Do you have osteoporosis? What are they treating you with and how is it affecting your PSC?

General
1

They’ve prescribed me bisphosphonates, but I understand there are alternatives and I’ve not seen any mention of them on here. Is there a preferable alternative?

Many thanks,

James

2

My mom has prolia ejection every 6 month. It seems to work but I don’t know how it effects her liver.

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3

Thanks Luba, yes I’ve been looking it up and it does seem like possibly the medication with the least side effects, I will mention this to my specialist.

4

I take vitamin D and calcium.

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5

Thanks Jeff, are you far into osteoporosis or still in osteopenia? I’m a -2.6 in the lumbar spine with a normal hip. Interestingly my z score (for actual age) and t score (compared to a healthy 30 yr old) are identical, which seems weird, as I’m 40.

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James, you’re only supposed to be on that category of meds for 10 years TOTAL in your LIFETIME. By your picture I would say you’re very young to be on them.

Have you tried other things? Calcium supplements? Vitamin D? Diet changes to up bone mass?

And keep in mind, those meds build calcium EVERYWHERE in your body, not just your bones. There is some concern they harden you brain, too. Do your research.

azurelle

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I was diagnosed with osteoporosis of the lower lumbar when I was 31 with a z score of -2.6. I wasn’t prescribed anything fancy and I’ve been on vit D and calcium supplements for 6 years. My score has improved only marginally (-2.5), probably because everyone else is catching up. This is despite having normal levels of vit D, quiescent PSC, no IBD, and no steroid use.

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Thanks ModSupport and jtb. Yes I’m not keen on the idea, I will discuss with specialist on Monday which is why I need to know all the alternatives as I’d imagine it’s going to be an argument. I’ve started exercise again and have no issues with taking high level vitamins and minerals. I feel like I want to say ‘give me a year and re-scan, if it’s worse I’ll reconsider.’ Good to hear you seem to have stopped the progression at least, jtb.

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James.
From my bone scans the last two years, I lost 3% each year, so osteopenia.

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Good to hear it’s not so severe yet and they’re onto it.