So I had my follow up phone call with my doc this morning to discuss my recent rheumy appointment. She agreed to give me a copy of his letter as I haven’t received it yet (and never received the last one despite asking). Result.
She also agreed that a slow taper would be more beneficial than a quick one and now have 1mg on repeat prescription. Result.
But, she wasn’t entirely happy about me not taking the Risedronate. We spoke about my Dexa scan that I had last October. I thought the result was OK. Or did I simply take her non commital hmm at the time of her looking for it last year as a yes? Who knows. It isn’t on the system. Or hasn’t come through to my doctors practice. So she is investigating. I told her my hesitation at taking something that would probably add to my already severe digestive problems (I have a liver disease that affects my bile ducts) so she said I could consider having a twice yearly injection instead.
Has anyone had this or have any thoughts/ info on whether this would be better? I want to be able to make a considered decision if the Dexa scan results are poor. Many thanks.
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peace_lover
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If she means denosumab/Prolia (that is the only one given 2x per year I think), recent work has shown that there is a rebound LOSS of bone density when the injections are stopped so either the injections must be continued for life (beyond the formerly recommended 2-3 years) or an alternative drug, usually an oral bisphosphonate, must be taken. So being put on Prolia is a life-time committment.
There is a case report in the medical literature linking severe hepatocytotoxicity to denosumab in a patient:
where they warn that since it cannot be discontinued quickly great care should be taken in using it in certain patients. If you already have liver disease I would have thought reticence in using it was called for.
I really think that discussion with your liver consultant is required. If he thinks it is OK in your case fair enough - but the problem with the injected bone protection drugs is that the half life is very long so the effect is present in the body for a long time.
Thank you for that, interesting reading which I have bookmarked to refer to again. I have Primary Biliary Cholangitis but haven’t seen a consultant in years. Got lost off the system...😡 however my GP has picked up the yearly liver function tests (I had one today).
It all depends on the actual result of the Dexa scan. And Pre head that I am I forgot to pick up the promised Rheumy’s letter.. back to the surgery soon.
I would be interested to hear if anyone else has had the injections. I don’t like the sound of them at all.
I know a couple of people who have had them and had no trouble at all. Not sure what they are doing now - the one had been on Prolia for a few years and would normally have stopped but they have come up with this problem of rebound loss of density.
I assumed it probably was PBC you had. If it were me I'd be a bit reluctant to go on Prolia - you can't just stop it. It may be rare - but when it is you it affects it is 100% isn't it!!
Yes, PBC is “uncommon” also but it’s all mine to me! 🙂 I am reluctant, we shall see what time brings. Thanks for the names, I’ve managed to find out more. There’s only so much you can cover in a 9.39 min phone conversation with the doc!
What hard choices they keep giving us regarding these meds. My bones weakened after taking pred. for 1 & 1/2 years. After research I decided, along with my gynecologist, to start estrogen to build bone. My rheumy. doesn't know yet (not looking forward to that appt)
she wants me on the twice yearly shot. I stopped the methotrexate, so I need to leave my pred at the 9 mg. for at least another month.
Thank you for your good wishes. I’ve only been on Pred for eight months but I suppose it all depends on the results of the Dexa scan. I shall chase it up next week if I don’t hear anything. It was only a suggestion from the GP so I can prevaricate for a while! Hard choices sometimes need time to be considered properly.
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