I was put on alendronic acid for osteoporosis but it had horrendous side effects so stopped taking it and talking to GP tomorrow but hoping I can achieve some protection from high dose Vit D3 and some calcium. Has anyone else on here had a problem with alendronic acid and found a good SAFE alternative?
I have the fosamax ready to take but very apprehensive about taking it. How did it affect you?
K2 and some minerals could be helpful too. Also, gelatine is another good thing to take. Some calcium tablets have the minerals added.
Exercise is recommended as well. Weight bearing exercises like walking are good.
Hi Chris like you I was prescribed Alendronic Acid , also Adcal-D3 Caplets. I am still taking the adcal but stopped the AA for the same reason as yourself. My sawbones has now prescribed Risedronate Sodium which I have yet to take. The bit you don't get told is that AA has a half life of approximately10 years and this means it will stay in your system for that length of time. I am still having problems after stopping AA for 4weeks.
The punchline is that all the medicines you can get are in the same family and will have the same side effects. Not everybody gets them however.
Hi I too have been on Alendronic acid for 5 weeks. I ache the next day but this is nothing in comparising to 2 previous spinal factors. Yes it stays in your bones for up to 10 years but this is what it is designed to do. It makes bone stronger, long term. Vitamin D3 and calcium will help replace the bone as it is being lost but, if your bone density is so low, these supplements will not prevent fractures. You have to weigh everything up and decide what is best for your future. I can put up with the aches and pains and walking like a zombie for a couple of days each week because I hope it will prevent further fractures in the future. Trials have shown this drug to be very effective in preventing fractures by improving bone density.
Hi Allison I could put up with feeling like a zombie for a couple of days after having taken AA for 5 months. But that is not what I felt like. I was in continual pain in my ankles,knees,hips znd shoulders which was very debilitating and I decided to stop taking the pills. I have had to take paracetomol to keep the pain away and now I am down to 2 paracetomol per day after 4 weeks off the AA.
As stated my doctor has prescribed Risedronate Sodium but I have not taken any as the side effects are mostly the same as AA.
THERE IS NO SAFE ALTERNATIVE to Alendronic Acid or any of the other medicines in the same group.
Just for Chris has your doctor sent or told you to have a dental check up? as these meds can cause problems in that area also. By the way mine didn't.
Yes to the dental part. My dentist is keeping a special check. I have also had radiotherapy for a brain tumour a few months ago and that can also cause problems with teeth. But so does osteoperosis. Everything aches for me too but having 2fractured vertebrae causes me more pain and I dont want more fractures. As individuals, we need to weigh upthe positives against the negatives and with the pain from the tumour and the aches in my joints as well as the pain from the fractured vertebraes, for me, prevention of more fractures is most important. There is no perfect answer. But, you might not have the same side effects on the RS. Your body could react differently and I could be worse if I took them. Good luck
Thanks for your reply Robin. I wasn't even given calcium or D3 tablets and it was only after reading up on it that I decided to take them off my own back. I'm finding the pain in joints is just begining to subside a bit (yes, been taking paracetamol) but the biggest side effect was dizziness! I thought I had an inner ear infection that was going on for weeks and weeks - the room was spinning and I nearly fell several times, and that's going now. It's 10 days since my last alendronic acid tablet. I don't want to go back on to any of them now!
Hi Alison, thank you for this explanation - it does all make sense and I CAN understand why alendronic acid was given. I am torn, I'll admit, but after the dizziness, and nearly falling over a couple of times (the last thing you want if you've got osteoporosis!) it's put me off somewhat but I am wondering if there is any alternative. I did read that a very high dose of Vt D3 helped reduce fractures and am rather hoping that might be a way forward for me.
My doctor never mentioned the dental aspect and I'd only had permanent crowns fixed on to two implants in April. But then I expect very little from my GP, having had endometrial cancer last year after being overdosed x 3 on estrogen, saying I had back problems and two of them telling me it was arthritis without even looking, then being sent for physio for arthritis only to find out the exercises for arthritis were probably doing more harm than good as I have ehlers danlos (hypermobility) and because of the osteoporosis, so I've just about given up on the GP.
I should have mentioned, I had horrible bloating too. Was constantly burping up acid for a couple of days after taking the tablet. Anyone else get that?
