Osteoporosis/alendronic acid

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

Juno: I find most doctors to be opinionated and often biased; the rheumatologist wasn't a notable exception. I always "listen" to the doctors whom I see, but then I reach my own decision, as I'm sure you do as well. If I don't think there's a viable solution to a medical condition, e.g., osteoporosis, then, yes, I "do nothing" -- but keep in mind, that is a choice too: the choice of no treatment. The Hippocratic Oath, "First do no harm," seems just as applicable to patients' own choices when deciding whether the available treatments would pose more risk than benefit. Lastly, I am not, in fact, optimistic about new OP meds emerging in our lifetime. They would have to emerge quite soon to help us, seeing as none of us are exactly kids anymore! Best, Allison

Juno, you are so right!  And yes, googling all the studies about it does make you more anxious.  I always like to know what my options are, but when all of those options have a risk of some sort it's difficult.  Having said that, after being overdosed by three times the recommended dose of estrogen for well over a year and then getting endometrial cancer, I'm far less trusting of a doctor and it instilled into me a need to check everything they give me, and I'm grateful that option is there through the internet BUT still feel a bit torn on this.  Husband keeps saying don't take AA or anything like it but I'm not sure he's really taken in the risk of more and more damage through OP.  What makes it more difficult is that some studies say the high dose of VitD3 and calcium will save some fractures but it all depends on what study you read and the amounts they used for the trial.  But GP is phoning today and I'll find out numbers etc. which might help make a decision, as well as alternative treatments on offer.  I feel SO stupid - I went to the rheumatologist a couple of weeks ago and he asked how I was getting on with the AA that the GP had put me on and I said fine, not realising just how many side effects I was getting from it (thinking they were all unrelated!), so he discharged me.  I don't know if I should ask the GP to refer me back again now!  I really do feel stupid over that!

Another good point Robin. 

This is where I'm struggling Alison LOL!  The facts are that none of the treatments are without risks - risk of serious side effects OR risk of not working very well, so to some extent I feel it's down to 'you pays your money and you takes your chance'.  I am veering from side to side towards one thing or another, but the dizziness and burping up acid I think rules out the AA.  The dizziness has almost gone now 12 days after last tablet.  That's something.

Yep - I agree with this too Allison!  Sorry to keep going back to it, but after being pushed so much re the estrogen (which didn't do what it was supposed to do anyway!) and the doctor, despite me showing her the instructions from the company who made it, where it said the recommended dose should NOT be increased and there was a risk of endometrial cancer on the recommended dose if there was a uterus, still denied any wrongdoing saying it was perfectly safe, it makes me feel that they are trained to 'throw the designated tablet at it' without much thought at all.  Almost like a computer and a production line!  I will be surprised if my chat with the GP today results in anything more than 'well take it or don't take it' but we'll see.  But at the very least I am going to ask for Vit D levels and calcium levels to be taken and monitored!  I think this should have been done before I was put on AA.

Juno - makes sense LOL!  I suspect there are a lot of people who just take a GP's word for everything and never look anything up.  Although this might be dangerous to some extent, ignorance is probably bliss for most LOL!

Oh Juno - how wonderful it must be to trust a doctor!  After the endometrial cancer I came out in swellings on the side of my face, saw a pharmacist who told me to see a GP urgently as I needed antivirals, so got an appointment for that night, was scathingly told the pharmacist wasn't a doctor and it was just a bite, to go back two days later where eye was all swollen and chronic earache and loads more swellings down that side of face, and yes, it was shingles, and was told by the practice nurse I should have had antivirals two days before and now there was risk to the eye because of the shingles.  Being told by two GP's that my back problem was arthritis, without them even looking at it, and then finding through the genetics team at a hospital that it was scoliosis, kyphosis, lordosis, osteoporosis and arthritis, and damage was being done by the exercises the physio (who had been told it was arthritis) was giving me - faith in a GP - never again!  I've worked my way through so many and every time I've thought 'this one is good' I've been let down yet again.

Allison, you're right too!  I feel there is no choice but to take responsibility for any decision I make, based on as much information as I can find on the net.  Not ideal, but that's about it!

I have vertigo so can relate to your dizziness.

I want to remind everyone that there are 2 Alisons in this discussion. I am on AA because I also have a brain tumour on the balance nerve and I cant afford to fracture another vertebrae. I am dizzy all the time but havent noticed it any worse since starting the AA 5 weeks ago. One mans meat is another mans poison and I think it is wrong, very wrong to try and influence anyones decision re their bodies. I thought long and hard but if I have made the correct decision or not, only time will tell.

