The dreaded AA.....

[Temoral]

My dexa results at minus 3 and minus2 indicate I should take AA, but the side effects are frightening to put it bluntly. I have only ever broken a toe. I am now starting Dencercise, which is weight-bearing regime every 3rd day, followed by protein drink to improve muscle strength. Any advice gratefully received...also suspicious that AA drugs are probably made by same firm as the default scan....

[MrsNails]

There’s a great Post in FAQ’s - l add the link below

healthunlocked.com/pmrgcauk...

I hope you’ll find it helpful.

MrsN

[Temoral in reply to MrsNails]

Thank you...I'm probably just being over cautious/anxious...you ladies who have been battling and weighing up risks over the years are invaluable. Enjoy the sunshine everyone.

[DorsetLady PMRGCAuk volunteer]

MrsNails has given you link to lots of info.

But if you really do need AA, I have to say I took it for 4 years with no issues whatsoever ever…..as have others on here.

[Dubonnet in reply to DorsetLady]

I am also taking Alendronic Acid with absolutely no side effects, after stupidly falling down some steps and breaking my leg ! The doctor was adamant it was the best way forward as the DXA scan showed I was liable to more breaks…even though I am fit and walk regularly . So I have done as I was told and take the tablet once a week and it hasn’t been a problem at all.

[DorsetLady PMRGCAuk volunteer in reply to Dubonnet]

I have 3 joints replaced since coming off AA - and all associated bones have been fine, no sign of osteoporosis. Still taking VitD/Calcium as suggested at last DEXAscan (post AA but pre replacements)…plus VitK2

[Koalajane]

Hi, are you taking d3/calcium and k2 as well as the weight bearing exercise?

[Temoral in reply to Koalajane]

Not the K2....Good idea?

[Pr0jection in reply to Temoral]

Sometimes people don't react too well to the Vit K2 supplements. I'm one of those so I take goat's kefir 3 times a day which has natural K2. It's also very good for tummy problems associated with taking pred, or gastritis.

[Koalajane]

Yes it sends the calcium to the bones and not the arteries

[Temoral in reply to Koalajane]

Just watched the video on the Mrs Nails feed....agrees with possibility of bone loss reversal via K2, load bearing exercise and good plant based diet...thank you.

[PMRpro Ambassador]

Not as far as I know - although originally the company did provide scanners to doctors offices in the USA for the research but they were portable things not the dexascanners hospitals radiology departments use.

While the approach you are using is very good - it is more preventative than curative and was something that would have been far more reasonable some years ago. Like so many things. Being at the borderline point does mean something a bit more concret may be required - believe me, spinal fractures are both very painful and very disabling if you are unlucky.

AA is NOT the only option and many people do take it without problems. Anyone with swallowing or gastric problems probably shouldn't take oral bisphosphonates but as i say, there are alternatives if there is good reason to think you need them. Like everything it is wrong to push them if they aren't required which is why we often say, no dexa, no AA. Show me I need it first - then we will discuss it. But I think you do need to discuss it sensibly with an expert. You are in the UK - call the ROS helpline:

theros.org.uk/

[Kendrew]

Just to add to excellent advice already offered.... I was always never going to take biphosphonates without evidence that I required them and unfortunately my DEXA scan showed that I did indeed require them. I'm now almost 3yrs down the road and I've not experienced any of the possible side effects..... so far so good!

[Temoral in reply to Kendrew]

Thank you...always good to have balanced views...although still wrestling with the decision....but def including the exercise plan and the K2.

[Kendrew in reply to Temoral]

I know it's a difficult decision to make and your situation is unique to you. Everyone taking AA will have a different experience but at least you know that many people can take it with few.... if not any.....of the side effects.

I take Vit.D3 and Vit.K2 also.

