Denosumab: Has anyone had any... - Advanced Prostate...

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Denosumab

TTJJ1 profile image
24 Replies

Has anyone had any experience with Denosumab?

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TTJJ1
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24 Replies
GoBucks profile image
GoBucks

I had Xgeva shots for several years, no issues. You do have to have clearance from your dentist first. I had bone mets and osteopenia.

TTJJ1 profile image
TTJJ1 in reply toGoBucks

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TTJJ1 profile image
TTJJ1 in reply toGoBucks

Thank you for taking the time to respond

Derf4223 profile image
Derf4223

Yup. It worked. Get an endocrinologist to work with you on hopefully tapering prednisone, ending Prolia correctly, etc.

TTJJ1 profile image
TTJJ1 in reply toDerf4223

Thanks for getting back to me

RyderLake2 profile image
RyderLake2

Hello,

I have been on Prolia for the past 12 years. No side effects but let your dentist know. Osteonecrosis of the jaw (ONJ) is a rare but serious side effect. Prolia is Denosumab in the lower and less frequent doses. For example, I receive an injection in the belly once every six months. In the higher and more frequent doses it is referred to as Xgeva. I have never received a plausible explanation as to why the name changes. In the area where I live the provincial government has announced they are switching everyone from Prolia to Jubbonti which is another form of Denosumab. I think this is a cost saving measure. Hope that helps! Good luck!

TTJJ1 profile image
TTJJ1 in reply toRyderLake2

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SViking profile image
SViking

i’ve been on 90 day injections of Xgeva for roughly 3 years with no side effects other than tiny little bumps that sometimes itch on my legs and torso. Annual bone density scans indicate my bones are actually becoming denser. Probably due to loading up on organic full fat yogurt along with vitamin K and D. And of course, lifting weights.

TTJJ1 profile image
TTJJ1 in reply toSViking

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janebob99 profile image
janebob99

If you are worried about side effects you may want to use medium to high doses of estradiol, which has been proven to increase bone mineral density by 6-10% over 1-2 year timeframe, with no serious side effects.

TTJJ1 profile image
TTJJ1 in reply tojanebob99

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janebob99 profile image
janebob99 in reply toTTJJ1

I should have said "transdermal estradiol", such as patches or topical gels/creams. Not oral estradiol, which is a bad choice because of increased incidence of blood clots. Transdermal estradiol (tE2) doesn't have any increased incidence of blood clots, compared to oral estradiol. tE2 can also replace Lupron ADT, and it has fewer side effects, namely, no hot flashes and no osteoporosis.

Manilo profile image
Manilo in reply tojanebob99

I am using 75 micrograms patches of estradiol to try to recover BMD. If not fast enough, I will have to add Denosumab

janebob99 profile image
janebob99 in reply toManilo

Good. How many patches are you using at a time?

Miccoman profile image
Miccoman

I was originally started on Prolia, then put on Xgeva monthly. After a year and talking to people I discovered that you really only need it every 90 days so I talked my MO into that routine. I do know that the longer you are on it, the more likely to see side effects. I am now 10 years into getting the shots. Bones very strong.

Only side effect was when one MO took me off it my calcium levels skyrocketed, so new MO freaked out. Now back on and had to increase my calcium intake as it went low. LOL. All has stabilized, though, and I even managed to keep lipids down during cheese binge :-)

TTJJ1 profile image
TTJJ1 in reply toMiccoman

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Manilo profile image
Manilo in reply toMiccoman

If you quit denosumab you need to do zoledronate a couple years I think, or your bones will squeeze all the acquired calcium. You can even have some fractures. This is a must

Professorgary profile image
Professorgary

I guess I am the odd ball here. Tried Xgeva every month and had to stop because of side effects. Restarted after 6 month break taking it every 3 months and stopped again due to side effects although nothing like when getting it monthly. If I decide to try it again I will try prolia which is only half the dose of Xgeva and onlt twice a year.

gsun profile image
gsun

Been on Prolia three years. Bone density scan at two years showed an increase in density of seven percent. I suspect it has continued to rise. Like you, I am osteopenic. No side effects.

ctflatlander profile image
ctflatlander

I took it for about a year and developed ONJ. My teeth were exceptual prior to, It took about a year to fully heal.

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

You should know that denosumab injection products are available under the brand names Jubbonti®, Prolia®, Wyost® and Xgeva®. You should not receive more than one product containing denosumab at the same time. Be sure to tell your doctor if you are being treated with any of these medications.

Tons and more tons in our H.U. History file regarding the use of denosumab. Take a peek...

Good Luck, Good Health and Good Humor.

j-o-h-n

dhccpa profile image
dhccpa

I've used for 5+ years. No problems. Took a year off it from mid-2022 to mid-2023. My bone density dropping 2% every two years on bone density scans from 2020 to 2024.

nitefly70 profile image
nitefly70

I had RP 5 yrs ago. The subsequent therapies have been Radiation Oncology (IMRT) and Androgen Deprivation Therapy. ADT has been 2 parts=Eligard (Leuprolide) and Xgeva (denosumab). Xgeva was recently switched to Prolia. I've responded fairly well to this. My advice is to get a periodic Dexa Scan, as allowable by your situation.

westobutch123 profile image
westobutch123

Just today, I went to an oral surgeon to remove my upper right and lower right first molars as a precaution for when I will most likely be on a "bone strengthening" medicine. My Stage 4 PC is stable at current time but at some point, the hammer will most likely drop. Both of these teeth had fractured vertically (one of them had already had a root canal), but being a dentist myself, I had my sister-in-law (my dentist) do some "rescuing" of these two teeth at my insistence. Both now had some issues, but I would not have done extractions right now without this cancer diagnosis. Figured, get them out at this stage since most oral surgeons I talked to say this type of medicine works in the system very quickly and I did not want to be under the gun if and when I need them. Good luck to all here. Always appreciate the sharing of information and experiences by all here.

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