To take Alendronic Acid or not

[Rebel21]

My GP has contacted me and wants me to commence Alendronic acid for steroid induced osteoporosis. I asked him about a bone scan but he said no need as I need the treatment regardless of the results of a bone scan. The only problem is I do not feel happy taking Alendronic Acid with all its side effects. I already suffer terribly with heartburn and reflux and also recurrent vertigo. I just wondered if anyone here has any advice for me.

[PMRpro Ambassador]

If you already have reflux problems - then AA is contraindicated. End of. There are other options.

But in over 7 years my bone density had barely changed from a sight osteopenia 2 months after starting pred and much of that time was at between 10 and 15mg/day. I am not the only one on the forums with a similar story - loss of bone density is NOT inevitable and the only way to know is to have a dexascan.

My mantra: no dexascan, no bisphosphonate of any sort.

[DorsetLady PMRGCAuk volunteer]

If you haven’t had DEXA scan how do you know if you’ve got osteoporosis (whether steroid induced or not )?

Until proven you have osteoporosis then no need to take AA. GP talking rubbish!

If you are taking a VitaminD/ Calcium supplement(which should be prescribed alongside Pred ) that is normally enough to protect bones.

PS - I’m not against A.A. per se, I took it for 4 years due to my own circumstances and never had any issues with it. Recent DEXA showed normal (3 Years off Pred) - but continuing with VitD/Calcium as recommended and happy to.

But why take medication if it’s not required?

[Hidden]

4years of pred, 2 dexa scans and bones fine. In fact they said I could stop calcium supplement.

[Koalajane]

I was prescribed alendronic acid on my PMR diagnosis. After taking 3 tablets I stopped due to heartburn problems and did a bit of research and decided no thankyou. 18 months later my doctor sent me for a dexascan which showed very mild osteopenia and was told to carry on with the d3 and calcium and have another dexascan in a years time which I did. I got the results last week and my bone density is now normal. So as pmrpro says no dexascan no bisphosphonates.

[MhairiP]

Very strange... how does your GP know you need the 'treatment' if you haven't had a dexa scan to show you need treating?!

I took alendronic acid for 6 months (dexa scan showed low bone density) but then I stopped. I didn't suffer any side effects apart from psychological - latterly I could barely swallow the tablet because I'd got myself worked up into such a state! I'm no longer taking AA, but I'm doing everything else I can for my bone density - exercise, supplements, diet.

[Tamtan2 in reply to MhairiP]

I have been on alendronic acid with severe pain beh8nd ribs and finding swallowing difficult when taking alendronic sticking feeling as it goes down I haven’t had a dexascan I’m not happy on this medication as there is no evidence I have anything wrong with my bones. It’s worrying me.

[PMRpro Ambassador in reply to Tamtan2]

If you are having difficulty swallowing it then stop taking it and speak to your doctor. Difficulty in swallowing is one of the absolute contraindications for AA and so is absominal pain after taking it.

[jinasc]

Five years of pred, with GCA , bone scan, 1st one at six months, bones 97%. They never moved and the last scan at 5 years, still 97%.

Ask s/he if they would take a drug, when their is a test to see if you need it or not .

Too many 'just in case' handed out like sweeties.

[HeronNS]

I was actually recommended to take AA after a DXA scan, because of a combination of factors, not just the pred or my t-score (-2). However I refused and following advice from a friend who'd lifted herself naturally out of osteoporosis and additional reading in one year I'd improved my t-score to -1.6 and they no longer recommend drugs.

Here's my story: healthunlocked.com/pmrgcauk...

[Rebel21]

Thanks for all your comments and advice, I think deep down that I had already made my mind up to refuse the treatment without a scan, my mum had osteoporosis and took AA for a short while but it didn't agree with her. I saw my dentist today as advised by my gp before any commencement on AA and she does not recommend starting it if not needed. Think I will just ask for the calcium and Vit D supplements, which they haven't even suggested yet. Thanks once again, do love this forum, feel much happier now.

[SnazzyD]

I refused to take it until I had a DEXA scan and it turned out that although I had osteopaenia I didn’t need AA. Docs still suggest I take it but I say no on the grounds that I have a cancer gene the same as my uncle and he died of oesophageal cancer and I was prone to reflux already (that has now stopped after 3 years of Pred after decades). My DEXA in the next year will see if my bone health measures have worked.

[SheffieldJane]

Your GP is talking nonsense. Don’t be coerced into taking unnecessary strong medication so he can tick a box. Stay pleasant but insist on the DEXA Scan first.

