Osteoporosis

[Avon14]

Good morning,

I’ve now received a diagnosis of osteoporosis in my hips and spine following a DEXA scan 6 weeks ago. I have GCA diagnosed in April 2021 and have been reducing prednisolone from 60mg to currently 6mg. My rheumatologist wants me to take alendronic acid which I’m worried about. I wonder if anyone could help with a couple of questions: do I take this before or after lansoprazole in the morning and should I delay some dental work (crown and filling), also what to expect?

I’m finding it particularly difficult to contact rheumatology or to get a GP appointment, I do absolutely understand that they are incredibly busy but do feel so isolated as I’m sure many people in our situation are.

Any guidance would be much appreciated.

[DorsetLady PMRGCAuk volunteer]

Do you know what your reading are ..just for interest.

IF you really need AA, it has to be taken first thing in the morning with large glass of water, and other medication 30mins after, so you need to choose a day when you have time!

Best to get dental work done before you start taking, especially if it’s anything major.

I took AA for 4 years with no issues, but it doesn’t suit everybody, so just make sure it is really required. Are you taking a VitD/calcium supplement?

[Avon14 in reply to DorsetLady]

Thank you for your prompt response. I don’t know the readings yet but will let you know as soon as I see them. I will choose a day, probably Sunday and take AA first thing, then 30 mins later have the lansoprazole, then 30mins later have breakfast, then prednisolone. At least it’s just once a week. I also take 1000iu vitamin D.

I need to have a crown and a filing but not sure when I’ll get an appointment.

Good to hear that you had no issues with AA. The consultant did say if it didn’t suit me there are various alternatives.

Thanks again.

[MrsNails]

Hi Avon - you need to have your dental work done first before you start taking the AA

Also it has to be taken on an empty stomach & you can’t have anything else to drink or 30mins. It also recommends you stand or sit upright.

I’ll add you a link from FAQ’s on Bone Health.

healthunlocked.com/pmrgcauk...

Good Luck 🍀

MrsN

[Avon14 in reply to MrsNails]

Brilliant. Thank you, so very helpful, I will read today.

[Kendrew]

Hi Avon14,

As already stated...must be taken first thing in morning on an empty stomach and at least 30mins before food or other meds. You are also advised not to lie down but stay upright as the medication can irritate the oesaphageal lining if it isn't flushed down into stomach properly...lying down can cause it to 'linger' too long in oesophagus.... hence take it with a plentiful amount of water.

I've been on it for almost 3yrs now and have had no issues so far with it. I do make sure that I take it exactly as instructed though.

[Avon14 in reply to Kendrew]

Thank you. Glad to hear that you’ve not had any issues. I will follow instructions exactly.

[jinasc]

theros.org.uk

Royal Osteoporosis Society - Osteoporosis Charity UK We're here for you Our team of nurses can answer your questions about osteoporosis and coronavirus, including treatments and the vaccine.

This link takes you direct to all the relevant information.

theros.org.uk/information-a...

[Avon14 in reply to jinasc]

Thank you. Very helpful to know of this organisation. Such a shame the rheumatology team don’t pass on information like this.

[PMRpro Ambassador]

It is advised that any potentially invasive dental work is done BEFORE starting AA. It is only one day a week even with the tablets. There are other options if you have severe gastric problems - or is your lansoprozole purely prophylactic because of the high dose of pred?

Have you been given the actual results of your dexascan? I fear I am very sceptical unless I have seen the actual numbers!

Since you are now down to 6mg it is a slight case of shutting the stable door - you don't know if it is the pred or if you already had low bone density pre-pred which is always a possibility. Though if you do already have osteoporosis I do understand why the rheumy is no pushing bisphosphonates.

[Avon14 in reply to PMRpro]

Thanks for prompt response. I just need a filing and a crown so not too invasive I think but not sure how long it will take to get an appointment.

The lansoprazole was to protect against the prednisolone as I already had a sensitive stomach and GI issues, also pancreatitis 18 months ago.

I don’t know the exact results of the DEXA scan but will hopefully have access to them soon.

I plan to start AA on Sunday but may wait to see results of DEXA scan and when my dental appointment might be?

Thanks again.

[PMRpro Ambassador in reply to Avon14]

If you have ANY problems with swallowing or digestion then AA tablets are contraindicated. There are infusions which don't have those problems and are only once a year - saves a lot of hassle!

[Avon14 in reply to PMRpro]

Oh that’s interesting, shame consultant didn’t offer the infusion instead of encouraging me to try AA first. I will have a think.

[PMRpro Ambassador in reply to Avon14]

They cost more!!!!!!!

[Avon14 in reply to Avon14]

I did think that might be the case. Should I push for infusion?

[PMRpro Ambassador in reply to Avon14]

If you have gastric problems - yes,

[Avon14 in reply to PMRpro]

Thank you.

[Sharitone in reply to Avon14]

Hi Avon! I had AA for a year, then the GP decided it could be causing some of the indigestion, so I was put on to twice-yearly injections of Denosumab instead. It means that eventually I'll have to go back to something like AA for a while, but in the meantime, it is quite a lot more convenient. So if AA doesn't work for you, don't be backward in coming forward!

[Avon14 in reply to Sharitone]

Thank you, that’s really helpful.

[HappyDiamonds in reply to Avon14]

I am in a very similar situation, diagnosed with GCA May 2020. Recently diagnosed with osteoporosis following spinal fractures even though I had a good dexa scan when I started Pred. Because of oesophagus problems I didn't take AA but was offered an infusion of Zolendronic Acid which I refused as the initial scan was good. But after the fractures I had an infusion and so wish I hadn't worried about it in the first instance. Everything was fine except for a slight temperature the next day and some acid reflux. Was told full benefit would be in 6 months and a further infusion would be done in 18 months. Im sure you would not be able to take the tablets. The other thing I was told was it was mainly dental extractions that is of concern. Good luck and I hope this has helped you. Are you cared for by Bristol Hospital Avon?

[Avon14 in reply to HappyDiamonds]

Sorry to hear about your fractures, glad the infusion was okay. I’m going have a good think about how I go forward now. No I’m not in Bristol area, I’m in Buckinghamshire, Avon is anagram.

Thanks for you help, so good to know there are always people on here that are so supportive.

[Thelmarina]

I too had the reservations about bisphosphonates, however went ahead. I take a monthly dose of Ibandronic acid rather than the weekly alendronic acid. I sit up for an hour doing a crossword and it’s recommended to take other medications an hour later. Just so you know about choice! 😀

[Thelmarina]

I mean medications one hour after the Ibandronic acid not two!

[Avon14 in reply to Thelmarina]

Thank you. There seems to be quite a choice of meds to do the job. I think for me it’s just the unknown. So grateful for the input on this forum, so informative and helpful.