L1 = -3.0, L2 = -2.5 Have been prescribed Alend... - PMRGCAuk

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L1 = -3.0, L2 = -2.5 Have been prescribed Alendronic Acid but I am really concerned about taking it. Need advice/shared experience.

Pr0jection profile image
Pr0jection

In May 2020 I had a dexa scan which showed L1 and L2 vertebrae as -2.0 and -2.2 respectively. After starting on 15mg prednisolone in August 2020 and reduced to 7.5mg in October I asked my rheumatologist if I could have another dexa scan. My mother had osteoporosis as a result of being on steroids, hence my concern. I saw my rheumatologist today and he said that the latest results (in above header) show that there is an increased risk of a fracture and has prescribed Ledronin 70mg (Alendronic Acid) to be taken once a week on an empty stomach and not to lie down for at least 2 hours after taking it. I have been feeling very well and despite suffering from gastritis on occasion, have managed to overcome this by taking goat's kefir. I also intend to start the slow tapering so I can get from 7.5mg to 6.25mg in 7 weeks, or longer if necessary. This latest news has rather thrown me. I do not want to take more medication and especially this one which can have bad side effects including joint and muscle pain. I'm not sure how to approach this positively so any help would be appreciated.. Thank you.

44 Replies
PMRpro profile image
PMRproAmbassador

Who said not to lie down for 2 hours? The usual instruction is 3/4 hour - by the time you are out of bed and had a shower you can have a cup of tea! And it is only once a week.

Is it really just the odd attack of gastritis - no difficulty swallowing normally? Swallowing or gastric problems are a contraindication - and there are other options besides alendonic acid including annual infusions. That is a considerable deterioration in under a year so you really do need to be on something, the supplement and exercise route is more an add-on than an alternative now.

You could call the ROS helpline and they will explain your options and the whys and wherefores.

theros.org.uk/

Pr0jection profile image
Pr0jection in reply to PMRpro

Thanks PMRpro. I have friend who used to take AA and says 2 hours is over the top, but my rheumy whilst being very knowledgeable can also be a bit OTT too! I'll probably take this month's supply and see how I go. As you say it's quite a deterioration, even though the other areas show an improvement.

I took Ibandronic acid - you take it once a month rather than Alendronic Acid once a week. You have to sit up for an hour after taking it on an empty stomach. I took it for three and a half years with no ill effects and stopped as that is now advised. Osteoporosis is horrible so maybe it’s worth having a go, I do recommend the Ibandronic acid though - saves a lot of time! 👍

I have GPA, adrenaI insufficiency and osteoporosis. have been taking alendronic acid for a few years. I take it on waking with a glass and 1/2 water and sit upright for 30 mins. Yours obviously has different instructions. The benefits of all the medication I take now outweighs the side effects.

Hi PrOjection. Before PMR diagnosis, wouldn't take so much as a paracetamol unless absolutely necessary! Now I'm taking steroids, biphosphonates, and beta blockers!! I've been on alendronic acid for two years now and to be honest, I can't say I've had any problems. I take 70mg weekly and advice was to take at least 30mins to an hour before any food and then to stay upright for at least 30mins afterwards. (no lying down as this may inhibit transit down into the stomach) I usually sit up in bed and read or get up and have my shower etc. I've worked hard to help improve my bone density with daily walks, calcium and vit-D3 and K2 supplements, a 'bone supportive ' diet and yoga for osteoporosis. I go for another DEXA scan in a few weeks....last one was 2yrs ago......I'm interested to see if there's any improvement and if it's significant I want to come off alendronic acid. We'll see whst happens though.

Obviously steroids and biphosphonates can do a lot of damage but there's much you can do to minimise the side effects as I've discovered. Make sure you research, enquire and learn as much as you can. Will make such a difference.