[Temoral in reply to Kendrew]

Very true...thank you

[bussell]

At the moment waiting for the result of my dexascan. The last one was three years ago and showed osteoporosis (at the time I did not ask for details, now I know better). It will be interesting to compare. In the meantime I have had two infusions of zolendronate (no apparent side effects at all). No dental problems so far and my dentist does not seem unduly concerned.The alternative, ie worsening osteoporosis, is something to give thought to. One of my dearest friends, in her mid eighties, is an example of what you don't want to happen. She is very bent, in constant pain, has had some fractures, including spontaneous fractures of vertebrae and two bones in her foot, and lives in dread of another one. She is pretty much housebound. This is not a good scenario and for me at least prompts me to carry on with extra calcium, vitamin K2, good diet and whatever else I can throw at it!

Best wishes with a difficult decision.....

[MrsNails in reply to bussell]

Have a look at the the link on Bone Health in FAQ’s - there’s more you can do that just medication - the link is above ⬆️

[Towdy]

Have a read of YourBones by Lara PizzornoI am AI having taken pred for 11 years. I take calcium, mg, , but D & k2, & boron daily supplement but only osteopaenia .

[Temoral in reply to Towdy]

Thank you...I will look for it...yes heard boron is also important. The opinions fall almost equally into 2 camps...yes take it to avoid a wheel chair, and no its side effects present high risks. .....Will hopefully discuss with GP...rheumy very dismissive of opinions which don't match his, or delay his phone appt time allocation....

[Pr0jection in reply to Temoral]

My rheumy sounds like yours! He isn't particularly open to new ideas or different opinions but he's got me this far..... I have mild osteoporosis in the lumber region, and my rheumy was insistent that I take AA. After much thought, and feedback from this great site, I declined. Like many others on here I'm on a healthy low carbs, no sugar eating plan with full fats/calcium rich foods as well as the recommended supplements. Some of us are more prone to osteoporosis than others and that might be the case with me but it doesn't necessarily mean it will result in fractures. I'm almost 80, fit and active, and may just have to accept that growing older brings these problems to light. I've been on 7.5mg now since August 2020 and I'm trying the very very slow taper to get down to 5mg.

[Temoral in reply to Pr0jection]

Thank you.

[PMRpro Ambassador in reply to Temoral]

Funny - been on pred at above 10mg, sometimes well above 10mg, for over 12 years. Last time we looked my bone density had not changed significantly, is well in normal range and nowhere near osteoporosis - and I'm definitely NOT in a wheelchair! The osteoporosis guru here said "just keep doing what you are doing!"

[jinasc]

HeronNS

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to jinasc]

The links don't work - even from the email notification

[jinasc in reply to PMRpro]

That I did not know thank you.

[MrsNails]

I’ve already posted the link above ⬆️

[Bluesew]

I took risidronate for 5 years with no side effects at all.

[Rosina1871]

I’ve been taking AA for a couple of years without a problem.

[jsheard]

I’ve been taking it for 3 years ,no problem.

[Barbaracole]

I have been of an infusion of Alendronic acid I my second year so far so good .Hope you continue learning from good advice above.

[Temoral in reply to Barbaracole]

Thank you everyone....managed to secure a GP telephone appt for today...🙏

[Heron82]

Any bone break increases the risk of osteoporosis which is an extremely painful and debilitating condition. Add prednisone onto to that risk and the chances of developing this condition are heightened. It depends whether or not you want to take this risk? Personally I think it is a no brainer and have been taking AA for 2 years now with no side-effects. However, you must make the decision that is right for you. Good luck and enjoy the sunshine.

[PMRpro Ambassador in reply to Heron82]

Other way round really - osteoporosis increaases the risk of a break. Fractures can be the result of osteoporosis

[Harrywogan]

Temporal try it first and if you feel bad them speak to gp.Ive taken it for 4years and no side effects, dont read side effects just take it and you may be surprised. Take Care .

