Osteoporosis AND Bone Marrow Disorders

Posted by njhornung @normahorn, Mar 16 6:08pm

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.

windyshores | @windyshores | 1 day ago
It helped me to read the actual studies. Cardiovascular effects were the same in a study comparing Evenity to placebo. They were slightly worse with Evenity than alendronate but the report hypothesized that that could be because alendronate is slightly protective.

Evenity inhibits sclerostin and sclerostin has effects throughout the body, including blood vessels. I have read that more studies are needed on other aspects of sclerostin function that might be affected and there was too much focus on cardiovascular effects. I am more concerned about other effects, such as a possible reduction in acquired immunity (B cells produced in bone marrow). Not much is known as yet.

Most people seems to be doing fine on Evenity and it seems as if post- FDA approval reporting is not revealing a lot of new problems. (I am one of the few I know who is actually having side effects...)


Note the exclusion criteria in the second link.

awfultruth | @awfultruth | 3 days ago
In reply to @mayblin "windyshores if you see clinical trial results come out for short courses of evenity between other..." + (show)
Mayblin here is a clinical trial that is looking at shorter courses of Evenity. It appears to have started in late 2023. The results won't be in until 2026 unfortunately (if it stays on schedule).

"The study will investigate if it is possible to maximize the effect of romosozumab by giving it in 2 periods of 6 months interrupted by zoledronate for 12 months compared to romosozumab for 12 months uninterrupted followed by zoledronate for 12 months. The investigators will also evaluate if 6 months of romosozumab followed by 18 months of zoledronate is non-inferior to the standard regimen of romosozumab for 12 months followed by zoledronate for 12 months."

Links (both are about the same study):


Someone posted that study in another thread and I printed it out. I have basically asked my docs if I could do 3-6 months Evenity and then Reclast since the latter half of Evenity is anti-resorptive. One doc was supportive ( said I was creating my own protocol and she was curious what results were). I see my main doc this week. I will report back on what he says. I am quite sure though that if I weren't having side effects with Evenity, they would be urging me to continue due to that study not yet being finished! Sometimes having side effects gives me more freedom to do unusual things (like starting Tymlos at low dose)!!!! The protocol of Evenity for 3-6 months might eventually be available to all.

One person posted on this forum that they had a 7% gain in just two months. Dr. Ben Leder's video shows an abrupt large rise in P1NP in the first WEEKS of Evenity. So even if we have trouble tolerating it, perhaps it is worthwhile to do as much as we can. I have made it through three months though the last two were one shot, not two 🙂 Gain in one study for the reduced dose was 10% vs 16% but still a positive.

Most people seem to do fine with Evenity so no need to even think about any of this! Anecdotally it seems Evenity has the fewest side effects for most people. Still, since osteoporosis treatment extends over years, and each med has a time limit, the idea of doing short bursts of Evenity between other drugs sounds very very helpful.


I've been searching for days on contraindications for osteoanabolics for CLL diagnosed patients. Was trying to make sense of this article and it's truly way over my head. I know Dr McCormick covers much of this very technical info also in chapter 6. Just trying to read and understand.

This is an AI produced answer to my question, " Contraindications for CLL patients considering osteoanabolics.


WindyShores posted this on another thread, but I noticed our cll could be a secondary cause of osteoporosis.
windyshores | @windyshores | 1 hour ago
@babs10 https://www.healthline.com/health/managing-osteoporosis/secondary-osteoporosis#causes

What causes secondary osteoporosis?
Secondary osteoporosis may be caused by certain health conditions, drugs, or lifestyle factors. Common causes include health issues such as:

chronic kidney disease
celiac disease
chronic liver diseaseTrusted Source
inflammatory bowel disease
eating disorders
bone-marrow-related disorders
gastrointestinal disorders
organ transplantation


"Bone skeletal alterations are no longer considered a rare event in chronic lymphocytic leukemia (CLL), especially at more advanced stages of the disease."


So few doctors specialize and sometimes we get conflicting info. When a drug comp excludes a certain category my antenna goes up😉. Thank you all so much for posting what you've uncovered.

I was hoping to start tymlos in April, now it's on hold for a bit.


Any ramifications might be so minimal that they would not be of concern. However, ferreting out hard information on the subject is way too difficult.


I have seen studies investigating the effect of Evenity on bone marrow (edema) and B cell production which I believe have not been concluded as yet.


I'm still searching for answers & now feel I cannot just dive into any of these drugs without help having CLL. Physicians are difficult ...quick to answer, brush off concerns, have no evidence to say some of the things they claim, I wish it weren't so! We're left trying to figure it out.

I'm so confused and worried. Last oncologist, "no relation btwn the two" (CLL & Osteo) "no issue taking osteodrugs!" So as uneducated as I am on these complicated topics, I am trying to ferret out answers for my own safety. Shouldn't be this way!

I'd like to ask @gently if you can explain in layman's terms or have any insight to share on this topic of CLL & osteodrugs?

I will be heading to moffit April 12th for a thouough exam, but I'm truly losing faith in the medical profession & their lack of understanding this complicated disorder.

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