What dose of xgeva do most take ?

[Tinkudi]

Attaching dad’s dexa scan. Shows osteoporosis and osteopenia in some places. He has bone mets.

One MO has prescribed 60 mg Denusomab once in 6 months. And another has prescribed 120 mg every month !!

What do most people take

[RyderLake2]

Hello,

It depends on how serious your osteoporosis is and what is the risk factor of you having a skeletal related event (SRE). At lower doses Xgeva (denosumab) is often called Prolia. I personally take a 60 mg injection once every six months and have been for ten years. Hope that helps!

[Tinkudi in reply to RyderLake2]

Have you had any side effects from it

[RyderLake2 in reply to Tinkudi]

None!

[Mcrpca]

My husband was on 120mg/1.7cc monthly. He had significant bone Mets and fell frequently. He never broke any bones. No side effects. Not even an injection site reaction. For him, the injection was painless.

[Tinkudi in reply to Mcrpca]

Thanks. For how long has he been on it. Did he have osteoporosis at baseline ?

[Mcrpca in reply to Tinkudi]

He was on it for 2-3 years while on a variety of anti-androgens. He had extensive bone mets but not osteoporosis. His Oncologist put him on it to try to delay bone fractures. It must have worked well because he had numerous hard falls without any fractures.

[Tinkudi in reply to Mcrpca]

Thank you 😊. Why was he having frequent falls ? Was he on xtandi ?

[Mcrpca in reply to Tinkudi]

He also had dementia and couldn’t be convinced to ask for help with ambulation. He was not on xtandi.

[JJFR60]

I used Xvega 60 mgr every month for about a year. But stopped using it because one of the side effects was osteonecrosis ( literally dying of jawbone ) which caused a lot of pain and loss of a molar. In the past 8 years since I stopped I had no problems with osteoporosis or anything like it . So I’m not sorry that I’m not using it .

[Tinkudi in reply to JJFR60]

Did you have osteoporosis when you started using it. For how long had you taken it before you got the jaw reaction ?

[JJFR60 in reply to Tinkudi]

No , I didn’t have osteoporosis. I used it for about a year , then quit immediately.

[Sailing-Todd]

My husband has the monthly infusion. He’s been having it for about a year now. The first couple of treatments he felt quite rough for 48hrs but has no side effects at all now.

[dhccpa]

I get 120 mg every quarter since January 2020. Starting 6/2022 we skipped the next 3 quarterly shots, then resumed again (I was having some dental work).

My first bone density scan in 9/2020 was normal. Next one in 9/2022 showed 2% decline but no osteopenia. Next one in 2-3 months.

[HotRod4321]

XGEVA 120mg: Six months after: diagnosis stage 4 (2 bone mets, nothing in endocrine system, lucky me) prostate cancer, prostate treated with radiation (28 days straight) and Eligard injections every 3 months and Erleada 240mg pills same time every day.

Xgeva 120 mg Injections monthly for 2 years, then every 3 months coinciding with Eligard injections. (This came after 6 months above treatment w/review of all the testing)

21 Rx total, 11 for diagnosed conditions, 10 as needed for side effects.

Results: nothing showing on scans, nothing glowing in the 'glow in the dark' scans. PSA > 0.1%. I am good to go! Should not die of prostate cancer. (Side effects = yup! Lots! Deal with one at a time and keep moving forward!)

I am told that (here in USA) this is latest and greatest for my condition, and I am one to put my faith in my medical providers [albeit, I have had to change major doctors ((cardiology, urology, oncology, GP (General Practitioner), pulmonary, orthopedics)) mostly due to covid shutdown]. And with those changes, my medical treatments have changed very little, if at all. (Meaning that in essence I have gotten second opinions even if I didn't ask for them.)

Never broke a bone in my life (and I should have) until now = broken ribs showing up on scans now. Osteoporosis? When they lined me up in the big donut for radiation, my head had to sit in/on a special block to begin location of body. They could not do that as my neck had locked up! Bottom line solution: bone cracker and PT to break up the crackling in my neck (to get it moving, hey! I can turn my head now!) and who knows where else.