[humlies]

I took AA for 8 years then gave it up after discovering (not from a GP!) that this was too long a period. However during this time my bone density actually improved. Am now taking it again because of pred. effects; as far as I know I am coping with it without any problems. So hard when having to weigh up the possibility of side effects with the undoubted benefits; my suggestion too is that you try it for a time.

[Wizards]

Hi thereI just wrote this the other day for another lady.

I lost 8% bone loss in the 1 st year and my rhumitologist wanted me to go on bone density drugs.

In doing research I found they harden the bones which makes them break easier.

Spoke with my GP who is excellent and he is definitely not in favor.

What I didn't say in my last post my sister went through something extreme with bone loss also and she too went heavy into weight bearing exercises like myself along with a regime of vitamins and food and both of us have built bone.

What do you have to loose.

[Purple-Owl]

I have been taking Alendronate, starting with Fosamax, for 18 years, with 2 one-year breaks. Yes i have osteoporosis but can.t think of any side effects.

[DAW28]

I took Alendronic Acid for 3 years with no side effects. I found the pills hard to swallow so switched to an infusion once a month. The infusion is called Zolendronate. Hope this helps.

[Uglow]

Just back from gp Says she wants me to take AA as my X-ray shows fragile fractures. 4. I’m really scared of this but will try for a month. If I’m going to get side affects does anyone know how soon they appear. I’m so nervous of this drug after reading stuff on here and online. Any advice please anyone.

[MrsNails in reply to Uglow]

Read through this Post & look at Bone Health in FAQ’s

healthunlocked.com/pmrgcauk...

[Uglow in reply to MrsNails]

I have read! I had a dexa in 2015 and in 2021 my rhyming said no difference. Shall I pay for private dexa before making a decision do you think m?

[MrsNails in reply to Uglow]

What were your Scores at previous scans?

[Uglow in reply to MrsNails]

I don’t know I’m trying to acquire from Gp

[Uglow in reply to MrsNails]

She also said I’m on 12mg pred and should come down 1 mg every 3 weeks until about 7 mg. I said I come down .5 she said that’s only for when you lower on pred. Your opinion please.

[DorsetLady PMRGCAuk volunteer in reply to Uglow]

Guidelines says below 10mg -reduce 1mg every 4-8 weeks depending on patient’s wishes and disease activity.

You may be able to manage until you get to 10mg as per her instructions-but you won’t know until you try..,

[MrsNails in reply to Uglow]

Most people can manage 1mg to 9mg (ie 10%) per reduction 3weekly is a bit on the right side but from 9mg go in 0.5mg as the percentage increase becomes larger on lower doses.

I’m just going from 10mg-9mg on a Slow Taper but l will ‘rest’ at 9mg until l’m ready for the next step but this is with My Consultants Approval.

You haven’t had an easy time tapering so slow is preferable to failing & having to go back up but you need to discuss with your Doctor especially if you now have bone issues.

[PMRpro Ambassador in reply to Uglow]

Where is the GP saying there are fragility fractures? Do you have pain?

[Uglow in reply to PMRpro]

Yes

[PMRpro Ambassador in reply to Uglow]

And where are the fractures supposed to be? Are they identified on an x-ray?

[Uglow in reply to PMRpro]

Spine

[Uglow in reply to PMRpro]

I’m in process of having dentures too and have temporary but have to wait 3 months for permanent and don’t want to affect that

[Uglow]

Yes and I found this

Photo

[PMRpro Ambassador in reply to Uglow]

And did you start the risendronate? Have you had your spine x-rayed?

[Uglow in reply to PMRpro]

Spine xrayed few weeks ago and was never given

[Predsharer]

Everyone diagnosed with osteoporosis should be given a Fracture risk assessment using the FRAX tool. This information gives a clear indication of how likely you are to get fractures in the next ten years. Armed with this information you can decide whether you want to take the risk or the medicine. You will feel more in control of the decision if you have all the facts and so many people are not given them.

[Temoral in reply to Predsharer]

Thank you...I was unaware of this...do you get that via GP?