Alendronic acid

[Delphy]

I have been taking alendronic acid for over 5 years. When I spoke with my doctor about having a break from it, he seemed to think I could go to 7 years. Is this correct?

[Met00]

The official advice in the UK is that it should be reviewed at 5 years, but there needs to be a strong reason to continue as a drugs holiday is recommended if possible. This decision aid points out that there's no evidence of benefit beyond 3 years: nice.org.uk/guidance/ta464/...

[Delphy in reply to Met00]

Thankyou, I will contact my doctor.

[Fruitandnutcase in reply to Delphy]

Yes, when it was prescribed for me I was to take it for five years.Have two friends who are having infusions and both of them are stopping after three years. So when you add it to what Met00 says I think you do need to speak to your doctor.

[Delphy in reply to Fruitandnutcase]

Thankyou.

[Hidden in reply to Delphy]

First Bone Density test showed Osteopenia, I should have been told to take vitamins. I was peri-menopausal but back in 90's women were given Fosamax and told we'd be on it for life. I had side effects - Gerd and still do, plus after dental surgery I developed extreme Jaw pain.

Told to stop taking oral Fosamax in early 2000s. No new Bone Density test ordered.

Fosamax is a is Bisphosphonate. Now there have been numerous reports of unusual fractures in the thigh bones of otherwise healthy women that took an inordinately long time to heal.

Bisphosphonates also can cause severe heartburn and ulcers and damage the stomach and esophagus if not taken in a very careful regimen (on an empty stomach, with a full glass of water, while sitting upright for up to thirty minutes). I had no idea

Other women experienced severe bone, joint, and/or muscle pain.

The FDA advises patients with pain to consider discontinuing the drug, which usually causes the pain to go away. It never went away for me up to today.

The jaw tissue of some women taking bisphosphonates dies (jaw necrosis), which can necessitate removal of an area of the jaw bone.

For many years, the risks of bisphosphonates were unknown, and many healthy women who took these drugs experienced unnecessary side effects.

We now have a much better understanding of the risk that bisphosphonates pose, and have a few strategies to mitigate them.

We also understand which women will benefit most from treatment. For women who have already had a serious fracture and are looking to prevent a second or third fracture, the benefits of bisphosphonates may well outweigh the risks. For women with OSTEOPENIA who have never fractured, the NWHN seriously questions the benefit of bisphosphonate treatment at all.

In early 2000's I moved and changed doctors. Original doctor kept saying I was taking too much calcium supplement. I wasn't taking calcium, I had way too much calcium in my bones. After changing doctors it turned out I had PARAthyroid desease for a long time. Large adenoma in my PARAthyroid glands was leaching calcium from my bones. The adenoma was removed. No new Bone Density test ordered after surgery

Years passed and I was sent for Bone Density test on a Bone Bus. This time I showed advanced Osteoporosis and doctor on the Bus said I needed Prolia but didn't give me a calcium test after shot as directed, and no warnings of side effects of Prolia,

Then doctor retired and Prolia injections taken over by a PA who also never ordered a post injection blood test and didn't say anything about side effects of Prolia or how long I should be on it.

Insurance soon wouldn't cover the huge cost of Prolia - suddenly my co-pay

So they referred me to an Endocrinology office that charged me less. But again no doctor, only PAs and both sites are big supporters of Prolia and claim they know nothing about the necessity of developing a going off the drug and onto an alternative Osteoporosis drug after only 2 years.

Prolia is intended for women with severe osteoporosis who are at high risk of fracture. For those women, a common first-line treatment plan will include two years of denosumab (Prolia). followed by three to five years of bisphosphonate use.

This is because the fracture-preventing, bone-density-building benefits that densoumab (Prolia) confers are not permanent, They are quickly lost if not followed by several years of bisphosphonates. So what do I do?

The Profits of Prolia are enormous - Cost patients thousand of dollars a year and you can find an alterative practice that doesn't recommend Prolia.

Both heathcare providers I've dealt with are still selling me to stay on Prolia for more than ten years and very likely another 5 years after that . Both haven't told me of the warnings of taking Prolia because they recommend it so much.

