Osteoporosis AND Bone Marrow Disorders
I will admit that I am probably overconcerned about nothing but information on the subject seems to be scarce. Hopefully this forum will serve as a central pace to gather information confirming or refuting any concerns,
I have CLL, chronic lymphocytic leukemia, at stage 0. I hope to never leave that level and do not want any osteoporosis treatment to kick me up or increase my risk of secondary infections. The anabolic treatments might do one or the other.
If, and I stress if, sclerostin depletion lowers our immunity, that could be serious for a leukemia patient. There was a report of a new cyclic study the other day that indicated a person with a bone marrow disorder might be excluded from participation. That makes me wonder what they know that I do not but maybe should
I would like to gather in one place a list of references that we can share with our oncologists for their input. Anyone who comes across a study pertinent to this discussion is welcome to share that.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
This is not a study but a recommendation from Johns Hopkins. I would imagine this would apply to Tymlos as well.
Our choices are limited.
______________
Persons with elevated calcium levels, women who are pregnant or nursing, or persons who have ever been diagnosed with bone cancer or other cancers that have spread to the bones, should not use Forteo®. Because long-term treatment effects are not known at this time, therapy for more than two years is not recommended.
https://www.hopkinsarthritis.org › ...
Forteo Information : Teriparatide - Johns Hopkins Arthritis Center
I started on Evenity for severe osteoporosis in early October, 2024. By Christmas my white blood count was only 2. In early March I was diagnosed with AML ( Acute Myeloid Leukemia). I think it's likely that the Evenity triggered the leukemia, though my endocrinologist and hematologist both pooh-pooh that notion. If Evenity affects bone marrow it seems likely to me. I am extremely drug-sensitive and was very hesitant to take Evenity but was talked into it by an endocrinologist who assured me all would be well. Needless to say, I stopped taking the Evenity and will not be taking any more osteoporosis drugs.
Hello @normahorn
I just saw this post. At 59 I too have CLL and Osteoporosis.
Just wondering if you decided to start any treatments for Osteoporosis and how your CLL is doing?
I would prefer to discuss privately but you don’t have your account set to accept ?
I am so sorry that happened to you. I also have "crappy bone marrow" and lukopenia. I was told I have chronic anemia. I did 24 months of Forteo with no change to my blood work, which is monitored every 3 months. I have not fractured since the Forteo and actually starting another course of it now 8 years later. Maybe that could also work for you? I use Raloxifene as maintenance drug in between, also with no side effects. Depending on your bone density and fracture risk, you certainly don't want to give up as fractures are incredibly disabling. I am glad not to take Evenity from what I have read, plus my insurance would not cover it. I wish you all the best : ).
I have been on Prolia for almost 20 years. So far so good. I see my endocrinologist twice a year, with blood work before each visit. My blood work and dexascan are both good. This is only my experience. I have experienced dizziness since 2015, which has recently turned into vertigo. I’m not familiar with the drugs you mentioned, but would like to have a backup in case something does go wrong.