[Hidden]

Morning Rebel, I too have been prescribed the Alendronic Acid, and like you are loathe to take it. I did start the high dose of Calcium D3 yesterday that are on prescription too. These must be taken with K2, which I've already been taking for years when I've purchased D3. (I will continue to take K2 along side the calcium). Blood test results showed that I'm a little low in calcium, so hoping that the calcium will help that. I will request another blood test in a few weeks to see if my calcium level has risen, if it has I won't be taking the Alendronic acid. I was also prescribed Omeprazole 20 mg twice daily. I do not suffer from indigestion or reflux, but was prescribed as a precaution as steroids upset stomach, my rheumatologist informs me. I too am going to request a DEXA scan via the NHS as private hospitals local to me don't have the DEXA scan, so would mean a CT to check my bones. I don't want all the radiation from a CT scan so hoping my GP will agree for an NHS DEXA scan.

Regards Anne

[Arflane97G]

I was diagnosed in September, had dexa scan a couple of weeks ago, was reassured that I was low risk but some concern because I had broken my elbow dec 2018. Is this because I live in London near a fantastic teaching hospital with lots of resources or just different approaches taken by rheumatologists??

[Spanky2019]

Insist on a dexascan. See what your numbers are so you have baseline. Follow guidelines for natural bone building/maintenance first. I take 1500 mg per day naturally thru food intake. Also, prescribed 50,000 units vit d3 per week and 2000 mg vit d3 per day. I was dx with osteoporosis 2 weeks after gca dx. Dx with osteoporosis (-2.9 ) is not steroid induced. I went on boniva (i.v. every 3 months). It is scary to be on but I have such a hard time going against what DRs (including my son) who said to go on it. The truth is no matter who makes decisions you're the one that ends up with the results. Anyway, be strong, do your homework, listen to these knowledgable volunteers. These people have been around the block and know more than most DRs. Best wishes!

[PMRnewbie2017]

If GP won't organise a dexa scan could you get one privately? They should not be that expensive. I had one done at The London Imaging Centre 2 years ago, self referral and under £100. I received the results and report before I left the clinic.

In uk the NICE guidelines stipulate AA should be prescribed with long term steroids. By not prescribing it the GP is breaking their NHS contract. As a patient you can refuse and the Dr will make a note on your medical records that you have refused treatment. This covers them in case you have a fracture later which causes you serious injury. Biphosphonates should not be prescribed unless the patient has signs of bone loss and that cannot be determined without a scan.

[DorsetLady PMRGCAuk volunteer in reply to PMRnewbie2017]

I think the wording is nearer - “we recommend the use of bone protection” - but there are certain criteria - and depending on which you fall into, a DEXA scan should be carried out before AA prescribed.

However, individual doctors may well read it as you say - re subsequent fractures. But at the end of the day it’s the patients choice.

[Squiggie]

Hello. I have had to take Preds a few times in my life, for MS and recently just came off them last August for what my doc thinks was PMR. My recent DEXA scan has proven to be a little worse since my last long Preds treatment. I was prescribed Alendronic along with Calcium and D tablets. I found the AA made me feel a bit headachey the day I took it and a extra grumpy too. (Don't laugh, but the pharmacist confirmed moods as a side effect.) I cannot tolerate large doses of C and D in tablet form and after trying AA three weeks on the trot each time my digestion complained and I had very bad "dire rear". GP may offer me an alternative, but as my Osteoporosis is in the red zone he might send me to a Rhuematologist for alternative treatment. I am 70 this year and broke my upper arm in 2018 due to a bad trip up.

[keepfitdoll]

Hi rebel

You should certainly have a dexa scan. How do you know if you have anything wrong with your bones? I took AA for 10 weeks then stopped. I do have osteoporosis and have had it before taking steroids. However, I was concerned about stomach problems and my teeth falling out. There is no guarantee it will do your bones any good. I like to do exercise which helps bones. Also plenty of calcium in the diet. All these drugs are experimental. Good luck

[PMRpro Ambassador in reply to keepfitdoll]

Really don't see how you can describe bisphosphonates as experimental since they have been through clinical trials and been in use for nearly 20 years. I don't say they are perfect and their use should be restricted to when they are needed. But experimental? No.

[pennyw Administrator PMRGCAuk team member]

We have a report just posted following the Kent: Orpington support group meeting where the speaker was a consultant rheumatologist whose special interest is in osteoporosis.

pmrgca.co.uk/group-pages/or...

[DorsetLady PMRGCAuk volunteer in reply to pennyw]

Hi Penny

as the subject of osteoporosis/AA comes up quite a lot would it be an idea for you to raise a new post with link - and then maybe Pin it?

[pennyw Administrator PMRGCAuk team member in reply to DorsetLady]

Hi Dorset Lady

Good idea. I will do that when I am home. Away for a couple of days. Thank you for the suggestion.

Penny

[PMRpro Ambassador in reply to pennyw]

It is very good and I had to laugh at the start, I could have written a lot of it - but there are glaring misapprehensions in there, not least the comment that patients are on pred for PMR for 1-3 years! And nor is loss of bone density on pred inevitable - mine hadn't budged after over 7 years on pred and I know several other ladies with similar stories.

I think the lady requires a read of Matteson's work:

medpagetoday.org/rheumatolo...

As for avoidance activity - I am left to wonder how many PMR patients could skip or go for a brisk walk!!!!!!