Taking Aledronic Acid fortnightly.

[Golf123]

After 4 years and 3 months on Aledronic 70 mg, I am thinking of changing to taking this fortnightly, rather than weekly. I've endured taking it, but have never really been completely comfortable. I was diagnosed with osteopenia of the right hip, and - 4 spine. However, my height measurement was totally wrong ( Dexa), stating I was 5 ft 4 inches. Infact I am 5 ft 8 inches. This makes me suspicious about the accuracy of this Dexa reading. I have a herniated disc, Lumbar L5. Has anyone decided to take their tablet fortnightly,?

[CinnamonRose]

I'm just wondering, have you actually measured yourself recently? I was 5ft 4 I'm now 5ft2, it's one of the symptoms of Osteoporosis many others have reported bigger height losses. Unfortunately AA didn't do anything for me, I took it every week as instructed and had further fractures

I've now had Zolendronic Acid infusion.

Could you talk to your Dr about reducing it, your scores are higher than mine and yet I've had 7 vertebrae fractures.

Take care xx

[Golf123 in reply to CinnamonRose]

Thanks for your reply. Yes

[Golf123 in reply to Golf123]

Whoops ...yes, I have recently been measured and my height has definitely not reduced. It is all very confusing with these spinal fractures, as I've not experienced any that I'm aware of. I should be on AA for 5 years before my review, the end of this year. I will have to give it some serious thought whether to continue. x

[Fruitandnutcase in reply to CinnamonRose]

Well, I’m 1.57m and when I looked at my last rheumatologist’s report I am shown on there as 1.59m. That comes about because they measure my height with my shoes on - even though I offered to take them off.

I assume they do that for speed as a lot of rheumatology patients seemed to be older and many look quite infirm. It may be easier for the staff but it is very inaccurate and I would have thought it was important to measure osteoporotic patients accurately.

My plan is to buy shoes with thicker and thicker soles and be a medical miracle who actually gains height in spite of having OP.

[CinnamonRose in reply to Fruitandnutcase]

Thanks for the 😂 I needed that tonight!!That'll baffle them all, no point spending the time measuring you whatsoever 🤷🏽🙃

[CinnamonRose in reply to CinnamonRose]

I usually wear fitflops as most other shoes hurt my feet so they're easy to slip off.

[Blondeisbest in reply to Fruitandnutcase]

Lol....really did make me laugh out loud x

[Ketchican in reply to Fruitandnutcase]

On a gloomy morning with fractures letting rip, you made me laugh with your idea of thicker soles on our shoes - thank you!!

[DianeG52 in reply to Fruitandnutcase]

I have the same experiences too when being measured before appointments.

Each time they’ve said it doesn’t matter so my height varies over the years depending on what I’m wearing and how the nurse feels at the time.

[CinnamonRose]

Hopefully maybe someone else will chip in and help, you'd know if you had fractures!! The pain is ghastly, some very lucky people say they've had fractures and didn't know but I reckon they must be the minority and I hope they realise how fortunate they are! xx

[MnMTwo]

I’d speak to whoever prescribed the AA p, to see if taking it fortnightly would still be effective.

[Rooruby]

Hi I too took AA for 5 years on and off hated it. Then Sept 23 had spinal fracture my op was always severe tbh it did nothing for me. Now I'm on daily injections of teriparatide. Was doing ok but last 5 weeks been suffering excruciating pain in my back and groin. Not sure if teriparatide will help will have to see. I would speak to your consultant there is a yearly injection which may be better and as for fortnightly not sure if it will be beneficial. Best speak to nurses at ROS they are the best.

[Blackcat99 in reply to Rooruby]

Similar story - I was on AA, in a couple of variants, for over 30 years, then started getting a number of breaks. Now 2 months into daily teriparatide injections - a bit of a faff when travelling, but have heard great results from one friend and two friends-of- friends , so here’s hoping 🤞 Good luck! X

[corcho in reply to Blackcat99]

30 years is a long time to take Alendronic Acid! Glad that you now have Teriparatide as this actually promotes new bone. All the best going forward...

