery of taking any other osteoporosis drug. Certainly you must not take anything in the bisphosphonate family. And although some people seem to like denosumab (Prolia) it is even more poisonous to some of the bone-remodelling cells than bisphosphonates and also must not be taken indefinitely.
Doctors may disagree, but there has been research proving that nutrition can help improve bone density.
And weight bearing exercise is also very important. As you may have, unfortunately, developed microcracks in the bones from the long course of AA you really should consult a physiotherapist knowledgeable about OP who can help you develop an exercise program that will not harm you as you start your road to recovery.
Yes, understand all the above. My doctor was clear that AA should never be taken for more than five years without at least a 12 month break. I just didn't want people assuming that it was always a bad move, as I think it has its place. Obviously I also took Calc and Vit D at the same time and continue to do so.
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