Hope this won't be confusing to others reading our posts, as I am "another Allison" (with one "l"
. You are right that the drug is intended to remain in the bones for bup do a decade, but that is also its formidable downside, as side-effects, which can be catastrophic, will not necessarily resolve in a timely way (or at all). I was advised by several doctors to take one of the drugs for osteoporosis; I have consistently refused, as my personal belief is they are far too dangerous, with data still accumulating about their dangers, to justify a hypothetical benefit. Which brings me to you last point, that "trials have shown the drugs to be very effective in preventing fractures." While there are data showing the drugs may indeed increase bone density in some (though not all) who take them, there is no documentation that can be definitively tied to actual fracture prevention. Prevention can simply be hypothesized, based on a statistical concept known as as "number needed to treat" -- in other words, how many people must take the drug in order for a single fracture to be prevented. From the numerous articles I've found, the equation isn't especially impressive; quite a few people must take the drug in order to (hypothetically) prevent even one fracture. There are no studies backing up how many people took one of these drugs and avoided fracture when they fell. A person who falls, especially someone who is elderly and/or frail, is likely to sustain a fracture, drug or no drug. Also, the increased bone density gained by some who take the drugs is not necessarily equivalent to what you refer to as "bone stronger, long term." In fact, researchers have begun to question whether the atypical femoral fractures that are increasingly being reported in conjunction with the osteo drugs may be occurring to the "stronger" bone actually being more brittle due to the action of the drugs. "Long term" use is now actively warned against by the U.S. Food and Drug Administration, as after three to five years (duration still unknown), the risk of catastrophic side effects increases while the drugs' benefits with long-term use remain uncertain. I would tend to agree with you that supplements are inadequate in prevening fracture. Osteoporosis and fracture remain worrisome realities. Hopefully, a much safer class of drugs will emerge before long so that there is a real alternative to those of us caught up in this conundrum. As of now, in my opinion, all of the drugs on the market are unacceptably dangerous.
Postscript: My post has numerous typos, as text that I was entering wasn't displaying correctly on the screen. Unable to find any editing option for the site. So, apologies.
Hi Chris, Assuming your symptoms are caused by your AA ( it certainly seems you've given it a decent run-in period), the next question is what can you GP advise now? There are a range of meds. for Osteoporosis (OP) all of which claim to be effective in preventing fractures and none of which are free from side-effects. Other contributions here ( from Robin, Alison and the other Allison!) have made very valid observations which I'm sure have helped. One contributor noted that " there is no safe alternative to this drug or this family of drugs". I would add that - there is no absolutely safe drug of any kind! Any med. from Aspirin upwards has side-efects for some of those who take it. Forget about OP drugs for a minute, and think of the meds. that are part of our daily life in modern society that are used widely - HRT, steroids, rheumatoid arthritis meds., pain killers (NSAIDs), inhalers etc. etc. Some of these and many others can have life-threatening side-effects. Modern medecine TRIES to balance out the benefits and the risks to a particular patient with a particular condition - and mostly, though not always, they get it right. From the patient's position then - they USED to just trust what the doctor decided. Until now. NOW often the patient may be better informed than their doctor about the recent research re. treatments and meds. Doctors (GPs especially) often just don't have the time to read, don't head off to big medical conferences abroad to hear first hand about what current research has thrown up . . .
So the difficulty for the patient, like ourselves is really a philosophical one - how can I keep myself safe? Well you can't - because LIFE ISN'T SAFE. So instead it's all about balancing risks. Statistically speaking, your drive to the pharmacist to collect your bone meds. (whichever one you take ) is a lot more risky than taking the meds. themselves. I've recently discovered that I live in a house with lead pipes that most likely been polluting my drinking water - for the past 35 years! Now look up the side-effects of lead injestion - truely awful. But I'm fine ( I hope) - though the pipes have to be changed. I think us patients feel tht we must check out (because we now CAN) and understand all the aspects of our condition and it's treatment - and it's a great burden and only tends to hugely increase our anxiety. Then we feel that we must 'have it out' with the doctor. I would say that knowledge is power, information is not necessarily.
My conclusion for you Chris is, find a well-recommended rheumatologist, talk to him about your reaction to the AA med., and ask about an alternative treatment. This is bread-and-butter stuff for him. Then take the risk and the med. AND if the next treatment isn't suiting you, go back to him/her for review. Finally, I am assuming that your OP is significant and you really DO need meds.
Good luck and kind thoughts - and sorry for ranting a bit. (I've been through all this already!). J
Dear Juno you have made some very good points in your post. I am assuming from the context that you are involved in the medical profession.
Doctors nowadays have so much choice of meds that they can prescribe for patients so they can look them up in the BNF to ascertain any special needs before just writing their prescription. You may gather that I dont think that GP's do a particularly good job in that they will happily write you a script and send you away.
