Medication

[mully]

Hi I've just been told after a Dexa scan that I have osteoporosis and that I will need treatment I'm not sure how bad it is as I am waiting for an appointment with the rheumatologist who ordered the scan My first and only symptom is a fracture in the sacroiliac joint I'm worried about being prescribed bisphosphonates ( sorry if Ive spelled that incorrectly) I have painful gastritis so don't think I could tolerate an oral tablet Nor would I want an infusion as I would like the opportunity to stop taking something if the side effects were intolerable I believe there is a daily injection Is anyone taking this and how are the side effect Do you actually get a choice as to which medication you take? I know I'm probably thinking about it too much when I don't even know the extent of osteoporosis which I know would influence which drug I would be offered but I thought I would like to go into the appointment at least thinking about the drugs I wouldn't want to take Thank you so much for taking the time to read my post any advice would be gratefully appreciated

[Met00]

In the UK doctors seem to be expected to prescribe Alendronic Acid first and then, if that causes problems, try risedronate, before being referred for an infusion. As far as I'm aware, you'd only qualify for something like the teriparatide daily injections if you have severe osteoporosis, and usually if you've continued to fracture despite trying one of the other medications. Please be aware that if you're offered Prolia, that if/when you stop taking it you have go straight onto a relay drug, almost always a bisphosphonate, to reduce the risk of spinal fractures that can otherwise occur within months and up to the first couple of years of stopping taking it, so you'd need to know you can tolerate a bisphosphonate before starting on a course of Prolia.

[MWZ3]

I’d take nothing without knowing my tscores and doing all I could to help naturally. Also, what is the cause and can that be addressed. Are you already taking vitamin K2, for example. Have your vitamin D levels been checked? Are your blood tests showing any low levels or other issues? Have you read through peoples’ comments where they have improved their tscores with diet and exercise? There are lots of ways to help your bones before accepting drugs that can be counterproductive.

[CloudyD]

Hi. Depends on your scores but I would have thought that if you've already had a fracture, and one that sounds like it's in an important area, you're better off taking the medicine. I too have stomach and oesophagus problems which is perhaps why I was first put on Risedronate and not AA. I take according to instructions and have had no gastric problems with the medicine. Everyone's different, so doesn't mean you won't have problems with it, but as I understand it Risedronate is milder on the stomach than AA - obviously check that with your specialist. I continue with natural methods too. Just make sure you have regular check ups and full review after 5 years when one should be able to take a medication holiday. I haven't been advised any injections/infusions yet so can't comment on those.

[Cappuccinobaby]

Get your GP to rule out primary hyperparathyroidism as a cause of your osteoporosis x

[Nuthatch]

I have severe osteoporosis (5 compression fractures at diagnosis due to GP being hopeless and apparently knowing nothing about OP). I persuaded the consultant rheumatologist to prescribe teriparatide, which is the daily injection. I had the full 2 years but absolutely no follow up due to lockdown/covid. I’m now on Raloxifene. I won’t take a bisphosphonate. I don’t think you’d be offered teriparatide unless your T scores are bad but of course it is absolutely your choice which medication to have out of what you are offered, or none at all. The ROS has really good resources (very much on the standard medical advice spectrum) and the helpline is also very good. Once you know your T scores you will be in a much better position to make decisions. Try to research as many options as possible and take your time, there is no need to be bounced into making a decision straight away. In the NHS as it is now, cost is a major consideration so we all need to learn to advocate for ourselves as much as we can. My husband is still waiting for a diagnosis and treatment for some inflammatory condition which has been affecting him really badly for nearly 2 years but he won’t push or nag - he thinks I’m much too arsey but I’m the one that gets results!

[hjskev]

Beware of Alendronic acid. I blame it for my stomach issues ie acid reflux.

[Raleigh59]

I have the same exact situation as you do. However, my insurance insists I go through the steps and try each next step. I started with fosamax and I only allowed a one week supply . It’s taking me a long time to get through because I am only taking 5 mgs per day when I can. Still I am doing the process as my insurance insists I do.

I now work out at the gym 45 minutes every day which I am surprised at but I started with 5 repetitions on a back extension machine and 5 minutes on the elliptical two months months ago . I lift 5-35 lbs depending on the machine and do 30 minutes on the elliptical. It’s actually a miracle how far I’ve come in two months.

[Fran57]

Hello and welcome.

Please do ask your GP for a simple blood test to rule out hyperparathyroidism…. ( nothing at all to do with your thyroid). My GP had never heard of it, until I told her, and was thankful I had researched it in connection with my osteoporosis.

Good luck,

Fran 😉

[Raleigh59 in reply to Fran57]

I asked my Endocrinologist to do that and it’s normal

[mully]

Thank you so much for your replies a lot to think about but glad I won't be pushed into having something I don't want

[Raleigh59]

my endocrinologist told me half the patients want medicine and half don’t