Prolia discontinuation
Hi, due to an osteoporosis diagnosis, I took two injections of Prolia six months apart and due two side effects, I want to come off of it. I do not want to transition to a bisphosphonate or remain on one. How do I take myself off of Prolia safely? I am not getting a straight answer from my doctor.
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I am just wondering, did you find another option yet? I had 2 Prolia injections and stopped because of a rash that developed , grew and lingered. So now I am on Alendroniate (Fosamax)
and not liking it much. I am 71 y.o. and have similar concerns.
No, I have not found an alternative yet. I switched from nurse practitioner/bone specialist to an endocrinologist due to elevated parathyroid and calcium levels in my blood. The bone health specialist was going to switch me to HRT, Evista, to transition off Prolia, as its my only viable option due to the fact that I developed ONJ last year during an implant procedure which had to be reversed. I cannot take what you are taking because of that. Waiting to see if my osteoporosis is related to parathyroid tumors and once that's eliminated or confirmed, we can start to figure out what I can transition to in place of Prolia. But for now I am in limbo. I have been on Prolia almost 7 years and I believe I have other side effects from taking Prolia, including high blood pressure and high cholesterol and severe lower back aches, but I can't prove any of it conclusively. I want to get off Prolia but I don't know if and when I will be able to do that. In the meantime my tooth problem also is unresolved.
Gently, thank you very much. I try new " roads " for myself, I do not know really what to do
after second Reclast, thanks for word ( anaphylaxis, I will use it), may be this famous chiropractor, I have his book, but what can he help with my body, Thymols only, because after Evenity again must be Reclast or to try Atelvia, after breakfast. It needs to have very good endocrinologist with big experience, I am so sensitive to medicines. Calle Mayo clinic, I tried it many times without any success. Jacksonville, they do not take patients at all, lack of endocrinologists. Jacksonville , if you have troubles with stomach and so on, do not go there, I was, waste of time and money, for me it was experience of village hospital. They denied diagnose micro colitis, told that micro colitis could disappear by itself (it was TEST!!! colonoscope ) and wanted to do this test again, called several times to me after.
So I think what to do in future and read this forum and want to try another one, from EU.
whiteswan, I found this not so useful, but interesting for the instruction about anaphylaxis with Reclast. In case someone denies that it ever happens with Reclast.
It isn't easy to find good care, but there are amazing mds out there. I hope you find them.
I was on it for two years before stopping Prolia. After the gap, I have been on it for five years with very good results. How long should I be on it? No one seems to know. I'm going to consult with a new doctor who specializes in osteoporosis and see if I can get some answers.
“A doctor who specializes in osteoporosis”, I can’t find such a thing. I can’t find an endocrinologist who specializes in osteoporosis taking new patients. Very disheartening to me.
I hope it is a big help to you.
Depending on where you live, you might have better luck with a larger facility (hospital, large medical center) that advertises that they treat osteoporosis. You know - they might have a Web page like "Endocrinology: Osteoporosis program" or some such thing.
I don't know where you live, but here's a link to Johns Hopkins in Maryland. https://www.hopkinsmedicine.org/metabolic-bone-center/treatment-options
You may also want to look at the Menopause Society website to find a doctor who has certification to work with menopausal women. Some treat osteoporosis. Here's the link: https://portal.menopause.org/NAMS/NAMS/Directory/Menopause-Practitioner.aspx
Finding new doctors is a challenge. I found an endocronologist who has a special interest in osteoporosis, but I couldn't get an appointment until 9 months from now.
As I've said before (and will countless times over and over again), women's health is not a priority in the USA. And, we all suffer for it.
Another very good resource is The Bone Health and Osteoporosis Foundation. You can identify doctors on their website.
https://www.bonehealthandosteoporosis.org/about-us/
I recently hear a talk that the doctor said 3-5 years max