For all who are reading these posts just remember that it is the squeaky gate that gets oiled.
good luck to all
Excellent advice. We all react differently to meds and even foodstuffs. It is very much a decision of weighing up the risks. There is a lot of bad advice out there. Arm yourself with the facts and decide what is best for you at this time.
Juno, I respectfully but strenuously disagree with both the content and the tenor of your post. The bisphosphonate drugs ought not be put on a par with "other meds that are part of our daily life" in terms of their risks, as NONE of those other meds have half-lives of up to ten years. While occasionally other drugs may have life-altering adverse consequences, the vast majority of side-effects from those drugs will dissipate, leaving the person who took them as they were before. Not so with the osteoporosis drugs. Osteonecrosis of the jaw does not always resolve; in fact, it's described as basically untreatable once it occurs. The other adverse effects associated with osteo-med use, including atypical fracture of the thighbone, atrial fibrillation, severe esophagitis, and visual damage, likewise cannot be presumed to abate just because the drug is stopped; they may be long-lasting or even permanent, again, due to the unparalleled half-life of the drugs. I do not think that "a drive to the pharmacist" or "lead pipes" are at all comparable as examples of how one must take risks throughout one's life. As to "a well-recommended rheumatologist" being a reliable source for whether one should or should not take an osteoporosis drug: my rheumatologist is experienced and generally trustworthy, but her views on osteoporosis drugs are boilerplate mainstream -- she seems unable to step back and weigh the evidence, pro- and con-, in an impartial manner. So I would not put my health in her hands any more than I'd trust it to any other so-called reputable physician. Your ending statement, "assuming ... your OP is significant and you really DO need meds," is not, in my opinion, well-reasoned. Not every serious, even life-threatening, condition or illness, including osteoporosis, lends itself to a ready solution. Drugs that are increasingly being linked to catastrophic, very possibly irreversible side-effects are not "needed" regardless of the severity of the condtion that they purport to treat. What IS needed is critical thinking and, hopefully, before long, drug options that could be used with a much higher degree of safety and therefore confidence than any in the current crop.
Hi Robin, first of all, I am indeed 'involved ' in the medical profession while not being a medic - just a humble paramedic. Many of my immediate family are doctors and I've worked in a hospital as part of a medical team for over 30 years. . . . And yes I agree with you that some GPs can be very casual indeed. I think a good GP is worth his weight in gold. I have a great one but I did a lot of moving around 'til I found her. . . .
Finally, great ref. to the squeaky gate! I am that, on occasions. But generally I say now ' what the hell am I paying this expert for - it I then go home and read, and agonise, and worry, and check, and worry more . . . ?' Give it a bash and see how it goes . . . I say. Kind thoughts. J
HI Allison, just a quick comment before bed - if my rheumatologist was "unable to step back and weigh the evidence, pro-and-con in an impartial manner" as you say of your doctor - I would say I don't think you've got a competent professional there and should certainly change. Trust is crucial to a doc-patient relationship, surely. And if a person doesn't allow themselves to listen to that doctor what exactly do you do? Like you say there are often not 'ready solutions' to medical issues, but then what - do you treat yourself? Or do nothing? Both risky also. I hope your optimism re. new OP meds. is warrented. I await with hope - while I take my Actonel. Take care, kind thoughts, J
I am hesitant to take fosamax although I have them already but not begun yet! I have never felt like this about any drug before. I take mega calcium which also includes vitamin D, magnesium, manganese and iron. I have read that K2 is also good and that is found in many foods. Another thing I have read is that gelatin is beneficial and you can get that by making soups or eating jellies containing gelatin.
My sister takes fosamax and knows people taking it who have had no issues but for some reason I am finding it hard to give it a try.
I may at some point in the future do so.
I have also consulted an oral surgeon and gastroenterologist for checking teeth and esophageas.
So I am doing everything I can to make the taking of fosamax as safe as possible.
Maybe I will have enough confidence to start soon!
Unfortunately you are correct. The fact that I have hesitated so much and put off taking fosamax for a few months now is not like me. I take drugs for diabetes, Crohns, etc and never felt like this before. The side effects for this one cannot be compared to the risks when taking other drugs. They are using faulty measures if they are doing what you say when reporting success rates. There should be proper studies undertaken.
My calcium tablets do state on the label that they do help treat osteoporosis so I think natural measures while not being a cure could help whereas fosamax does harm to some people.