Diagnosed with osteoporosis after 9 y... - Advanced Prostate...

Advanced Prostate Cancer

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Diagnosed with osteoporosis after 9 years on warfarin

NewPotatoCaboose profile image

I was originally diagnosed with prostate cancer in 2018, but probably had it for 5 or more years before that. After an aortic valve replacement in 2013 with the On-X valve, I was prescribed warfarin. Studies link warfarin to osteoporosis, In Oct. 2021, I started on Orgovyx. I recently had a Vit. D serum test which found me at 31, on the low end of normal range. On 8/6, I had a COMPREHENSIVE METABOLIC PANEL that found my calcium at: Calcium at 8.8 mg/dL with Normal being 8.4 - 10.2 mg/dL. (See profile for full history)

Has anyone else had osteoporosis issues with Warfarin? I think the Orgovyx may have exacerbated this. I've reached out to my onco re: estradiol patches to try to stem the loss.

Any thoughts on how I might proceed in addressing the osteoporosis while remaining on warfarin and Orgovyx? Warfarin is the sole blood thinner allowed with replacement valves and the only one that causes osteoporosis. It is also linked to atherosclerosis. I'd love to get off of it, but there are no current options. The PROACT study is looking at alternatives.

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24 Replies
Tall_Allen profile image
Tall_Allen

Have you discussed alendronate?

NewPotatoCaboose profile image
NewPotatoCaboose in reply toTall_Allen

My onco is out of the office this week, but I've been researching alendronate and related drugs to see their side effects and if there's a conflict with Warfarin, and I expect to hear from him Monday or Tuesday. The potential side effects look kinda nasty. I'd hate be on another drug, but with the warfarin and ADT ganging up on me, I need to do something.

Tall_Allen profile image
Tall_Allen in reply toNewPotatoCaboose

It's milder than Prolia. Side effects are uncommon.

maley2711 profile image
maley2711 in reply toNewPotatoCaboose

Here is a study of Fosamax-related possible side effects..seems thorough, but light on side effect probabilities.....jaw problems seem to be one of the more common problems.Google might help you find better studies??

NewPotatoCaboose profile image
NewPotatoCaboose

Thanks! That is good to hear!

tango65 profile image
tango65

What were the T values in the DEXA scan?

NewPotatoCaboose profile image
NewPotatoCaboose

Findings:

Lumbar spine: Spinal degenerative changes are present which elevate the DXA-measured BMD. This is perhaps more pronounced at L4. As such, the L1-3 BMD is reported. This value is 0.978 g/sq cm corresponding to a T-score of -1.6.

Trabecular bone score: The L1-4 TBS is 1.231 consistent with partially degraded bone microarchitecture.

Proximal Femur: For diagnostic purposes, the lowest T-score at the femoral neck or total proximal femur is used. For monitoring purposes, the mean total proximal femur BMD in grams/cm2 is used when possible. The left femoral neck BMD is 0.694 g/sq cm corresponding to a T-score of -2.5.

Left distal forearm: The one third radius BMD is 1.006 g/sq cm corresponding to a T-score of +1.3.

Lateral Vertebral Fracture Assessment (VFA): The thoracolumbar spine from T8-L4 is adequately visualized for interpretation. No moderate or severe vertebral fractures are seen.

tango65 profile image
tango65

With a T value of of -2.5 you are borderline osteoporotic.

originalText

Consult about having denosumab or zoledronic acid which are effective in increasing the bone density.

NewPotatoCaboose profile image
NewPotatoCaboose in reply totango65

Thanks!

London441 profile image
London441

The femoral neck sometimes is the only place that measures low. Same for me but just barely osteoporotic. Admittedly your -2.5 requires intervention. How much do you exercise and what kind?

NewPotatoCaboose profile image
NewPotatoCaboose in reply toLondon441

Not enough currently due to a number of other factors involving an unrepaired ventral hernia that is pending repair and other preexisting issues. Currently on a weight restriction and can't carry bike down/up stairs. This year also have had a knee injury on my bad knee, bouts of gout, pinched nerves etc. I'm hoping to take delivery of a exercise bike next week to resume cycling.