Pr0jection profile image
Pr0jection in reply to Kendrew

Thanks for replying....

autumnlass profile image
autumnlass in reply to Kendrew

Hi Kendrew .. you mentioned K2 in your post to PrOjection to help with the bone density. I was in a quandary as I take beta blockers as well as steroids PPI and Bendroflumethazide a diuretic also for hypertension. Taking AdCal as well in the mix! Would K2 be beneficial as well as all these medications? Thanks for your help. 🌺

Kendrew profile image
Kendrew in reply to autumnlass

Vit. K2 is essential for ensuring that calcium is deposited in the bones rather than the blood vessels and I've been advised several times on here to include it with the calcium supplements. I don't know if it would interact with any of your other medications so chevck that out first, but I'm pretty sure it will be OK. I'm sure others will advise you.

autumnlass profile image
autumnlass in reply to Kendrew

Many thanks Kendrew for your your reply. I will check with my pharmacist tomorrow as he will be knowledgeable about the drug interactions if any, that I need to be aware of. 🌺

I did speak to Bart our pharmacist yesterday and he shook his head, and did not advise it. He handed me the free kit of COVID -19 Self-Tests though! 🤣. What a strange journey this is! 💐

I see that I’ve just answered myself ... blame the Pred! The replies would be to Kendrew and Grammy80.

Grammy80 profile image
Grammy80 in reply to Kendrew

I know early on in this journey I asked my Dr. about Vitamin K2 and he was dismissive. I think I'm going to go shopping~! It doesn't sound like it could hurt since I"m on many the meds you mentioned. 😉

PMRpro profile image
PMRproAmbassador in reply to Grammy80

Are you also on warfarin/coumadin on the like? They warn against even K2 supplementation.

Grammy80 profile image
Grammy80 in reply to PMRpro

No, I take a beta-blocker but no blood thinners or aspirin. Other than the usual, I do take Keppra (seizure-free 45 years). I feel there is more knowledge on this forum than is readily available to me in Indiana, maybe Chicago. I could check with the Doctor if you think I should. Thanks~!

PMRpro profile image
PMRproAmbassador in reply to Grammy80

I would - because I can't think of any good reason NOT to if you aren't on blood thinners.

Grammy80 profile image
Grammy80 in reply to PMRpro

💖

HeronNS profile image
HeronNS in reply to Grammy80

Grammy80, one thing I've noticed since I began taking Vitamin K2, and apparently this is a known effect: I used to have very sensitive teeth. So much so I can remember phoning hubby once to bring me the tube of sensitive tooth toothpaste because I was so unhappy with my teeth while I was at a volunteer job. I even asked a pharmacist if I could get a supply of the active ingredient (apparently you can, but then I didn't need it as you will see). This problem completely resolved after I'd been taking K2 for a while. I can't give an exact timeline because it wasn't something I was expecting, just began to notice my teeth were not so sensitive. Perhaps a few months? I still don't like cold things or hot things on my teeth - but I never have, not even as a child or teenager. I have no explanation other than Vitamin K2 helping to restore my bone density, because I had already been taking calcium and D supplements for about twenty years. I think this is pretty good evidence that if you happen to be short of K2 (and a lot of us North Americans will be because of the way our food animals are fed) then a K2 supplement is helpful.

PS I still can't buy Vitamin K2 from my pharmacy - only from a health food store! Go figure. No wonder doctors know nothing about it and are dismissive. When I started taking calcium I couldn't get any kind other than carbonate from the drugstore, so I've always bought citrate from a health food store, although I'm pretty sure it's carried by pharmacies now. I can't get the liquid iron supplement recommended by my doctor from the drugstore - but I can from my supermarket and the health food place.... At least our pharmacies have stopped selling cigarettes.

I take nature's Best combined Vitamins D3 and K2 tablets together with their Mega Mineral Complex. I took AA once and it gave me terrible acid reflus. I was prescribed an injected infusion instead but, after reading about it, decided to avoid it. I was then prescribed an oral alternative to AA which didn't give me reflux, but I wasn't happy about it, so only took that once too. I eat 6 prunes per day in accordance with a study that showed that this amount improves bone density. See PMRPro's new post giving a link to an interesting article: healthunlocked.com/pmrgcauk......

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Below are instruction for taking medication - not sure where the 2 hours comes from -

Take Ledronin by mouth on an empty stomach in the morning at least 30 minutes before your first food, drink, or other medicine of the day. Do NOT take Ledronin at bedtime or before you get out of bed in the morning.

Take Ledronin with a full glass of plain water (8 oz/240 mL). Do not take Ledronin with mineral water, coffee, tea, or juice. Do not lie down for 30 minutes after taking Ledronin and until you eat your first food of the day.

