Can I just stop AA: hi everyone just a question... - PMRGCAuk

PMRGCAuk

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Can I just stop AA

9lives
9lives

hi everyone just a question about AA, is it ok to just stop taking it?

I was diagnosed in 2016 with PMR and 18 months later had a dexa scan which showed I had osteoporosis in the lower back. I can’t remember they exact numbers but it was only just in the realms of the lower end so was given Alendronic acid tablets 70 mg to take weekly. Dr at the time said I had to take them for 3 years then another assessment.

I was reluctant to take them but did. I read Kate book about bones a while back and did lots of research into AA none of which was good .

So now 3 years on my Dr says I have another 2 years on them .

I have decided I don’t want to take them anymore. But haven’t told Dr yet.

Also I have been changing my diet to include more calcium and over the last few years have taken up Pilates and more recently doing loads of walking. And just ordered a weighted vest to help with weight bearing. I’ve always done yoga and still do .

Any comments would be greatly appreciated

Carole x

56 Replies

In terms of can you just stop it without tapering, yes you can. If you want to read my story, here it is, and you may get some more tips on things you can do to carry on caring for your bones without medication. Best wishes!

healthunlocked.com/pmrgcauk...

9lives
9lives in reply to HeronNS

Hi HeronNSMany thanks for your swift reply it certainly gives me hope. You have done so incredibly well and have inspired me to do like wise.

I’ll check out the links at the end . I think my ‘carrot’ to motivate me will be the AA that I will have to take if I fail !!

Take care and again many thanks xxx

Carole x

PMRpro
PMRproAmbassador

Yes, you can just stop it. It has no rebound effects - different matter if you had been on Prolia/denosumab.

Can you get another dexascan? The more recent recommendations are to take a holiday from AA sooner - 3 years gets mentioned. Having an improved or at least unchanged result would help your case.

9lives
9lives in reply to PMRpro

Hi PMRpro

Aww that’s good to hear after 3 years you can take a break from AA, which is what my original Dr said. But as we see different Dr each time we have an appointment at the surgery, difficult to get continuity.

My last Dr says I cannot Get a dexa scan before 5 years, so I may have to pay but could push for it I guess. Although I don’t mind paying for it , but would need to get Dr referral in order to do. So it’s a possibility.

Many thanks for that and hope you are doing well xx

Carole x

PMRpro
PMRproAmbassador in reply to 9lives

You have been on pred and AA - you are not just anyone asking for a repeat dexascan. Though that is what the ROS site says. You used to be considered for a repeat after 2 years - I was turned down because the request went in after about 20 months although I wouldn't have been able to get it done until after 2 years. I prefer the system here - I can have one when I want and don't need a script, it costs me 37 euros! I had thought it was subsidised by the regional health service but it isn't, it is privately done. They have the scanner and do it to fill up the time on it rather than wasting it.

9lives
9lives in reply to PMRpro

See, I think it’s a good idea it helps them to pay for the scanner so win win and I think people would be happy to pay for it or any type of scan because it gives you peace of mind. Rather than be told you have to wait another couple of years. Also you can see how you are progressing or not.Hope your bones are good 😌

PMRpro
PMRproAmbassador in reply to 9lives

Oh mine are very good - without ever having taken AA.

The decline of the NHS started when pay beds were removed from NHS hospitals. Part of the wide availability of things in Germany is because they purchase equipment for private use and mere plebs not on the private top-up schemes get to use them out of hours. During pregancy I had scans done at midnight! But I had fancier stuff done that was avaialble "free" in those days.

Hi Carole,I am aware of a private place in London which will allow you to self-refer for DEXA. (oryon.co.uk/imaging/). The last time I looked the cost for a private scan was £65. I assume there are other places where the scan may be available under the same conditions (i.e. without a formal referral). It seems like a good place to start.

Thank you for that I’ll take a look x

Koalajane
Koalajane in reply to 9lives

My doctor referred me for a bone density scan and I was told to ask for another one in a years time and then after being told my bone density scan was fine was asked to ask for one in 2 years time.

9lives
9lives in reply to Koalajane

That’s interesting are you in the uk ?

Koalajane
Koalajane in reply to 9lives

Yes in Shrewsbury, Shropshire

9lives
9lives in reply to Koalajane

So I guess I could go back and ask again then 🤣👍? “If you do not succeed try and try again”, as the saying goes xx

Glad your bones are good , such a relief xx

Koalajane
Koalajane in reply to 9lives

The d3 and calcium plus the walking I do has helped my bones

9lives
9lives in reply to Koalajane

That’s good to hear👍I think walking is one of the best exercises we can do, if we are able too that is. I’m on the calceos tablets and I’m quite excited as my weighted vest has just arrived , so looking forward to walking tomorrow xx

Casia
Casia in reply to 9lives

Can I ask where you can buy a weighted vest? Thank you.

