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.
Written by
peace_lover
To view profiles and participate in discussions please or .
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
belated phone call
Alendronic acid or not?
Friends Probable GCA
PMR - update on doctor call