More: ndrugs.com/?s=ledronin

As stated it’s only once a week, and if you need it you need it.

I took AA for 4 years...on a Sunday, so no rushing about.

After taking tablet, had a shower, sat down and read emails - and half an hour passed quickly. One lady did her ironing - I didn't! Not my favourite job.

Thank you Dorset Lady, are you still on AA? If not, what made you come off it?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pr0jection

No I’m not on it any more...discussed with my GP at the 4 year mark and we decided I’d probably taken enough - at that time (2016) it was recommended it be reviewed after 5 years anyway.

Also by then I was down to below 5mg from 80mg.

I was never in the osteopenia range, but as on v. High doses for GCA and early hysterectomy aged 37 was in the “susceptible” bracket.

DEXA scan since finishing steroids was good, although it was suggested I stay on Calcium/VitD supplement (Adcal) which was happy to do.

Thank you, appreciate your helpful comments.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pr0jection

Just to say I had no adverse affects taking AA.

Does anyone know why the instructions say not to take with mineral water? Is there something specific the water shouldn’t contain - given that there’s such a variation in the chemical composition of bottled waters, and indeed tap waters?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to CricketMonkey

No idea sorry ..,..think you probably need a scientist for that!

PMRpro profile image
PMRproAmbassador in reply to CricketMonkey

It's been found that water with a mineral content changes the way it is absorbed - high calcium and magnesium content reduces the amount that is absorbed so it won't work as effectively to protect the bones. There will be some mineral waters with low calcium or magnesium that will be fine but they just give a blanket "no mineral water". It actually also applies to well water too. I grew up in a village with really hard water - no idea what effect that would have ...

CricketMonkey profile image
CricketMonkey in reply to PMRpro

Thanks for the reply. I do wish they’d explain these things so we can make informed choices.

I’d suspected it might be the calcium content that was a concern ... so when on holiday in Greece and advised against drinking tap water by the locals, I carefully read the analyses of all the bottled water brands to choose the lowest in calcium.

I’ve usually lived in hard water areas with chalk aquifers, and strongly suspect that the tap water would have contained more calcium than some of the bottled waters available.

PMRpro profile image
PMRproAmbassador in reply to CricketMonkey

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

goes into it further - and yes, our suspicions about some tap waters are correct! I live in the Dolomites - pretty high calcium here I imagine!

I imagine though that most doctors handing out AA and co are blissfully unaware ...

CricketMonkey profile image
CricketMonkey in reply to PMRpro

Interesting.

And a quick search of various water companies’ websites suggests that the Ca (and Mg where listed) concentrations are higher in tap water in the places where I (under normal circumstances) spend time (South Gloucestershire, Hampshire/Sussex and Suffolk), than in the bottled water I currently have in the fridge.

The Dolomites? Dolomite aka calcium magnesium carbonate ... yep, I would think quite high Ca and Mg.

PMRpro profile image
PMRproAmbassador in reply to CricketMonkey

Quite! Mind you, not sure anyone would want to take it with distilled water - although the use of a Brita filter seemed to do the job too. Brita filters on prescription maybe?

I would never take bisphosphonates but I stress this is my personal choice. I believe they can be more damaging than beneficial especially as I’ve experienced tummy issues such as gastritis with certain medication and believe by keeping to a healthy diet, exercise and calcium, I can manage bone issues without them. There is a view that they restrict the normal development of the bones and bone density can improve regardless of age. In fact a few years ago I managed to improve my bone density without them albeit I wasn’t taking pred at the time. I’ve now managed to taper completely off pred after almost 4 years, no omeprazole and only take thyroxine. Getting used to no pred was the hardest part and now after 4 months I’m feeling like my pre PMR self. Oh and I had a hip replacement last year too! Good luck with whatever you decide. It’s your body, your choice.

Pr0jection profile image
Pr0jection in reply to Casia

Thanks for replying Casia. I've more or less decided to let nature take it's course having done a bit more research. I have a history of gastritis which I've managed to overcome by taking probiotics and goat's kefir so I don't want to rock the boat.

I’ve taken aa for over two years without any issues. I take it first thing in the morning and then hop back into bed and sit up for 30 minutes.

