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A cautionary tale for those on ADT: Lupron and Osteoporosis
I offer this as a cautionary tale for those on ADT; specifically Lupron.
I have/had osteoporosis of only the thoracic spine after taking Lupron.
Here’s a time line of experiences.
RALP 01/2022. Positive margins; then Lupron 22.5, quarterly shot from 3/2022 till last shot 01/2024.
PSA negligible since then.
Also had DEXA scans; all showed I was 70% to the good: 12/2022, 10/2024, 2/15/25
(Note: some hospitals Protocol calls for scans to only front view of 1 arm and 1 leg - that missed my spinal problem)
Starting mid-09/2025 I had chronic back pain that I attributed to too much walking and a sprained foot for a 10-day period. So probably muscle pain and I got PT my back starting ~ 10/01/25.
Early November pain got severe. Went to an orthopedic specialist. X-ray then was read (incorrectly FWIW) as no spine problem, I ‘should’ get PT; which I was already doing.
Later, pain got really, like blacking out severe.
12/04/25 Found a great orthopedic Dr. He read earlier X-ray as suspicious trouble in spine's thoracic region. An MRI showed T-5, 7, 9 compression fractured. Surgery (kyphoplasty) corrected those.
2 weeks later found T-6 & 8 had just fractured; repaired those.
Since then it’s a long recovery to fight the osteoporosis with Vitamins C & D3 at 6k IU per day and starting Prolia injections.
My orthopedist discounts use of Ca supplements. He says we get plenty of that in food. But C & D3 activate the Ca we have to strengthen the bones. Additional, Ca could encourage kidney stones.
I had been taking increased Ca before his counsel and on 12/26 and 12/27 had sharp pain episodes on my left side. A CT scan showed a stone in left kidney that I passed naturally on 12/28.
My oncologist wouldn’t attribute my fractures to Lupron nor would he not. I guess it’s possible but not common.
So talk to your oncologist AND at least PCP if not orthopedic doctor about osteoporosis risk in any bones.
Good luck my buddies!
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I watched the Sept 2026 PCRI September conference. Within it one of the Presenters stated that “anyone going on a course of adt should have a baseline DEXA scan. It was not offered by my provider, so I asked them about it, and I did the DEXA and found that I had osteoporosis. I was then just one month into Firmagon. I had a consult with an endocrinologist and a recommendation for a zoledronic acid infusion, which I did. Also taking 600 mg calcium twice a day and vitamin d 5000 IU once a day. I do 5 hours weight training per week. My repeat DEXA will be in November and I am hoping for good results.
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3 ReactionsAll this concern and treatment for some of the side effects of Lupron leads me to think more seriously about estradiol, a.k.a. estrogen as an alternate ADT drug.
The side effects seem dramatically less serious.
Wassersug is the most visible promoter of this therapy. He's been using it for more than 20 years. Jeff Marchi posted a recent letter he received from Wassersug on this forum: https://connect.mayoclinic.org/discussion/a-note-from-richard-wassersug-phd-about-the-use-of-estradiol-over-adt/
In one of his online presentations Wassersug indicated that a main problem with estradiol is the clinicians aren't sure about how to prescribe it. This is because its use as an ADT drug is an off label prescription with no validation for dosage in men. He himself says when he started on it decades ago he tested his blood every week until he became confident in how to dose himself.
I asked my medical oncologist about this last week. He isn't an advocate of estradiol, but he knows something about it. He didn't think dosage is a problem, although he admitted he doesn't have any patients using it as their ADT at the moment. He talked as if either he has patients or he knows of other clinicians at his facility who have patients on estradiol. It is used either as their ADT drug or, in smaller dosage, to counter some of the side effects of traditional ADT. I said if I get concerned about the side effects of the Orgovyx I'm on, I will be interested in switching from Orgovyx to estradiol. The conversation moved to other topics.
Quoting from Wassersug's letter to Jeff Marchi: "To the overall health and welfare of patients, ADT with tE2 is as good as with the standard ADT agents in suppressing testosterone. And the PATCH/STAMPEDE data show that tE2 provides as good survival as those standard ADT agents. The important point is it also provides much better quality of life."
(Wassersug uses "tE2" to mean estradiol, or estrogen therapy.)
@oldgreenpaint
Be aware that your body cannot process more than 500 mg of calcium At any time. If you take 600 mg then 100 mg just gets thrown away. Not sure you have a Costco membership, but they have calcium citrate at a very reasonable price with vitamin D and magnesium. 250 mg pills you take two of them twice a day.
I have a pharmacist call me every six months to go over my drugs. The first thing she told me was stop taking anything but calcium citrate. I was taking another kind and it was not working correctly with the other drugs I took.
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1 Reaction@climateguy
Not only does estradiol work as well as ADT to eliminate your testosterone. Even if you are on ADT, it can help reduce the hot flashes reduce the bone deterioration and increase your libido. I know a number of people that have been using it along with ADT. One patch is all you need but the dosage may vary so you need to try different patch dosages to see what works best for you.
@grandpun Thank you for sharing experience with Lupron post- prostatectomy & positive surgical margins & subsequent osteoporosis.
Could I ask why they quickly started you on Lupron after prostatectomy with positive margins? I had prostatectomy 2 weeks ago & have 2- 0.5mm positive margins with Gleason 6 at margin. Urologist said we would follow PSA for BCR & refer to radiation/oncologist at that point. Did you have a high Gleason score or wide surgical margin?
@grandpun Acccoring what I read on the Original Medicare site, if doctor says 'medically necessary' you can get as often as needed. Otherwise, once every 24 months
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1 Reaction@jeffmarc
Yea, We do Costco. I’ll take a look. The 600mg and Vit D were what the oncologist recommended while on adt. He may just be covering all bases since some men are 300 pounders and some are 150 pounders. I am somewhere in the middle😀
@oldgreenpaint
I’m 6’4” and weigh 190. 600 might work but pharmacist said to use 500 mg.
@lyricw
Started Lupron specifically because I had the positive margins (though not stated as a detailed measurement), the aggressive part was at the margin, and the lymph note involvement. I think he said having both those spots it would be best for immediate ADT.
My Gleason score was 3+4=7.
You might consider why your team suggested referral to radiation so soon. Could it be that they figure it's isolated to a specific area of your margin??
Maybe another of our members will comment on your future path considering your G 6 .
Good luck on your path forward.
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1 Reaction@grandpun thank you. Urologist just wants to monitor PSA & refer to oncologist/ RT if BCR. They did not recommend additional treatment at this time. I was curious if they started you on ADT because of PSM.
My PSM are bladder area but Gleason 6 at margin so I am considering getting Mayo second opinion.
I appreciate your feedback.