Dreaded AA again !: I do not understand... - Bone Health and O...

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Dreaded AA again !

I do not understand why Alendronic acid is still being prescribed. Having been diagnosed with osteoporosis, I took it for about 6 years which is now known to be far too long. As a result I sustained fractures in both femurs, a year apart, both now pinned but definitely stated as caused by AA. I am now coming to the end of a 2 year stint self injecting daily of Teriparatide. I am told it is too expensive to be prescribed on the NHS ( I get it on the NHS !) but think I was given it to make up for my being on AA with the results mentioned. Am I too cynical ? I don't think so.

I also have crumbling vertebrae which are painful so Hey Ho Old age ain't for sissies !!

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Gillymar

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10 Replies

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HeronNS6 years ago

This is shocking. I think stories like yours need to be far better known. I'm constantly amazed at how oblivious my doctor is to things going on in the world. I don't think we can trust our doctors to pay attention to facts like this, they are so busy. But the more the general public is warned by hearing stories like yours the better, because patients in turn will educate the medical profession.

Speaking of doctors, how does your doctor plan to follow up your treatment from now on? Have you received any advice about nutrition, for example, or help with learning how to protect your vulnerable spine?

Thank you for sharing your story.

Gillymar• in reply toHeronNS6 years ago

I have some physio therapy (private) but apart from regular medication for bones and other conditions no special treatment. The spine problem is left to painkiller when needed. There is an operation to cement the vertebrae but at my age 85, neither my Dr or I want that. Thanks for your interest

LynneH-196 years ago

I agree with Heron’s comments.

I think GP’s blindly follow the NICE guidelines, instead of using their common sense.

I hope you soon find an agreeable alternative.

Very best wishes

greyh6 years ago

Cynical, certainly not -damaged by the lack of sound advice from your doctor - what an appalling and shocking tale, so sorry for your pain.

lolly646 years ago

Hi Gillymar I have been on AA for a year now but although I had a few side effects at first bone pain etc I'm now fine, but I have to say I have heard of these fractures and I'm really worried about it but I also have a fear of breaking something but I honestly don't know whether to carry on with it it seems like it's the silent side effects that we need to worry about and the GP and the OP nurses just reiterate the benefits of taking it but really are there any!!! 🙄 Good luck with problems and thanks for the information take care

netball7• in reply tololly646 years ago

Hi I recently started AA but research completed thus far I have stopped. If we patients continue to take drugs without question or support backed up by reliable clinical research were just open to more complications. As an RA sufferer I have now got osteoporosis because of my RA medication so what will I get next? I have had plenty of exercise and followed an OK diet but I have also gone through the menapause and older than statical norms used for T scores. It's a natural aging process and many of my friends have never had a dexter scan as there not ill along with my mother of 78? However some people do have major issues and medication is a must but we're all being put into similar categories but we're unique...one cap doesn't fit all. I may regret my decision but fingers crossed I don't.

Savbing6 years ago

My side effects are minor. I do all the lifestyle interventions. I also take AA. I know it is subjective, but since starting it I can feel that my wrist bones have become more dense.

The Drs are generally too busy to offer advice, it is the role of other Health Professionals to do so. We also have access to all this information on the net. Be warned though. Some people give their anecdotal opinion. We need to be able to access unbiased research. Then we make our choices, which should be respected. Do we always make the best decisions?

Charlie506 years ago

My side effects were really server ended up in hospital for 5 days on drips as I was unable to eat & keep food down. Even now I am not back to how I was pre Infusion & I now have IBS on top of my Total Gut Dismortility which is awful. Rheumatology have gone quiet no one has made any contact with me, GP has no idea what to do except to wait until next year then decide.. Decide what? I'm not having it again... I do hope it helps people but I wish my consultant had looked a bit more into my health before saying it would be fine. I had asked all the questions but was told that it is a safe & very effective way. We live & learn I just hope that someone will be able to help me to protect my bones I am 55yrs old & totally scared... even my Physio who has been wonderful said Don't go outside in ice, take care in windy conditions & go with another person if going on uneven terrain. SO I hope research will continue but I also wish Consultants would speak to people when things don't turn out in a positive way.

Catgran6 years ago

Hi, I am 74 and have osteoporosis in spine with loss of height etc, I was on AA for years and luckily no (known) side effects, and it actually improved my density mark. I am now on a medibreak and so far no more fractures. Reading all the comments I would now be reluctant to start again if it was needed. Rather worrying!

Middleton6 years ago

I was on alendronic acid for five years came off it a year later had tooth extraction plus root canal three times my dentist warn me because I had been on it for so long I could get osteonecrosis of the jaw I knew nothing about this side effect perhaps should have done research on it but trusted my doctor with my health The result is after the dental treatment I now suffer with jaw pain thankfully I can control it with pain killers