Kathleen, does your vertigo come from using AA?

Hi Alison and others; I am the other Allison. I want to make it clear that I am absolutely not trying to influence anyone elses' decisions re: taking osteoporosis drugs. I am simply stating the facts as I understand them and giving my personal opinions pertaining to what has influenced my own decision. It's been a difficult and troubling decision for me to abstain from the drugs. I certainly understand and respect your and others' choice to take them. Clearly, most people who do take them will not have major catastrophic side-effects. The question that each person has to answer individually is whether the possibility of being in the minority who do have adverse effects, given what they may consit of, is acceptable, given the potential benefits. Alison: I wish you all the best with your medical situation.

Hi Chris, what dreaful experiences you've had! I had to read your comment twice just to let it sink in.  NO ONE can defend such apalling treatment and the doctors conceerned deserve that you take legal action against them.  But there ARE really good doctors also and I hope you've found one of them for your care by now. Take care, J x

Oh thank  you Juno, but I had to laugh at your comment about finding a good doctor by now.  Still waiting for the doctor to phone - been waiting all day - will he, won't he.  But not expecting a lot.  My husband had carpal tunnel for years and he just kept offering ointment until my husband insisted on being referred only to be told he'd left it too long and would never get full feeling back in his hand so the best he could hope for was no tingling - that was the doctor I'm waiting to phone.  I know someone else lost their eyesight permanently thanks to this bunch.  But if I can get some information from the scan it will be something.  I've had my list of questions prepared and ready for when he phones:-))))  But thank you so much for your comments, and I'm sure you'll understand why I'm hesitant to trust a doctor any more than I'd trust a second hand car salesman:-)

Hi Chris, NEVER let yourself feel stupid when dealing with your doctor. He is providing a service to you and is being paid well for this - by you or by the state. Ask for a referral back to him (if you have confidence in him) and just tell him what you just said at the end of your post to me. Some of them are fairly human - you know the joke which goes as follows: 

What is the difference between God and a consultant?

Answer - God doesn't think he's a consultant. . . . . !!

Finally, there is some research that backs up something that Alison (?) mentioned - the most difficult and demanding patients get the best treatment. The doc, knows his decisions are being checked, and because the patient is obnoxious and demanding their approach is " let's sort out this gobsh*te and get her out of my hair".  Ha Ha,  Good luck, J

Allison, I think all of us appreciate that the stand you take is your valid and personal one and is being communicated purely  out of concern for others and I, for one, am grateful for this. Indeed your reply to Alison got me thinking more broadly about this. I have spent two years now reading up various research papers about these and other OP meds. and their side-effects.I've found myself variously feeling depressed, vindicated, confused and sometimes excited about possibilities. . . My recent conclusion, was two-fold - 1). Just stop reading research papers. 2) For any information I need, then, to go to world-class medical sites ( Mayo Clinic) and if I can't have confidence in them when who . . . ?

Finally, can I  briefly outline just what the Mayo Clinic says about Bisphosphonates (BS) : "  . . 3 to 5 years of treatment with BS is safe and effective. The scientific literature is full of good studies of all the BS medicatios that prove their safety at preventing fractures of the hip and spine for 3-5 years. Beyond 5 years, there's less certainty because of a lack of long- term studies. However, even if you stop taking the meds., it's positive effects can persist. This is because after taking a BS for a period of time, the med. remains in your bone . . Osteonecrosis (ONJ) develops when the jaw bone fails to heal after a minor injury eg. tooth extraction. The best estimate of risk for ONJ is 0.1% .(This means that 1 out of 1,000 women taking BS for a year).The risk of BS -related leg fracture is lower still."  . . .

So, good luck to you all - no matter WHAT your choice is. 

And thank-you Allison. Very kind thoughts, J

 

I am sure there is the odd good second hand car salesman too. It was years before I found a good Doctor. One who listened. Constant earache turned out to be a brain tumour and a sore back turned out to be 2fractures and osteoperosis. But, now I know, I can deal with it and I am grateful to her for believing me. Got a smear test last week. Dont want to know...ha ha. Change your Doc. It is better than feeling you are going crazy. Good luck and let us know the outcome.

The Mayo clinic is the one I trust too. Having a medical background, I think I have an open mind, but it can be difficuilt if we read everything, especially when we dont know what evidence they have to back up their claims. All our circumstances are different as are our expectations, but I have agreed with everything you have commented on and found your input very helpful. Thanks

Alison where I live there is one practice with several GP's.  I've worked my way through most of them now!  Not much choice left:-(  I do hope your brain tumour can be treated successfully.  I must say the TENS machine helped SO much with the pain on my back!  I rarely use it now - it stopped the spasms after a few days' use.

