Advice on biphosphonates please

[Humphreydonk]

Would welcome some comments/advice from anyone with experience of biphosphonates. I've had my Dexa results - have mixed T score results. Spine is the worst one. T score was -2.2, but Z score was -0.3 . Am on tapering Prednisolone currently 8.5 and am on weekly MTX injections , currently week 8. Also on Hydroxychloroquine. I am not that keen on taking biphosphonates !

[springcross]

Hi Humphreydonk. This is the NRAS forum - did you intend to post in the PMRGCAuk forum as I see that's where you normally post? The Bone Health forum also could help with bisphosphonates. 😊

[Humphreydonk in reply to springcross]

Thanks. I was unsure where to post as my initial diagnosis of PMR was queried by my rheumatologist after 8 months ! She said it was progression of my RA. However as I was put on prednisolone for the PMR in January by my GP and have been tapering on it since, I'm now dealing with that. I will copy post to PMRGCAuk and Bone Health forum.

[springcross in reply to Humphreydonk]

Sorry Humphrey, saw bisphosphonates and didn't read any further! 🤔🙃

[GinnyE]

I am on 20 mg methotrexate for RA. I had diagnosis of osteoporosis four years ago and take alendronic acid once a week tablet for it. It's supposed to stop your bones crumbling so I take it although there's the usual worry about side effects, mostly teeth you have to watch. But on balance I take it. I think I'll have to stop next year as I think its five years. I understand your reluctance; yet another medication to think about but I guess it's to help old bones!

[Humphreydonk in reply to GinnyE]

Many Thanks, Ginny. Yes, I was told about dental problems/risks. Have you ever had problems with gastritis from alendronic acid ?

[GinnyE in reply to Humphreydonk]

No don't think so, but I am careful to always take my tablet first thing, glass of water and keep upright for half an hour and then have breakfast. Makes sure it goes down properly and dissolves in stomach I think.

[oldtimer]

I took alendronate for five years, then stopped. It was prescribed because of taking steroids, but I don't actually have any problem with osteoporosis fortunately. I was careful to take it as prescribed first thing in the morning and stay upright afterwards. It didn't seem to give me any particular problems (unlike almost everything else!) but I remember the dentist being very worried about at the time as there had been reports of jaw necrosis...!Now I do try and take weight bearing exercise, although that's not easy these days -I mainly exercise in the pool and do yoga now as I can't walk far.

[Humphreydonk]

Many thanks for reply. Yes, the stay upright advice was mentioned by GP and the dentist problems. I was advised that weight bearing exercises do not include cycling, swimming but was recommended walking.

[springcross in reply to Humphreydonk]

I was on intravenous bisphosphonates (every three months) for eight years Humphrey and I was told by my consultant prior to starting that if any dental work needed doing to get it done prior to my first infusion.

[Snackjack]

I have Osteoporosis and many other health issues, which did mean that I was limited as to what I could have for the Osteoporosis. I decided to do my own research on Bisphosphonates and didn't like what I found so I made the decision to refuse them. We are all different with other health issues so if I were you I would do some research before you decide.

[Humphreydonk in reply to Snackjack]

Thanks Snackjack. Wise advice ! I'm undecided but it's sometimes hard to resist the medical profession especially when so many medications have awful side effects or lead to even worse outcomes down the road.

[Lolabridge]

I have Osteoporosis as I was on Prednisolone for 3 years for RA. I take a weekly alendronic acid pill and calceo chews as recommended by my rheumatologist.

[Biofreak]

I also have osteoporosis and was diagnosed in 1997. I also have rheumatoid arthritis diagnosed in 2005. I take 1 alendronic acid tablet weekly and adcal D3 chews twice daily. I have had no fractures. It's important to take the alendronic acid on an empty stomach with a full glass of water and remain upright. This is to avoid feeling sick. Also wait for at least 1/2 an hour before eating. I have had no problems/ side effects. I used to do a lot of walking but not a great deal these days. It's an individual choice and no doubt if I had any significant side effects my choice may have been different. Back in 1997 it was the only preventative medication to delay deterioration (I was told) alongside weight bearing exercise. At the time of diagnosis I was only about 40/41 and did a lot of walking back then but that hadn't stopped me having osteoporosis which I think was more due to early menopause.

[Fruitandnutcase]

I’ve just looked up T scores and found this

‘As shown in the table below, a T-score between +1 and −1 is considered normal or healthy. A T-score between −1 and −2.5 indicates that you have low bone mass, although not low enough to be diagnosed with osteoporosis. A T-score of −2.5 or lower indicates that you have osteoporosis.’

If your worst figure is -2.2 then it looks as if you are still in osteopenia rather than full blown osteoporosis. Could you work on or even try weight bearing exercise and a bone friendly diet?

I can see why you have been offered bisphosphonates though - rheumatic disease is a marker for osteoporosis as is the use of steroids, coeliac disease, low levels of calcium, low vitamin D, taking PPIs, overactive thyroid to name but a few.

I took alendronic acid for four months and felt really ill, think the only problem I didn’t have was the gastric problems I was half expecting. In the end I stopped, possibly not a sensible choice but I made that decision. Do as much research as you can. Look on Bone Health on this site you’ll find a lot of information / opinions on there and also look on the Royal Osteoporosis Society website for information. Good luck with it all.

[AgedCrone]

I resisted taking Biophosphonates for ages… my Dexa scan scores were good for my age, but my rheumatologist recommended I took them ….just for 5 years…..but I didn’t want to take any more meds…….then I had a crashing fall & fractured two vertebrae……which was really painful & still is two years on. The orthopaedic surgeon I saw after that fall was not keen on them tbh, but I did take my rheumy’s advice & I am now taking them with none of the nasty much publicised s nasty side effects.

But tbh I don’t think if I had taken them earlier it would have prevented the fractures…….I fell because of someone else’s carelessness not because I’m old……but maybe they will help if I should fall again- but who knows?

[StormySeas]

I have osteopenia and took bisphosphonates for a while, but after requiring dental work I did more research into them and decided to stop. I take three specific supplements - as does my GP, after reading the same data.

I’m not sure if I’ve had a DEXA since - I’ll check and report back. I’m not recommending you don’t take them, bone health is clearly important.

[bienassis]

You don't say how old you are but, in any case, the prednisolone does cause over time trouble with the bones.

I had a Dexa scan at age 60 but had no experience of prednisolone - and the results of the scan prompted my GP to prescribe biphosphonates. This was mainly a result of the menopause. I took them for about 12 years!

I don't think they would be prescribed for such a longtime in one go today - the thinking has changed (I am 86 years old).

Anyway, my bones are fine now - but having built them up with that long stint, the results do remain on the whole with age as the loss of bone density occurs mainly immediately after the menopause. But, of course, if you continue to take prednisolone the trouble could continue.

That's my experience, but other people's may differ.

Good Luck!

[SueBaker]

Bisphosphonates build bone, many people experience bone loss : you ever seen a little lady with a humped back? That's caused by bone lost and her spine has compressed. Please trust your specialist. I have no side effects with a bisphosphonate