Advice on taking bisphosphonates

[anniemb]

I am looking for a bit of advice on whether I should go along with the rheumy's suggestion that I start taking bisphosphonates.

I am 57 and was diagnosed with GSA in early March at which point I was started on 60mgs of pred. I am now down to 30mg -tapering every 4weeks. I have today received a copy of a letter sent to my gp regarding my recent bone scan and it has been suggested that as I am just within the osteopenia category I should be started on treatment immediately. My T scores are -femoral neck -2.3 , total hip -1.0 and spinal L1 to L4 0. Perhaps I should also mention that I have had RA since a child and have one hip replacement and will at some point in the near future need the other hip replacing. I am assuming that this must have some effect on the scan results.

I am loathe to start on AA unless it's really necessary so would love some wise words so that I can make an informed decision.

[Celtic PMRGCAuk volunteer]

Annie it's a very personal, and somewhat difficult decision as to whether to take bisphosphonates when you are only just into the osteopenia range.

I presume you are already taking a calcium plus Vit D supplement?

After a steroid starting dose of 40mgs, I moved just into the osteopenia range with regard to my spinal reading but no-one suggested bisphosphonates at the time. Also, due to a misunderstanding between my GP and my rheumy, I wasn't prescribed the recommended calcium plus Vit D supplement either.

Luckily, my bones remained intact throughout! In fact, the repeat DEXA some time after coming off steroids showed an actual improvement. I did include plenty of calcium in my diet by way of daily 'live' yoghurt, milk and oily fish (the latter is excellent for our bones). I also walked daily, initially just as far as my pain allowed, and I joined a Tai Chi class and latterly a Nordic walking group.

To help you decide which route to take, why not contact the National Osteoporosis Society for advice? I found them very helpful.

[anniemb in reply to Celtic]

Hi Celtic ! Thank you for your response. Yes, I have been prescribed Ad-Cal since I was first started on the pred. My rheumy also wanted me to start AA at the same time but I said no. I still think that it's too early to start AA but wanted other people's thoughts and experiences with this.

I'm not a great lover of dairy but have started to incorporate live yoghurt and cheese into my daily diet plus ,only yesterday, I looked into joining a Pilates and tai-chi class.

Thanks for the suggestion to contact the National Osteoporosis Society. I will definitely do that.

[christine2715 in reply to anniemb]

I was diagnosed three weeks ago an am taking AA once a week. I don't seem to have any problems taking it.

[HeronNS]

From the reading I've done, and experience of a couple of friends, there's no need to take medication for low bone mass, probably not even for osteoporosis. It's quite hard work in terms of making sure you get all the right nutrients for bone health - goes way beyond calcium, D3 and glasses of milk - and also doing as much appropriate exercise as you can manage. But the results should be worth it. Here's an article you may find interesting:

researchgate.net/publicatio...

It was a study done to find out if non-pharmaceutical methods can in fact reverse bone thinning, and the study shows pretty definitively that they can!

If I felt compelled to use a medical treatment for low bone mass, I would only consider strontium citrate, and never any of the patented medicines. But, as has already been stated, this is a very personal decision. Best wishes!

[SusanEleven in reply to HeronNS]

Thank you for the article link. I'd much rather explore that direction. My Rheumy and my endocrinologist want me to start on bisphosphonates but I asked for a new bone scan first, which is scheduled tomorrow. About 15 years ago I suffered a compression fracture of my T-10 vertebra after a rather dramatic fall. Bone scan results were osteopenia. Endo insisted I start bisphosphonates then and I refused. I did some research and asked her to instead check my Vitamin D levels. Turns out I had a severe deficiency. I take 4000 IU of Vit D daily, year round, to keep my levels in the normal range. (The endo checks levels 2x a year). My bones improved with the Vit D and bisphosphonates were never mentioned again. Here's hoping the new bone scan results are ok.

[HeronNS in reply to SusanEleven]

That's really interesting about the Vitamin D! Hopefully you'll find that simply tweaking your supplements will help as much this time. I've added Vitamin K2 as that, like D, is hard to get.

[anniemb]

Hi Heron.

Thanks for the link to the article. Makes interesting reading. Think I have already made my mind up not to start bisphosphonates at present and instead try to look at other options through supplements, diet and exercise. Again, many thanks.

[PMRpro Ambassador]

If you have already had a hip replacement and are likely to need the other done I'd suggest speaking to your orthopaedic specialist - the femoral neck reading is low, almost osteoporosis, and that is also the big risk area really. However, if it is about to be replaced there doesn't seem a lot of point starting on bisphosphonates since the other readings are fine as far as I can see. The only person who will be able to give a sensible and unbiased opinion is the potential hip surgeon.

[anniemb]

Hi PMRpro !

Those were my thoughts too ! My remaining hip is in extremely bad shape and my ortho surgeon has left it up to me to say when I need to have it replaced. I am not due to see him for some time but I do have a contact number for whenever I need to speak to someone , so I think I will give them a call.

Sadly don't have much faith in my rheumy and have already had several heated discussions about my treatment so your wise words are invaluable.