Relief from side effects of alendronic acid?

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I am posting in desperation on behalf of my mother. She is 72 and was recently prescribed alendronic acid, as a preventative measure (her bone density is fine, she does not have osteoporosis) because she takes steroids for polymyalgia rheumatica.

Before taking the alendronic acid her mobility was fine, she was able to spend a day out walking around, do shopping etc. She took 3 tablets, one each week, and after the first she started experiencing pain deep in her buttock, which radiated down her leg. After the second the pain became more severe, and she was finding it hard to walk for any length of time. After the third she started using walking sticks to walk anywhere, even from room to room. She then stopped taking the alendronic acid, realising it must be this that caused the pain. She took her last one about a month ago and still has severe pain in one leg, so bad she is unable to sleep much at night, cannot stand up for any length of time, and is unable to walk very far. She is effectively housebound/wheelchair bound, after having been perfectly fine before.

None of the doctors she has seen have been able to help - she is on codeine and paracetemol 3x a day and gabapentin. The only other thing the docs have offered is sleeping tablets but she is reluctant to take them even though she is desperate to be able to escape the pain and sleep!

Can anyone offer us any hope at all? Any idea how long this poison takes to get out of the system? Anything she can do to help relieve the pain? Please help!

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  • Posted

    I'm afraid I can't help, but would like you to know your mother is not the only one going through this. My

    father (74) also has PMR and has been on alendronic acid for a long time. His pharmacist changed the

    brand three weeks ago and since then he has been housebound and in extreme pain: legs, groin, head,

    arms, breast bone. He took the first tablet and had all these symptoms which faded within a few hours,

    the following week he took the second tablet and was bedridden. His PMR pains have returned for which he has been allowed to raise his steroids, but any exertion and the alendronic acid pain flares up. He is

    undergoing tests for possible other causes, is on antibiotics for an infection they say is now showing in his blood tests and has been banned from taking alendronic acid for three years. He is getting frustrated as

    he says the pain came as soon as he took the wretched tablet. I/we too would like to know how long it

    takes to work its way out of the system. My father is allowed paracetamol, but it doesn't do much. I have huge sympathies for your mother as we are getting nowhere fast. Meanwhile my father is aging fast and

    becoming increasingly helpless and distraught.

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  • Posted

    Hi Beulah, I'm so sorry to hear your father is suffering too. You must be feeling the same as me - helpless and angry that something which is supposed to help has caused this much pain and suffering. I have searched the internet and found loads of similar cases but no one updates with how long it took to go away. I wonder what brand your father was switched to and whether it was the same as my mother's, I don't know which she took but I will ask her next time I speak to her. Please update if you find anything that helps or if your father's symptoms start to ease. I hope he starts to feel better soon.
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  • Posted

    I will check the brand, he'd been taking the previous one for years with no problems. I spoke to his GP who likens it to the issues surrounding immunizations, stating that links are drawn between the vaccine and, for the sake of argument autism which would have presented itself anyway. Am not convinced as the timing is too coincidental and as you say, the internet is full of patients who are in the same situation. I will absolutely keep you updated. At the mometnt the steroids have been upped to 10mg and it is helping, but any slight exertion and the symptoms come back. He has more blood tests tomorrow and sees his GP next week. I also hope your mother starts to feel better soon, this is truly miserable for them.
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  • Posted

    I asked my mum what company made her AA, it was Accord Healthcare Ltd. I wonder if it is the same brand that your father took. My mum is still in constant pain and can't stand for long - my parents went out and bought a wheelchair yesterday :-( If you'd told me 2 months ago she would be in a wheelchair now I wouldn't have believed you. Less than two months ago she took my kids to a farm for the day, walked round all day no problem at all, now she struggles to walk from one room to another, with two walking sticks! I think that GP is wrong, there are far too many people having side effects like this for it to be pure coincidence. My mum goes back to her GP tomorrow, I don't suppose it will help though, no-one seems to have any answers.
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  • Posted

