Osteoporosis meds: I've been on... - Advanced Prostate...

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Osteoporosis meds

NewPotatoCaboose profile image
18 Replies

I've been on coumadin for almost 11 years for a heart valve replacement and Orgovyx for about 2 years and three months for metastatic prostate cancer. I just had my first bone scan in August 2022 and a second Dec. 8, 20203, and bone less is progressing. I've been using estradiol patches for about 10 months and hoped to see a little stabilization in my numbers but didn't. But coumadin is well-known for its effects on bone density and had a good head start on the Orgovyx.

Anyways, my question is, as I'm now looking at the various Osteoporosis drugs, I'm wondering if anyone has had good experiences with these meds. I've heard they can be problematic, but feel I need to consider these because of the ever-elevating fracture risk from bone loss.

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NewPotatoCaboose profile image
NewPotatoCaboose
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tango65 profile image
tango65

What are the T values.? Is your cancer castration resistant?

If the cancer is not castration resistant, and T values are greater than -2.5 (no osteoporosis) denosumab or biphosphonates are not indicated.

NewPotatoCaboose profile image
NewPotatoCaboose in reply to tango65

Proximal Femur has a T-score of -2.8. The other scores are below -2.5. Cancer is not castrate resistant.

tango65 profile image
tango65 in reply to NewPotatoCaboose

You should discuss treatment with denosumab or zoledronic acid since a T score of -2.8 indicates osteoporosis and it should be treated.

Sailing-Todd profile image
Sailing-Todd

Hi, my husband has been having Zoledronic acid (Zometa) infusions every month for the past six months.

The first one he felt very rough for two days, the second one he felt a bit rough for two days and the subsequent ones no side effects at all.

His MO has said he will be on it for two years because it shows no further help if taken any longer than that.

Grandpa4 profile image
Grandpa4 in reply to Sailing-Todd

Sounds like he is taking it for bone nets. Dosing is completely different than used for osteoporosis.

CountryJoe profile image
CountryJoe in reply to Sailing-Todd

Begin to take acetominaphen 500 the day before and for 2 days after zometa. It helps greatly.

Explorer08 profile image
Explorer08

if you’ve not already you might see an endocrinologist for osteoporosis. Most are adept at dealing with the issues. My wife’s endocrinologist has her on Tymlos since she cannot tolerate drugs like Prolia, etc.

dixiedad profile image
dixiedad

Following my ADT treatment my bone scan showed osteopenia (Not quite osteoporosis...yet). My urologist recommended calcium citrate early on. After my own research I also began taking D3 and K to help with absorption. I began working out with 13 lb. dumbbells for about 25 minutes, twice a day.

I also do 45 minutes on a stationary recumbent bike while watching TV. Again, morning and afternoon. The bike has very low resistance but it's movement.

Weather permitting, I do about a mile of Nordic Walking every morning. It's like cross country skiing, bit without snow.

My last bone scan showed a 5% INCREASE in bone density. If you're able, weight bearing exercises are highly recommended.

Good luck.

82, male, U.S.

NewPotatoCaboose profile image
NewPotatoCaboose in reply to dixiedad

That is awesome you were able to improve the density! I'm taking calcium and D3, but can't take Vitamin K because of the warfarin. I lift 8 pound barbells daily after a generally daily stationary bike session. But I'm not able to do it at the level you are.

dixiedad profile image
dixiedad in reply to NewPotatoCaboose

I'm taking Apixaban and Dofetilide (afib) and all my doctors know I'm also taking K. No one has told me to stop ,except prior to some minor surgery.

I started with 7 or 8 lb weights and as it got easier I added more weight, a bit at a time.

Hey! MERRY CHRISTMAS!

MoonRocket profile image
MoonRocket in reply to NewPotatoCaboose

If you let your cardiologist know you need to take K, they can adjust your warfarin dosage I believe. Cycling is great for cardio but abysmal for strengthening bones. In fact, many professional cyclists suffer from osteoporosis

getwellen.com/well-guide/cy....

A conundrum since severe osteoporosis limits what a person can do. IF you have access to a rowing machine, I would swap the cycling for rowing. Rowing contracts the muscles which stimulates improvement in BMD. You will also get cardio and upper body workout too. Couple that with weight training and you'll be good.

Boywonder56 profile image
Boywonder56 in reply to NewPotatoCaboose

I actually reduced bone loss in spine...where mets are...but am osteopena in left hip....doc wants to do prolia or xgeva but side effects ..esp dental made me pass.....enough is enough ....bw

CancerConcierge profile image
CancerConcierge

Hi, I’m the spouse…but can share some information as I have severe osteoporosis in the lumbar spine… T Score -4.3…I work with an endocrinologist at Mayo, this month I had my first Evenity injections and will have them every month for a year… I will have to follow up with another drug after the year, most likely Fosamax to maintain any gains.

No side effects after first injections.

Years ago took Fosamax for about 7 years, no side effects.

Evenity is an anabolic bone medication, like Forteo and Tymlos.

I recommend getting Dr Lani Simpson’s book, “ No Nonsense Bone Health Guide”… good primer on all things osteoporosis related … she also has a Facebook group that is helpful.

-2.8 is just barely osteoporotic… get some good consults with specialists … all the bone meds have possible side effects… a specialist would hopefully look at your complete medical profile to make the best recommendations for lifestyle changes and medical treatments.

(The one bone medication I would stay away from is Prolia, but that’s just for me.)

Best of luck!

Bethpage profile image
Bethpage in reply to CancerConcierge

I have about the same number in lumbar spine. I did 2 years of Tymlos and 1 year of Evenity. I envy you because I had nothing but losses.

CancerConcierge profile image
CancerConcierge in reply to Bethpage

I’m so sorry to hear that! How very frustrating!

NecessarilySo profile image
NecessarilySo

I get a Prolio (denosumab) injection every six months. My T score since has declined from -2.8 to -2.5. I also do some weightlifting 15 pounds on each side of a lift bar, to ceiling and then to floor, 5-10 times, and treadmill walking 2.5 mph 5 minutes per day. I also take D3 2000/day. I'm 77.

j-o-h-n profile image
j-o-h-n

I am currently debating whether or not I should have the procedure called WATCHMAN to eliminate taking Coumadin. (See below)

Blood thinner medications, also called anticoagulant drugs, are an effective way to lower the risk of stroke in people with atrial fibrillation, or AFib, not caused by a heart valve problem.1

The blood thinner warfarin (also known as Coumadin®) has been around for more than 60 years. There are also several newer blood thinners available now, including Eliquis® (apixaban), Pradaxa® (dabigatran), Xarelto® (rivaroxaban), and Savaysa® (edoxaban).

For people who need an alternative, there are heart procedures that can effectively reduce the risk of stroke. WATCHMAN is a permanent implant that does just that.

Note: I wish to offer my apologies if I offended anyone regarding my so-called humor about "race" or "misogyny". To me, humor is boundless and since we entered this word crying, I thought it would be a good idea to exit laughing.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/21/2023 6:05 PM EST

TryGuyCP profile image
TryGuyCP

Look into OpsteoStrong.me if you want to avoid drug SEs and instead have natural trigger for the bone strengthening. I have near-by location and already has my first session. My T-score is -2.7 in single remaining right hip (I fractured left this July after simple bike fall and had it replaced) and -2.4 in the spine.

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