9lives
9lives in reply to Casia

Hi Casia I got it off Amazon. They have quite a selection, in really pleased with it. X

Casia
Casia in reply to 9lives

Thank you. Great idea as I do a lot of walking and Pilates which are great but I think additional weight will be really beneficial.

Frewen1
Frewen1 in reply to 9lives

Had never heard of weighted vests... shall investigate.

9lives
9lives in reply to Frewen1

Yes I read about it on a post from here, but can’t remember who, but apparently they help to promote bone strength xxGood luck x

Frewen1
Frewen1 in reply to 9lives

Thank you! You too x

Sefu
Sefu in reply to Koalajane

Hi how much calcium do you take daily ?

Telian
Telian in reply to Koalajane

I get mine like clockwork bi-annually on the NHS. Used to be in Southend now moved to West Yorkshire and from request to receiving appointment was less than a week. Appointment for next week.

Koalajane
Koalajane in reply to Telian

That is really good. My GP surgery asks me to ring them so they can contact the Orthopaedic Hospital which is where it is done. Apparently there is no way that the hospital can book it automatically. When I ring there is never a problem.

Telian
Telian in reply to Koalajane

That’s right referral has to come from a Doctor. New GP did query if it was bi-annual - he didn’t know really.

Don’t know what he found out but he did the referral when I insisted I have it.

diana1998
diana1998 in reply to 9lives

I have a dexa scan every 2 years approx, on NHS, no problem.

What I've noticed after several years of following the forums is how many people took AA for not all that long, not as long as you even, stopped and upped their game with nutrition and exercise and years later have been fine! The alendronic acid stays in your bones probably forever so whatever good you have received from it over the last while is not going to stop, it will continue to be there.

It does make you wonder whether they should really offer dexa scans to everyone at, say, 50 with some education about nutrition and exercise and it might save a lot of money in the long term...?🤔

I don't know why we aren't given bone health education in the same way we are taught about the evils of smoking, alerted to the signs of stroke, told how to keep heart and brain healthy..... I had a tibial plateau injury when I was nearly 67 (ice related accident) and no one ever mentioned that I should have a DXA scan, or indeed said anything other than what related directly to the injury. I had a scan at my request after starting pred and my doctor wanted to put me on AA as a precaution. It happened that I was aware we achieved peak bone density at about age 35 and I was fortunate when I was in my late 40s I started a job (working in a library) which involved a lot of hefting weight and pushing and pulling and basically being quite physically active. Also I had taken up walking to deal with depression. So it was mere luck that my bone density remained as good a sit did, but it would not have taken much for me to have been in very good rather than marginal shape when I had the DXA scan if only I had known more.

9lives
9lives in reply to HeronNS

Hi HeronNS Thank you for all your information, Yes that’s an interesting comment, and also an important one. I think it would be an excellent idea. And over time could save the NHS a lot of money.

Like you I broke a bone about 3years ago in my humerus, it healed very quickly and they were pleased with the speed at which it recovered x

I also do a physical job, so guess things could of been worse x

I don't know why we aren't given bone health education in the same way we are taught about....

Possibly because osteoporosis etc is largely seen as just a female thing....?

9lives
9lives in reply to Highlandtiger

Yes could be right there x

Could be right - we are only just learning that heart attack signs, and even treatment, are different in females

Ha! We've both remembered what we read in ‘Invisible Women'! 📖

I finally got to read it. It arrived just after the libraries reopened after first lockdown and I completely forgot until the hold had expired and it had gone on its way. I placed a new hold and about four months after that I finally got it. It's hugely popular because they have multiple copies at the library! I think it should be required reading for everyone in positions of decision making which affects other people.

Sefu
Sefu in reply to Highlandtiger

I feel strongly the schools should teach proper food nutrition rather than the relatively horrible waste of time baking a victoria sponge and make a good salad.

9lives
9lives in reply to Highlandtiger

Yes definitely xx

Telian
Telian in reply to HeronNS

I only took it once - felt okay for three days then began to feel unwell with very high BP. Couldn’t stomach the next dose - symptoms gradually subsided. Rheumie just said it sometimes happens and changed it.

HeronNS
HeronNS in reply to Telian

You kind of lost me when I first read this, You must be referring to 9lives original post above?

I was given AA in July 2017 when I was first diagnosed. I only took it once and it gave me the most terrible burning sensation in my oesophagus. The rheumy advised me to stop taking it and to have an infusion instead. I was booked in for this but at that point started to research the matter for myself. Everything I read about bisphosphonates put me off completely and I cancelled the appointment. It was then suggested that I take a different oral version, Risedronate Sodium. Again I took it only once and this time I didn't have any immediate nasty reaction. Nevertheless I was very unhappy about putting it in my body, so didn't continue. The rheumy and my GP have outlined the risks as they see them, but accept that I've made the decision not to take them.