    I will have another go at finding out from dad, but he is very confused at the moment due to the tiredness caused by the constant pain. He says the brand that he took "happily" for years was Tivac, or something like that, I will check that tomorrow also. The brand the pharmacist changed it to (interestingly around the time your mother fell ill) he was told by the GP to return to the pharmacist as soon as he presented with the symptoms at the surgery and told never to take AA again. Like an idiot I unthinkingly returned them for him. I will try to find out from the pharmacist, if he will tell me. They are still insisting that it can't be a reaction to the medication even though it happened within half an hour of taking the tablet, on both occasions. As I said, the first time the symptoms faded, the second time they stayed. He finishes his antibiotics for the supposed infection today so I am curious to see what happens. The AA pains have faded, but his PMR is grim. He had more blood tests today, they are looking for cancer and refuse point blank to see a connection. As far as I am concerned it is rather like someone dying in a train crash and saying the crash had nothing to do with it. He can barely walk to the end of the drive, struggles to get out of his chair, can no longer potter in the garden or do most of the jobs he used to do. Like your mother he was so active within the constraints of his PMR. We have an appointment next Thursday for the results. I will dig a little and try to find out the brand. Something is not right here. My sympathies to your mother, we are looking at stairlifts. Good luck tomorrow.
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  • Posted

    Hi Mazjak, apologies for the silence, things have been hectic. Thought you may be interested in an update. We can't track down the AA brand, unfortunately. The GP still won't accept that AA sparked all of this off and has diagnosed atypical pneumonia on the basis of chest x-ray, blood tests showing an infection "somewhere" and elevated liver readings. Curious it started within minutes of taking AA. Anyway, dad has taken his last antibiotic today and so we are waiting with baited breath to see what happens as we are expecting a deterioration. The breathlessness, migraines, chest, shoulder and arm pains have gone, but the PMR is still bad and they won't up steroids as they skew blood results. He is more mobile, but still pretty much housebound. Back to GP on Thursday as he is still hunting for cancer of liver and/or lung. Get the impression he wants it to be anything but AA. How is your mother doing? Have been thinking of you all.
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  • Posted

    Hello both, if you are still 'looking in'. I came across this thread by accident when looking up another drug. I just wanted to mention that as a past sufferer of both PMR and GCA, I was never prescribed Alendronic Acid, even though many medics put their patients on to it automatically alongside the steroids as a preventive measure for osteoporosis. A big question mark then arose over AA and the risk of problems with the jaw bone and hip area, and a recommendation was issued that anyone taking AA should have a break from it after 5 years. It was also recommended that anyone about to be treated with AA should have any dental work carried out first. Many dentists will not carry out extractions for those patients on AA but will refer them to hospital.

    I arranged a private DEXA scan following my PMR diagnosis and the commencement of 40mgs of steroids to get a base reading - result: normal. I then had another DEXA two years later - result: hips normal, spine very slightly into the osteopenia range (the stage before osteoporosis) but no treatment required. Yet a further two years down the line and at that time one very low steroid dose, the third DEXA showed just a 0.1 deterioration in the spine but still within the osteopenia range. I have no doubt that this is just a normal ageing process (I'm 71) rather than being connected to the steroids.

    I would not be prepared to take drugs such as AA without underlying proof that I was suffering from osteoporosis, and even then I would hope to find an alternative.

    Have either of your parents had blood tests to check their Vitamin D levels? When tested, I was found to be deficient with a reading of 36 (normal is somewhere between 75 and 150-200 depending on which PTC you are under).

    I was given a 3-month pure Vit D3 supplement and my reading rose to 89. Vitamin D benefits our bones because it allows more calcium from our diet to be absorbed into them. Plus it has many other important health benefits to our bodies.

    I do hope this helps.

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  • Posted

    I was prescribed Alendronic acid as I had test for osteoporosis a couple of years ago and there were signs of it starting. I didn't take them for long as I read about a scare with heart problems from it. Recently asked by the doc why I wasn't taking them and recommended to restart. I have taken two tablets and my calcium chewables and have started a week ago with bad as I thought muscle pain in my left thigh. It then travelled into my hip area and around the buttock found it difficult and almost impossible to walk. It is easing a little now and I have taken no tablet this week but the whole of my hip area right around my body is very painful Is this likely to go or am I like a lot of people on here going to be stuck with this for life. Doc blames my arthritis but I have had arthritis since 1994 and know the difference in pain. She also told me it is my body telling me to slow down. I have had blood tests also so will await the results next week!!