[Rowan7]

Good morning Golf 123,There is a Huge discord on your Dexa scan results. Has a medical professional explained this ?

When I had a position issue on being Dexa scanned (twice) I obtained a private REMS scan from Mr Nick Birch at Osteoscan (it's a different technology) because I wanted to know the strength of my bones which a Dexa can't tell you.

His clinics are all over the country and hopefully you can afford it and can get there. It was the best money I ever spent, a true investment in my future overall health. I cannot offer any experience of medication as I declined. Best wishes.

[Smittybear7 in reply to Rowan7]

Where is Nick Does he ever come to Pittsburgh Pennsylvania?

[Rowan7 in reply to Smittybear7]

Nick Birch, Osteoscan is UK based. Perhaps you can research REMS scanning in US ?

[PoppyPaddler]

The Dexa result sounds hugely suspect with a large difference in height which is a factor. Like Rowan7, I had a REMS with Mr Nick Birch and a different picture emerged. If you are able, I would recommend the REMS.

[dcdream]

my mom, age 92, took Fosamax off and on for a decade. When she stopped doing so at age 85, she began to fracture. At age 89 her spine collapsed and she lost 5 inches of height. She gets Recast Infusions every 2 years so far. That said, she has fractured many times, including both thumbs, shoulder, spine, elbows, etc. She falls all the time as well, which makes life difficult. It is very discouraging to see that someone who followed all protocol for osteoporosis and all the meds, has had very little luck with her bones. I am 71, have worst Dexi Scan scores than my mom and never fractured or fallen. I do not take meds. still waiting for meds that actually work better for long term use. I am very discouraged by the current slew of meds that produce brittle bones that fracture and break easily.

[Fruitandnutcase in reply to dcdream]

Your poor mom, that is just awful isn’t it especially when she has done all the correct things, it must be so depressing and painful for her.

She isn’t by any chance taking medicines that could contribute to her frequent falls, you read a lot about that sort of thing nowadays. If that is the case could her doctors review any medicines she is taking?

pmc.ncbi.nlm.nih.gov/articl...

bmjopen.bmj.com/content/7/1...

Hopefully it will be a long time before you fracture - if ever.

[dcdream in reply to Fruitandnutcase]

She began to fall more due to her osteoporosis as she has a hump and that threw off her body mechanics, posture and stability. Many meds cause problems with bones and also increase possibilities of falling. We were very aware of all that and her doctor is excellent to watch that with her meds. Honestly though, most meds all create secondary conditions and side effects. My mom was very active, always gardening and was an artist. She was always proud to be so strong in her life. Once she was on osteoporosis meds, things did change for her, as she developed acid reflux which created another med she had to take. Then more stomach issues and digestive issues while on the meds. Then polyps in throat as well. Not to mention the brittle bones the meds create that lack the ability to be flexible like our regular bones. It hasn't been a great journey for her. She is now using a walker but her fractures, hump have greatly impacted her life and now the collapsed spine is creating digestive and organ issues that impact her heart as well, which is taxed by all of this pressure on her organs.

I am waiting for better osteoporosis meds and feel like that miracle may not be in my reach but hopefully for future generations they will discover how to create new bones without all these side effects and without making brittle bones that fracture.

I am also seeing my friends who don't have osteoporosis but are my age, 71, who have lost more height than I have. I've lost just 3/4 of an inch but friends have lost 1 -2 inches in height without osteoporosis, so there are many other aspects to bone, spine and hip strength. Unfortunately companies don't want to spend millions in research to come up with better drugs for us women but I expect that with more men developing osteoporosis that may change things.

[Missus835]

I can't take AA at all and so have annual Zoledronic Acid Infusions. Also have severe osteoporosis with 10 vertebral fractures. My height, once 5, 3 is now 5 ft. I wouldn't have thought so until the Osteoporosis Specialist measured me. If your Dexa is that far off should you not mention it to your doc?

[Golf123]

I think I will. It's only recently that I have questioned myself about the incorrect information on my Dexa, albeit 4 years ago. I have read that operator errors, although uncommon, can happen.