Thanks Chris. I will give it a try. Hope you get some results soon

Re. your last sentence, likewise for me. Keep in touch. J

Thanks, Juno, for your recognition of my intentions. Re: Mayo Clinic, while I agree that they are an authoritative source in general, they have a pronounced tendency to go with the mainstream. They are not going to challenge the prevailing consensus. Only large, new, peer-reviewed, retrospective studies will move them from their stances. That Mayo is saying three to five years on bisphosphonates is safe doesn't make it so; they are saying this, I believe, because the Food and Drug Administration recently issued strong warnings about the lack of safety of "long-term use" -- but NO ONE YET KNOWS WHAT 'LONG-TERM' ACTUALLY IS in this case. Furthermore, anecdotal reports of serious-to-catastrophic adverse effects after even a single dose of a bisphosphonate are mounting. Finally, the 0.1 percent "best estimate of risk" that you cite will, from all that I've read, turn out to represent major underreporting. I've read much higher estimates of ONJ in several sources.

Just submitted a reply that is "waiting to be moderated," but I've no idea why, as it didn't contain a single link, only the mention of other sources. Does anyone know if the site moderator can actually be reached? Or is the moderation process opaque and robotic? It appears that whenever a "waiting to be moderated" appears the comment never makes it onto the site.

 

STILL waiting for the doctor to phone.  This phone call was booked over a week ago, and we've been waiting in all day for it.  Before now he's not phoned on the day he was booked to phone.  If I don't get a phone call tonight I think I'll phone them tomorrow, tell them I want to collect my results (they wouldn't allow the receptionist to give me them over the phone) and see if I can get them like that.

Funny that. A couple of hours ago I sent a reply to Chris and it was also jumped upon by the moderator . . . Don't know how to contact him but they usually release or modify a post within a day if there is a perceived potential problem, whatever that is .. . Did you swear???   Just joking . . J

No, it started on a road trip after going down a very windy road. It gets stirred up with surgery on my face. I am using a wheeled walker to prevent falls and give me confidence. I have not started fosamax yet.

Juno, you got me wondering with your post.  Did you get any chance to discuss any medication with your doctor?  When I went yesterday I was told to go and wait in the waiting room while she (head nurse practitioner) discussed it with the doctor and an assistant came out with the biphosphenate prescription - fait accompli - no discussion and no chance for a discussion.  Of course, when I looked it up and saw it was biphosphonates again, I threw it in the bin.  We are having big issues in the UK about the amount of medication that people get but don't take.  I wonder why that is!

Allison this is exactly what I was saying to my husband this morning about 'do no harm'.  The harm that I've had from meds has been appalling, with NO benefits so far to see!  I feel as though our GP's treat us as though we're on a production line and they are a computer, programmed to click on a certain medication for a certain problem with no thought of any harm it might do - as though that's not their problem.  So my choice of treatment is the D3, calcium citrate and making sure I'm getting the recommended dose of K2.  I can never trust a GP to prescribe something that isn't going to cause more damage than benefit, unfortunately.

Only just got this one through Juno.  Every time I see my GP's I have less and less confidence in them.  When I went last time, after the phone appointment that I'd waited in all day for never happened, I got the head practice nurse and she was so abrupt and then told me to go out of the room while she spoke to another doctor to see what they suggested, and while I was out there another nurse came up and thrust a prescription into my hand.  No chance to discuss anything at all.   It's just a total waste of time going.   I'm SO sick of the lot of them!  I have got  half a letter prepared to the practice manager but as my husband said, if I send it, they'll just tell me to go elsewhere!  It's polite but tells them about all the mistakes they've made.  It won't be accepted well!

Hi Allison,  All you say above may be correct. However, if you have significant spinal OP and are at serious risk of vertebral fractures, which may leave you with kyphosis and a lot of pain, the decision is made. The logician in me says that even if the risk of ONJ/femur fracture is five times more than what was thought, it's still less than a daily risk of fracture when doing something simple like stepping awarkardly off a step. If medication (BS) can ameliorate this, I'll take it, at least temporarily. By the way, while no one could ever want ONJ, it won't kill you. Smashing a hip has a 25% mortality risk.  . . . . . Kind thoughts, J