Not sure if any of that is helpful to you, but after being helped many times in this forum, thought it might be time for me to post and try and be helpful.

Good luck in your journey! Godspeed!

[Tinkudi in reply to HotRod4321]

Thanks so much ! I am glad you are doing well now

So you took 120 every month for some years. Did it ever give that dreaded jaw necrosis side effect?

[HotRod4321 in reply to Tinkudi]

Not that I know of.

(Sidebar: You'll forgive me as I try not to look for side effects. Lord, when I listen to an advertisement for a new drug, then they spend the next 3 minutes talking faster than anyone can listen about side effects including 'it can kill ya!' Why in the world would anyone want to take any drug? So, my wife looks for those. Me, I follow my doctors' advice, as should we all and take it one day at a time.)

If I had it, I figure my doctors would have figured it out. (# Dr visits: 2021 = 150+; 2022 = 130+, 2023 = 60+) (After going to the doctors once a decade in my youth, now, I go a lot! UGH!) So, I'm sure they would have found it.

However, after 6 decades of no cavities, I developed a dozen! Dry mouth my dentist says. Yet another side effect I am told.

Godspeed!

PS: Best standard of care here for Xgeva 120mg = once a month for two years, every quarter thereafter, provides the 'best' support' for bone health. (Not me saying it, my doctors said it. So, I do it. I do it for my wife! If it was just me, I think I would go sit in the woods and let nature take its course.

[Splash1953]

I took it for two years every three months injection. I developed a very bad case of ONJ of the jaw that put my hospital for 8 days. They did an operation on my gums but that failed and I have big section of my left side jaw with no gum and dead bone exposed. I have three implants on that side and there is now is gap between the dead bone and implants. I have had three infections after I left hospital. The oral surgeon said we aren’t doing anything until there is major problems with implants falling out. He said to expect more infections and just come back to put drain in and get prescription for antibiotics. He had me take a CT scan and he showed me that it slowly creeping around to the bottom front bone where I have a four tooth bridge. I brush my teeth five times a day and rince with a prescription mouthwash. I am in no way telling people to steer clear of this drug . I am just one the unlucky 5% that got this side effect. Also I always have had bad teeth and that could be a factor. I have ten implants . By the way my wife has Breast Cancer and she has been on Ibrance and Prolia for the past five years with no issues.

[Tinkudi in reply to Splash1953]

So sorry to hear about your pain 🥲. I pray you find some way out of this 🤗

[MateoBeach]

first take him to his dentist and make sure all needed tooth and gum issues are completely addressed. That will reduce osteoporosis risk to very low levels.

His osteoporosis is of quite high degree so I would be inclined for the Xgeva dosing of 120mg monthly for the first year. Then, if repeat dexa is improved he may go to the 60mg every 6 months dosing.

I did the six months dosing for several years then decided to intensify it and now go for the 120mg dose but every three months. No side effects.

[Tinkudi in reply to MateoBeach]

2.9 is like towards start of osteoporosis range right ?

Since how long are you doing the 120 every 3 months ?

[Professorgary]

I started Xgeva and went off after 4 injections. M0 put me on it before dexa scan results were available. After the second injection I noticed shortness of breath and fatigue along with body sores. After the forth injection the fatigue and shortness of breath was really bad as well as it seemed like I was catching colds easily and hadn’t had one for two years. My dexa scan showed normal bone mineral density so I refused further treatment. Something to know about this drug is it has a 30 day half life. This means when you get the second injection you still have half or 50% of the first in your body. Third injection you still have 75% of the first two doses and after the 4th dose you have almost two full doses in your body. I may start it again but only one injection every three months. Right now I have no plans to resume. One other thing to know is that Xgeva compromises the immune system which may be why I was getting colds. God bless.

[Tinkudi in reply to Professorgary]

Hello. Where did you read about xgeva compromising the immune system

So if one take it once in 3 months , then then next dose won’t have any already in body , right

[Professorgary in reply to Tinkudi]

If you google “does Xgeva compromise immune system” you will see several articles including one from WebMD.

[Professorgary in reply to Tinkudi]

If you get an injection in January and skip Feb and March you will still have about 12% of the January dose in your system at the end of 90 days.