Is it dangerous to stop taking Prolia

nwhn.org/is-it-dangerous-to...

nwhn.org/treatment-osteopor...

I looked up "profitability of prescribing Prolia Osteoporosis medication for doctors"

I can't find an answer

[SpaghettiIsGood in reply to Hidden]

When you say, "The jaw tissue of some women taking bisphosphonates dies (jaw necrosis)...", Would you say it dies after having oral surgery done, and not by itself, as a side effect?

Good point you brought up about the bisphosphonate after prolia. That's a question worth asking upon getting a new prescription:. Will there need to be a follow up drug after this one?

When you mentioned the huge cost of these drugs, sometimes these drug companies have coupons on the web that reduced the cost by more than half (tymlos does, in the u.s.)

I've looked into the profitability of prescribing meds and doctors just get lunches and gifts, not money, but apparently that's enough to keep them prescribing.

[SpaghettiIsGood in reply to Hidden]

I know this may not be the b e s t idea, but many of these drugs seem experimental, and some are certainly new. I feel that I shouldn't take a drug long term, and if I do, I will take a drug holiday. Hopefully, I'd get the benefit of the drug, without it building up some kind of side effect that will be discovered later, or is known now.

[scd2211 in reply to Met00]

Thank you so much for posting this link. It will be very useful in asking my rheumatologist if he still advises me to continue with alendronic acid after 5 years.

[painting12]

I was on Alendronic acid for 5 years. Gp prescribed a,Dexa scan to see if it had helped. There was an insignificant change in my readings compared to pre Alendronic scan. My gp advised me to stop it and did not recommend anything else but to carry on with Adcal , and the exercise regime that I was following. I have had another dexa scan 4 years after stopping Alendronic. Awaiting results.

[Delphy in reply to painting12]

Thankyou. Hope the results show some improvement.

[painting12 in reply to Delphy]

Thank you

[FearFracture in reply to painting12]

I hope your numbers are up and either way, I hope you will consider sharing your results so we can all learn how these med work.

[painting12 in reply to FearFracture]

Will do thank you

[painting12 in reply to FearFracture]

Thank you. I will share the results.

[Dorsetlass2300]

Hi I was on AA for 5 years up until October 2021. I wrote to my GP requesting a drugs holiday and he was happy to refer me for a Dexa scan. That showed some improvement and put me in the osteopenia range. I am dutifully keeping up my good diet and exercise with another Dexa scan in 2-3 years time. I think another conversation with your doctor would be a good idea. Best wishes.

[Delphy in reply to Dorsetlass2300]

Thankyou. I will get in touch with my doctor online.

[scd2211]

Thank you for posting this as I have the same issue. This January I have been taking oral alendronic acid for 5 years and I have the same worries. My rheumatologist advised me to continue taking it for another 16 months until my next DEXA scan in April 2023 “as it appears to be making an impact and improving my bone density”. But I am concerned!

[Fruitandnutcase in reply to scd2211]

You do have to wonder how, if you haven’t had a recent DEXA scan and aren’t due another one until 2023 he knows how it “appears to be making an impact and improving your bone density”. 🤔

[scd2211 in reply to Fruitandnutcase]

Sorry, I should have said that he recommended me continuing until 2023 after my last Dexa in April last year. I was sure he’d say, in response to improved bone density back then, to either stop taking aa then or just to continue up until 5 years, not for a full 61/2 years. There really seems to be no exact science with this and different medics advise different courses of action!

[FearFracture in reply to scd2211]

I generally walk every day. A few weeks ago, while walking, I ran into a lady who is approximately 75 and about my size. I'm 53 and 4'11" --no height loss, just short Turns out she too has osteoporosis and she said that she took Alendronate for 20ish years. Her doctor prescribed it when she was in her mid 50s and she just recently stopped taking it. I was surprised by this because I've always heard that after 5 years you need a break. Additionally, she said she'd never had any issues with taking it.

[Hidden in reply to FearFracture]

Every doctor I've talked to supports taking Prolia not for two years or 5 years but 10 to 15 years with no transition to another Osteoperosis drug. They are carrying on the false info of the 90s that ended up people with serious side effects.