London441 profile image
London441 in reply toNewPotatoCaboose

That’s a lot, sorry to hear. Get that bike in if you can at least. Great luck to you!

Grandpa4 profile image
Grandpa4

I think you should take alendronate. The main issues are that it can irritate the esophagus hence the need to take it standing up for 30 minutes, avascular necrosis of the jaw, and a mid femur fracture. The jaw issue rarely occurs spontaneously (only 1 in 50,000) but occurs after dental work especially tooth extraction (2%). It is not painful but dentists hate it. The femur fracture is less common. Then the hip fracture you are at risk for and is much easier to fix the the traumatic one. My father had prostate cancer treated with an orchiectomy and his him broke walking down the street. Hip fractures in the elderly are often fatal. Also if you are not weight lifting already you should start.

NewPotatoCaboose profile image
NewPotatoCaboose in reply toGrandpa4

I've been looking at those kinds of drugs. I have a great deal of postponed dental care that needs to be addressed that makes me think that might not be a good idea to risk jaw necrosis at this point. I'd been hoping to mov on that, but then my hernia became incarcerated a week ago. A doc was able to get it back in, but it was clear I need hernia repair asap.

Grandpa4 profile image
Grandpa4 in reply toNewPotatoCaboose

In general I would not consider your situation an emergency. Get the hernia repaired then do the dental work ASAP. Start weight lifting after recovering fully from the hernia. Then start. You can use estrogen to slow or stop the loss over the next 6 months but you are past the point where that is sufficient treatment.

E2-Guy profile image
E2-Guy

I have been applying 'Oestrogel' for over 4 years now as my only form of ADT which is keeping my PSA undetectable and zero loss of bone density. No hot flashes/flushes or other side effects...only some small boobs! I don't know how it will do while on Warfarin?

Transdermal E2 (tE2) gel
NewPotatoCaboose profile image
NewPotatoCaboose

I have brought estradiol up with my onco a few times and messaged him again about it after this report. I'd even be interested in it as an adjunct to the Orgovyx

dadzone43 profile image
dadzone43

mayoclinic.org/diseases-con... like you would not want to risk a stroke from your prosthetic valve in exchange for reversing osteoporosis.

E2-Guy profile image
E2-Guy in reply todadzone43

Are you referring to CV issues related to the use of estradiol? If so, that 'was' somewhat of a problem with oral estrogens (DES) which passed through the liver. Transdermal estradiol (tE2) unlike the old DES avoids the first pass hepatic metabolism by entering the blood directly through the skin.

dadzone43 profile image
dadzone43

No. I was referring to why people with prosthetic heart valves are placed on anticoagulants like warfarin.

NewPotatoCaboose profile image
NewPotatoCaboose in reply todadzone43

Unfortunately, Warfarin is the only blood thinner approved for my specific On-X aortic replacement heart valve. I got a pig valve in 1997 to avoid warfarin, but they are only good for around 15 years tops in most cases, which is about how long it lasted. I have a great valve now, but the need to use warfarin makes it less great.

Anyways, my oncologist called today and he is referring me to an endocrinologist to address the osteoporosis issue. But first, I will have my ventral hernia repaired.

dadzone43 profile image
dadzone43

You are better informed than many. My partner has been on warfarin for at least 20 years. His PCP has never ordered bone densitometry. He is 87.

Teacherdude72 profile image
Teacherdude72

Take vitamin D in large dose daily. The 8.7 if good.Surprised you are not on Eloquis. Fewer problems and no blood tests.

NewPotatoCaboose profile image
NewPotatoCaboose

The only FDA-approved blood thinner for the On-X valve is Warfarin. There are currently no other medications approved for this valve so I have no choice but to take warfarin in perpetuity at this time.

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