9lives
9lives in reply to Marijo1951

Aww dear sounds horrible, it’s very hard to feel pressured by the Gp into taking something you are not happy about, good for you to decline.I never had any bad reactions to the AA but like you just did research.

Hope things are going well for you xx

Hello 9lives.. my GP wanted me to go on AA last September, but I asked for DXA scan first. I was due an NHS DXA, but because of Covid it couldn’t be done, so I was allowed to self refer to the Diagnostic Department at the Nuffield Hospital where I live. It was done within 2 weeks. It showed osteopaenia, and the GP put me on AA. It caused so much pain in my osteoarthritic knee which began 2 weeks after I started the AA, that the GP stopped my taking it, and the knee pain ceased! I walk, and have been taking AdCal for a long time. He wants to put me on Risedronate but I think that causes similar problems?! Very good wishes to you and hope all goes well. Autumn 🍂 xx

9lives
9lives in reply to autumnlass

Thank you for your wishes, and good luck to you too. I thought if you had osteopenia that maybe you don’t need bishopnates, only if you have osteoporosis? Xx but could be wrong xxGood luck xx

Hi, Prof Dasgupta said as a “prize “ I could come off AA when I got down to 5mg: and yes, I just came off , no problem : different . I believe with Omeprazole? Good Luck x

9lives
9lives in reply to Maisiek

Yes you are right regarding omeprazole it has to be reduced slowly.Well done for getting down to 5 mg and off AA

Hope you doing good xx

Maisiek
Maisiek in reply to 9lives

Thank you - shoulders a bit achy but I’m determined to persevere - paracetamol at night helps .

Just want to say, I can’t thank everyone enough , for your replies. It’s so uplifting as I was feeling a bit concerned , but having read all your advice and experience I am feeling much more relaxed about it.These things can really get to you, can’t they. I am going to contact my surgery next week and start the ⚽️ ball rolling.

Will let you know how it goes.

This site is so invaluable , just to be able to discuss things with people who not only understand but care as well xx

A big thank you xx

Hi9lives I've been on AA for 3 years and never had a problem the only person that doesn't like it is my dentist he said and this was his words it's a load of shite,I had DeX scan and my bones are not to bad but have oestoporenia have now started taking once every 2 weeks as I dont think I need to take every week didn't ask GP because at th moment thy are not interested dont know the last time is one so I work it to suit myself. Good luck we all need it.

9lives
9lives in reply to Harrywogan

Yea that about sums it up 🤣🤣

Alchemy8
Alchemy8 in reply to Harrywogan

The point is that if you are taking AA and you get an abscess or issue with your jaw you have to see a dental surgeon as it can cause osteonecrosis of the jaw. See Lara Pizzorno, Strong Bones.

Harrywogan
Harrywogan in reply to Alchemy8

Hi Alchemy8 my dentist explained everything about it if he has to pull a tooth the bone may not heal and can cause a lot o problems.

9lives
9lives in reply to Alchemy8

Yes I remember reading the book, it’s scary isn’t it.You wonder why we are prescribed such things.

Hope you doing ok.

Alchemy8
Alchemy8 in reply to 9lives

I always read the small print - one of the reasons that i ended up in bed pretty immobilised for a month refusing to take steroids - until I realised I had to!! Thanks 9 Lives. The story keeps unrolling and on so many fronts from physical to emotional. Having PMR (and potentially underlying conditions - seeing my third rheumatologist on Friday who I hope is bit better than the previous two) is a fulltime job. Thank heavens I have retired - or was forced to.

9lives
9lives in reply to Alchemy8

Yes I’m with you on the full time job !! Although funny enough my Dr had no inclination to send me to a rheumatologist, it was this site that brought it to my attention. My Dr was very quick to diagnose me with PMR and start the steroids, and I am grateful for that but she said I would be on steroids for around 18 months!! Ha ha .

( I’m 4 and a half years in now), I did end up paying privately for a rheumatologist who was very thorough

But if I’m honest he only really confirmed what my Dr had already said so I could not see the point in having anymore visits. I’m lucky that my Dr let’s me do my own reduction plan , she feels I know my body best and I check in every now and again.

Good luck with your third rheumatologist, they say third time lucky don’t they 👍xx

I guess as long as we have more good days than bad then the future is bright 🌞xx

When I saw my rheumy just before Christmas he said to stop AA, didnt say why, but I didnt argue with him. Stopped it straightaway and didnt notice any difference. Except that I can now eat grapefruit which was a no no.

9lives
9lives in reply to Mary73

Awww that’s unusual, but I would not argue either 🤣x hope you doing good x

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