POLIA is useless. It builds pseudo bone mass but within 10 mos of going off Prolia, (now less than 10 mos) that bone starts to dissolve and people begin experiencing serious breaks.

Current advice is to transition to a Bisphosphonates drug like Fosamax and other drugs in that category, for five years to retain current bone mass but if you investigate Fosamax, as one example, it has side effects that cause Jaw pain or Jaw Necrosis after dental work and also Gerd and breakage.

So while you can't possibly be on Prolia for 15 years as every doctor I've talked to swears by - the transition to a Bisphosphonates is not really a safe solution.

There is not a safe solution for Prolia. Changes of side effects get higher with every injection and the solution doesn't really exist.

The only answer is to get it off the market - pulled by the FDA. Nonprofit groups have petition for a Black Box Warning so patients can get to see the side effes and make an informed decision...but what good is a Black Box Warning if you are never see the box - A PA comes in with a syringe, no box, and they are being mislead by American pharma and the FDA. You can't get a proper warning.

Canadian physicians have been informed by the Canadian gov. version of FDA and warned of side effects and breakage but FDA is still supporting Prolia. I don't know the Canadian website link and it doesn't show up on my searches.

American health care sources claim research is supporting extending Prolia - I believe they get research from Pharma rather than independent research that has been available to Canadian doctors.

Polia builds bone density but it's temporary - it just hands you another problem even greater that Osteoperosis since you can at least treat osteo nutritionally or with hormones. The older you get the faster time seems to fly by. Having bone density improve for a max of 5 years and telling people they can extend to fifteen years is counting on seniors dying Doctors don't get the accurate studies - not in the US anyway and I suspect some will be ending up with "presents" from big pharma at my expense.

[Hidden in reply to Hidden]

Does anyone have the url's to Canadian research sites and Canadian gov information provided to physicans.

[SpaghettiIsGood in reply to Hidden]

Yes, I heard this too, that new bone is laid on old bone with these drugs, and, as the saying goes, one can't put a new cloth patch on an old clothing, lest they both get torn in two.

I found the following when searching for Canada's prolia warning.

aboutlawsuits.com/prolia-fe....

canada.ca/en/health-canada/...

[LynneH-19]

I was only on AA a few months so cannot speak from personal experience.

My impression from reading comments on both the NOS and the American society over the last 5 plus years, is that 5 yrs was the maximum at one time and that this was then replaced by a 3 yr maximum.

Have you had a repeat DEXA scan?

[Delphy in reply to LynneH-19]

I had a dexa scan over 5years ago when I was shocked to discover I had lost 4 inches in height. No mention has been made of having another scan.

[LynneH-19 in reply to Delphy]

I believe the NHS allowed a repeat scan every 5 yrs. This was of course before lockdown. It may be worth you asking for a repeat.

I’ve been on Strontium Ranelate since 2011. No more broken bones, or problems from it, except that I’m not allowed repeat DEXA scans, because it’s more dense than Ca, so can confuse the scan results.

Hope you manage to get it sorted to your satisfaction.

Best wishes

[HeronNS]

As a couple of others have said, I believe more recent guidance re bisphosphonates is that two or at the most three years is the best length of time. Beyond that, new bone is being laid over an increasingly aging matrix, and this is what can lead to the so-called atypical fractures. Bisphosphonates work by preventing the removal of old bone, remodelling, by inhibiting the action of osteoclasts while allowing new bone to be formed by osteoblasts.

Moreover bisphosphonates remain in the bones basically forever as far as we know, so discontinuing them will not have an adverse effect, as discontinuing the other types of bone drugs does.

Unlike many medications you do not need to taper, and you would not, as in the case of a drug like denosumab (Prolia), run the risk of rebound osteoporosis if you stopped taking a bisphosphonate.

[Delphy in reply to HeronNS]

Thankyou.

[Heather9]

I started taking AA in Ocotober 2017 and last October asked if my DEXA scan could be brought forward to asap. My GP was happy with this and immediately logged a request for an appointment - 4 months later nothing. As ususal these days the reason given is the backlog due to Covid.

[SpaghettiIsGood in reply to Heather9]

Why not call to follow up?

[Heather9 in reply to SpaghettiIsGood]

I have done but the response is still the same!