Is there anyone out there who has been taking Osteoporosic medication for some years? If so -
What medication are you taking ?
What, if any, improvements has there been in your bones? (eg. bone density)
What, if any, side-effects have you experienced, and what did you do about this?
We have had long debates on this forum about about safety and effectiveness of osteoporosis medication but little first -hand information/comment from long term users . . .
You will get lots of this sort of info if you go onto the osteoporosis forum and post the question there.
https://patient.info/forums/discuss/browse/osteoporosis-1650
Sorry - should have thought a bit quicker! Just in case yo find navigating this site a pain - not suggesting you couldn't manage it at all.
Jeepers, what was I thinking? Thanks. J
Pred brain?
Yes, that and 'senior moments'. I'm lucky enough to have the two conditions - PMR and OP. Great fun. J
Hi Juno-IrI-Dub, I am very hesitant to take the Fosamax which was prescribed to me by my Rheumy, because of all the side effects.
I was diagnosed with osteopina, and because I have been on prednisone for a number of years, I should follow the instructions, although I am taking daily 1200 mg of Calcium, 500 mg Magnesium and 2000 INT units of vitamin D.
There are pros and cons......I don't know which ones would be worse.
I have osteopenia - I am considered NOT to need anything more than calcium/vit D supplements. There is a range of osteopenia, more than supplements are not needed until you are shown to be progressing towards and getting near to osteoporosis. Mine did not change in a period of 4 years taking pred at above 10mg/day for much of the time, sometimes considerably more.
It should all depend on an honest and objective view of the dexascan results.
Don't think this is pred brain, my epilepsy I think is under control but they think the 4 weeks on alendronic acid has now resulted in Osteonecrosis in my jaw. Waiting to hear about an operation to replace dead jaw bone. Sorry to bother you but It seems to be one thing after another. Thank you for your reply
I wish I could help but obviously not knowing your conditions I can only reply from my experience. I took alendronic acid for only 4 weeks and it has affected me badly. Not saying it would do this to you but please read up on it first so you can make an informed decision. Good luck
I can only give you my experience which may not be any help. I took 4weeks of alendronic acid and have suffered a painful jaw problem with it. This is rare but I suggest you find out as much as you can before you decide. Good luck
I'm sorry - I'm confused, I haven't replied to you, just to Juno.
I'm sorry to hear that - and so quickly after starting to take AA. That might be an indication that it was due to something else though. It is possibly a very rare side effect of pred or another medication. And it can happen anyway.
I do hope the operation is successful.
Hi Erika, just saw your post to me. Sorry. I totally agree with Eileen. Why on earth would you need an OP med. with just osteopenia?? I'd stay on my calcium and vit D and have a scan in a year (just to be sure!). Also, I'd thank my lucky stars that I don't have the dilemma of 'which, if any, med. is best for' me because side-effects, though rare, aren't to be wished for . .. . Kind regards, J
Hi angela, I'd stop it also if that was me ! What did the doc. say about other meds.? Do you know your T score (if you've had a scan. . ). J
Also intended to add Angela - I hope your jaw problem clears up fully. I know how awful even a toothache is and that would only be for a couple of days at most . .. Kind thoughts, J
Angela, this sounds really scary, that after only 4 weeks of AA intake you you started to have jaw problems. Did you take the ONE a week or daily tablet?
On one of the forums, can't remember which, someone posted that there had been a programme on Radio 4 in the UK about the use of alendronic acid and the conclusion was that it is NOT the miracle it was claimed it was and that there are risks. I can't say any more about the details because I didn't hear it and I probably can't listen to it on "listen again" because I live outside the UK. I assume the programme is Inside Health.
In Canada a few years ago they showed that bisphosphonates increase the risk for uveitis in older patients - symptoms are pain, redness and blurred vision. Ignored it can lead to blindness although treatment and stopping the bisphosphonate will avert this. But how often do we complain of such symptoms only to be told "It's the pred".
AA does lead to avascular necrosis and atypical fractures - we have several people on the forums with one or other. Even more who have problems getting dental treatment because they are taking AA. There has to be a good reason for dentists being so reticent about treating such patients.
The comment always is that the absolute numbers are small - but they won't be so small when you add them all together and it always concerns me when I have come across a few examples of things that are said by some of the medical profession to be very very rare.
Hi Eileen, I know exactly what you mean. The risk/benefit aspect of OP meds. are a huge dilemma for those of us who, unfortunately, have this condition. This has been the cause of a number of heated discussions betwen myself, Allison and others (on the OP forum). I have 'severe OP', really needed some treatment before I collapsed inwards . !. Did a lot of research on all meds. available, their pros and cons. . And independent well-controlled research studies over a number of decades show many side-effects but rarely extremely serious ones (but they DO happen). People don't often speak on invaluable forums like this about how well they're doing but they do need to report problems,( esp. if their doc. won't listen), find out if anyone else has found this or that problem, and ask for advice etc. . My concern is that some (physically) extremely vulnerable people may be unduely swayed by many scare stories and refuse any treatment -. thus maybe taking really serious risks with their own health. I'm sure you remember the work of Dr. Andrew Wakefield in the UK whose research appeared to show a link between the MMR vaccine and Autism. This caused panic in parents who then refused to allow their children to be immunised - and for a few years children suffered these illnesses, and some were left with life-changing problems. As you know then, it was found that Dr Wakefield's research had some shakey foundations . . My conclusion with over 2 years of extensive reading is that, even if the very serious side-effects (eg. ONJ) of some of these meds. are underreported and, let's say, are in reality 10 times greater than claimed - the risk is still perhaps less than that of sustaining a serious fracture or fractures. It really worries me to hear of people who have made a decision to instead 'choose natural methods' to restore bone density. Though an attractive option, it simply, has not been shown to work.
The downside of alll this is that I seem to sound like a spokeswoman for the pharma industry!. Nothing could be further from the truth. But I am hugely interested in both mine and others' perception of risk, how quirkey it can be - and how it can really affect our lives.
Kind thoughts, J
Wakefield and shaky - hmm, that's the understatement of the week!
I've been accused of being an advocate for Big Pharma too! Again - really NOT! I have no objection to people who do have serious and proven bone density problems being given bisphosphonates or anything else - but the emphasis has to be on the proven. Do the bone density scan - and then you may debate the need for medication. But NOT "just in case" - I was offered it on that basis, I didn't need it then and I still didn't need it over 4 years later. Luckily I got the dexascan - in my husband's department so also got to see all the figures - and had good reason for not taking the stuff.
The problem remains that doctors/pharmacists/patients do not complete the reports which demonstrate the true figures for adverse events - it should be compulsory. It is only with informed discussion that any of the aspects can be really appreciated. And there are far too many GPs who dish it out with no regard for the contraindications that a given patient has. There was an example of that on this forum just last week.
It is a rare side effect and the four tablets I took were 8 months ago but my Dental Consultant said it is what they think has caused this part jaw death. I'm not telling anyone they shouldn't take it but just that they should make an informed choice x