I have been taking AA once a week ever since I started taking Pred, in July 2020. I take it with a glass of water as soon as I wake up, as instructed, wait half an hour, without lying down, and then have breakfast. It has gone fine with no side effects. As people say, the half hour passes quickly, there are loads of things you can do without lying down. I presume that instruction about not lying down is to avoid reflux and allow the AA to be absorbed. It seems to be an important part of countering the effects of Pred so if prescribed, you should definitely give it a go.

I take it - just wait 30 minutes for breakfast - no problems so far ( 2.5 years)

I didn't get on with any of the tablet form of bone protection and now have yearly infusion of Zoledronate. Have osteospirosis in spine with two wedge fractures T6 and T7. Had no side effects.

Hi, I found you question really interesting. I have exactly the same concerns as you. Being prescribed one medicine to counteract the side effects of the first. I too was concerned about the side effect of joint pain as my main symptom for which I was prescribed Prednisolone is joint pain. I have been trying really hard to improve my bone density which has been hard during lockdown. The things I have done are:Regular pilates - 4 hours per week

Regular walking and cycling

Weight training - eg an on-line body pump class. You can start with small weights or water bottles

Ca, Mg and Vitamin D supplements

Wearing less sun block and allowing my skin to be exposed to the sun as I think naturally produced Vitamin D is more effective than supplements. I used to wear factor 50 all the time.

I also wanted to know whether any of this had made a difference so I decided to pay for a DEXA scan as I don't think the NHS can justify them too regularly. It cost £195.

Anyway, I have recently had the scan and my bone density has improved. My fracture risk has decreased from 30% to 15% whist taking prednisolone during the whole period. As you can imagine, I was relieved. So I have decided to delay taking Alendronic acid and to keep up with all the actions above. I have suggested to my GP that we keep my bone density under review and now I know that I can get a DEXA scan quickly and easily (albeit at my own expense) I feel that I am more in control of my own health. I do agree with other comments that Osteoporosis is a very serious and painful condition but I think there is a balance to be achieved between the level of fracture risk and the side effects of the medicine. It needs to be your choice as to where that balance lies.

I had a horrible skin reaction to AA so that is out. I am very reluctant to try anything else but my rheumatologist is very keen. My Dexa scan is good but he says I need to prevent osteoporosis as I have been on prednisolone for 5 years and will develop it. It’s an obsession with him and he spends most of my visits talking about it, I don’t like going against his advice but I don’t think I can cope with another med at the moment. Thank you for the advice about supplements. If any of you are on HRT I would consider continuing to take them. I think they are the reason for my strong bones. I had no musculoskeletal problems before I came off them and that’s when the PMR started. Difficult decision for you. Best wishes

PMRpro profile image
PMRproAmbassador in reply to Nightingales

I've been on pred for nearly 12 years - hardly any change in bone density and nowehere near osteoporosis despite no AA. It isn't inevitable. I was on HRT for a long time - I'm sure that has helped. And my PMR started some months after stopping the HRT.

Nightingales profile image
Nightingales in reply to PMRpro

That’s very interesting. I really regret coming off HRT. I had a total hysterectomy but all the studies about the relationship with heart attacks were coming out so my GP persuaded me. It’s something that needs more research.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

It was just one more scare for me too and I thought it was time after 13 years. I really regret it - especially when that scare was shown not to be that bad in fact ...

Nightingales profile image
Nightingales in reply to PMRpro

I tried to persuade me GP to put me back on for bone health but by that time I had hypertension and she wouldn’t. My rheumatologist looked at me like I was crazy lol. Oh well, we live and learn.

I felt the same way when I was prescribed alemdronate a couple of years ago. I tried calcium and vitamin D for several months instead and finally gave in and began taking it a little over a year ago.I was really scared of the side effects and the dental stuff but I talked it over with my dentist and she told me many of her patients take it.

I am so used to it now I don't think too much about it. Just something I do every Friday.

You do what you have to do. Better that a broken hip.

I believe you can manage to preserve your bone density through other means than a medication you don't want to take. You could look at this to get some ideas about a way to move forward. I should say this does take time and some discipline, but to my mind a lot better than a questionable chemical. But that's just my opinion. I'm sure you'll make the right decision for you.

And you could consider a year of AA while you do the other things as well, which may well mean you can discontinue AA sooner rather than later.

healthunlocked.com/pmrgcauk...

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