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  • Posted

    Hi MrsO and mo 69, yes I'm still following the thread. Thank you, Mrs O, for the info concerning Vit D, mentioned it to my father who may raise it with his GP when he sees him this week. As for the situation you are now in mo 69, you have our utmost sympathies. To update on my thread from weeks ago, my father is still having regular blood tests and chest x-rays. Interestingly, his GP who was so insistent that it was pure coincidence that these symptoms started within a few minutes of taking the tablet and it could only ever have been atypical pneumonia or an infection of sorts, now admits it could have been toxic shock from the medication! He is back on his feet now, but it has been a long slow process, he was completely housebound and could hardly get up and down stairs let alone get out of the house. He feels that the AA is on its way out of his system. Am not sure if he will ever get back to where he was before he took this tablet. I would be inclined to go with your instincts. My father suffers from fibromyalgia and PMR, has done for years, and he knew that none of this resembled those conditions. Doctors not interested. Also, have met a number of people in the past few weeks who are reacting to this drug whose GP's are denying a connection. Hope your hip improves. My father would rather risk osteoporosis and all of its side effects than go through the last three months again.
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  • Posted

    Hi MrsO and mo 69, yes I'm still following the thread. Thank you, Mrs O, for the info concerning Vit D, mentioned it to my father who may raise it with his GP when he sees him this week. As for the situation you are now in mo 69, you have our utmost sympathies. To update on my thread from weeks ago, my father is still having regular blood tests and chest x-rays. Interestingly, his GP who was so insistent that it was pure coincidence that these symptoms started within a few minutes of taking the tablet and it could only ever have been atypical pneumonia or an infection of sorts, now admits it could have been toxic shock from the medication! He is back on his feet now, but it has been a long slow process, he was completely housebound and could hardly get up and down stairs let alone get out of the house. He feels that the AA is on its way out of his system. Am not sure if he will ever get back to where he was before he took this tablet. I would be inclined to go with your instincts. My father suffers from fibromyalgia and PMR, has done for years, and he knew that none of this resembled those conditions. Doctors not interested. Also, have met a number of people in the past few weeks who are reacting to this drug whose GP's are denying a connection. Hope your hip improves. My father would rather risk osteoporosis and all of its side effects than go through the last three months again.
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  • Posted

    Oh dear, I have been on Alendronic Acid for 6 years with no problems, now I'm scared to take it. oddbiddy
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  • Posted

    Good morning oddbiddy. Love the name, by the way. Firstly, don't panic. You need to know that my father took AA for many years - more than 6- with no problems whatsoever. However, in his case, he only ever took the TIVA brand (at least I think that is what it was called). The pharmacist, not the doctor, changed the brand, and it was the makeup of the different brand which caused all of this, and that is/was the problem. He had almost all the side effects, the doctor took him off AA immediately, and then refused to admit that a change in brand could cause a problem, IN SPITE OF THE FACT, that same doctor wrote all across my dads notes years ago that due to a severe reaction to a change in brand of a thyroxine drug, he must only ever have one particular brand. Odd, really. He then insisted that it was pure coincidence that within minutes of taking the tablet my dad was invalided. He had taken the tablet the week before and had the same symptoms, but they had faded so he decided not to tell me. The second time the same happened and the symptoms didn't fade leaving him in the mess he is now in. As an aside, the GP did say he had taken the drug for too long as the advice is only for five years and dad had been on it seven or eight. Don't panic.
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  • Posted

    Hello oddbiddy. Yes, as beulah has said, "don't panic". Many people have taken it for very many years without problems. However, the latest guidelines recommend a break from AA after 5 years, and certainly my friend who was diagnosed with Osteoporosis many years ago is now on such a break. If in any doubt, you can ring the National Osteoporosis Society helpline for advice, and perhaps they may be able to answer others' questions as to how long it takes for AA to leave your body after discontinuing it. There is lots of very useful information about AA and it's side effects on their website, including mention that people on steroids might be more at risk with this drug.

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  • Posted

    Hi Beulah and Mrs O, well I am glad I strayed into AA territory as I have been on TIVA for 6 years and a few times the chemist has given me a different kind. Anyway now I know I should come off it for a while and will do so. I will read up on it and see how long I should gie it up for. Doctors are usually much too busy to keep tabs on people so nobody ever mentioned this to me. Then again does he know? We tend to think they are the font of all knowledge but with millions of drugs around if they studied them all they wouldn't have a life. So thanks for the information, June/oddbiddy
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  • Posted

    Alendronic acid is dangerous. My mum had a stroke a week or two after beginning to take this drug. Her doctors at the hospital said to her that the probable cause of her stroke was the Alendronic acid. My research on the web found that the drug increases risk of stroke by 50%! There are many safer alternative drugs.
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