Juno, ONJ is considered a catastrophic side effect. Not only can it be disfiguring to the face; it can prevent necessary dental work from being done. Oral infections can become systemic, at which point they pose risk of death. The atypical femoral fractures that are increasingly being linked to bisphosphonates are sustained "when doing something simple," as you state above in relation to osteoporosis. Bisphosphonates are also linked to atrial fibrillation, eye damage, and (unless they're given by infusion) major esophageal irritation. None of these effects are minor; furthermore, they are likely to be irreversible, given the ten-year half life of bisphosphonates. No one, least of all me, is discounting the seriousness of osteoporosis. But this doesn't equate with having a reasonably safe (note I say "reasonably," not "totally"), convincingly effective solution for that troubling diagnosis. The number needed to treat in order to (hypothetically) prevent even one osteoporotic fracture is quite high. Going just on a common-sense basis: if an older person falls, fracture is likely, medication or no medication. And will carry the same mortality risk you cite, medication or no medication.

Chris, just saw your post. Yes I did discuss meds. with the Rheumatologist And asked for a referral from my GP to see one. She suggested a one year course of Forteo which I initially refused (after researching), and eventually took. Now on Actonel. Have a scan shortly to check if any improvement. I'm in R.O.I. Could you ask to be referred to a rheumatologist for a once-off apt.(if necessary go private)?. He/she sets aside half an hour for each apt. and you can talk out your various options. Take care, J

Oh Lord Chris, I've just seen your post of 5 days ago and now I've duplicated my reply . . . Senior moment, please forgive me. I've been off-line for a few days (visitors). . . .  Keep in touch. J  x

What's the 'reasonably safe effective solution' ???   Have I missed something ?    J

Am I wrong in thinking biphosphonates can cause cancer of the esophagus too?  My neighbour died from that, but I don't know what the cause was.  But another factor to take into account, is that biphosphanates don't rule out a fracture but make it less likely.  I find it all so hard to know the best to do in the long run, but feel I'm lucky to have had the warning signs that I've had so I can hopefully take preventative action against it getting worse now.  Am I right in thinking the Vit D3, calcium and K2 and magnesium citrate will possibly stop it getting worse? From what I read it looks as though there is a higher risk of osteoporosis if you're on levothyroxene?  Do people think if there was more publicity about osteoporosis so people could start taking Vit D3, calcium, K2 and magnesium citrate at menopause it would prevent mose cases developing?  Or is that wishful thinking?

No worries - it may have been me replying to one of yours Juno, that I found had gone through to my junk box, so you can blame me:-))))

Yes, that would be an option Juno but because unlike what I was told originally when they said I had osteoporosis in the spine (with crushed discs), the spine is clear and it's only borderline in one femur (well, just under borderline), so I'm hoping the Vit D3, K2, magnesium citrate and calcium citrate will stop it getting worse and maybe even take that borderline femur well out of that category.

There is none, as of yet. Much as we might wish otherwise.

Chris, a possible link to bisphosphonates and esophageal cancer has been hypothesized, but so far there's not definitive evidence for it one way or the other. However, the oral bisphosphonates can cause esophageal irritation; that is one of their common, undisputed side effects.

I'm off to bed, duvet over my head . . . .  J

Thanks Allison.  Something else I've been wondering about - with the risk of fractures of the femur with biphosphonates, why do they give these when there is already osteoporosis of the femur - that's not quite adding up to me?

I know the feeling Juno.  Sometimes I just feel as though I've lost the plot, because thre is so much information to take in and I wonder if I've got bits confused!:-)

Yes, this would be an option that I'd think about if it gets worse, Juno, but at the moment I'm placing my bet on calcium, D3, K2 ane magnesium citrate because it's boderline osteoprorosis, so hoping I can avoid meds like that.

I am getting the two Allisons mixed as well. 

I have been reading where there have been hundreds of court cases in America brought against Fosamax.

Some people seem to be saying they have had jaw issues without having teeth out.

There were cases brought where people sustained fractures to the femur and had rods inserted.

I have this gut feeling that the risks are too high.

I have never felt like this before about medications.

I am going to the path of natural and if you have any pearls of wisdom for me that would be apredicted

I was just reading posts from a year ago Kathleen and there were posts about enamel cracking, and all sorts of dental problems.  I was very keen on the studies that had been done with high doses of Vit K MK4 in Japan, and North America and other places, but the doses are incredibly high, and since K2 seems to be a clotting agent there is concern that it's dangerous, so I'm now going to stick to just one tablet of Mk4 100 mcg a day rather than the 45mg that were used in the studies.  Fish eggs are high in it from what I understand so tinned roe sounds like a good idea.