Hi all,
I’ve been on Xgeva for about 2 years to maintain bone density. I started with monthly injections and recently went to injections every 3 months. After the last injection 2 weeks ago, I’ve had bad pain in ribs, back, hips and thighs. Does anyone have similar pain? Does the pain get worse over time? I don’t recall having pain when I started with the med. I’m thinking of stopping the Xgeva and switching to another drug (Prolia?) because I can’t take the side effects.
Hi Carguy
I take Xgeva since 7 years. I noticed indeed small pain in bones after the injections. It last a few days. However it has disappeared in the last injections maybe be because I make them now every 6 months.
This happened to my husband. He was fine for eighteen months and then the last two treatments caused him extreme pain.
His doctor said he had probably had most of the benefit from it after this amount of time and took him off it.
His experience sounds similar to mine. Thanks.
Prolia is the same drug (denosumab) as Xgeva -- just a different (smaller) dosage.
My doctor stopped it after a year it destroyed my jaw bones resulting in four oral surgeries and the loss of my top teeth and a good amount of my bottom from what I understand it could happen to 2 percent of the people taking it lucky me. Never give up never surrender Leo
I did the monthly for 4 injections and stopped because of numerous side effects. I waited about 8 months and restarted but every 3 months. Did 2 injections and now refused the 3rd injection. Side effects weren’t nearly as bad on three month dosing but I had enough. This stuff has a 30 day half life which means if you get an injection every 28 days you will have a double dose in your system after the fourth injection. This equals 4 prolia injections.
Good to know….thanks.
Why not consider supplemental estradiol? It's well know to prevent osteoporosis, and has none of these side effects that people are talking about.
In my own personal experience, while I was on ADT (Orgovyx) and high-dose estradiol, my bone mineral density increased by 10% over a period of 8 months (measured by DEXA scans).
Something to consider....
Bob -
I think because most Docs will be negative if that possibility is mentioned!! Very few will voluntarily mention to patient. The big SE frrom estradio is breast enlargement, correct? Probability?
Are any countries using estradiol for osteoporosis? I happened to see a video frrom a DR.Doug.....says he is retired orthopedic surgeon now specializing in helping folks, mostly women, battle osteoporosis by exercise, supplements diet, etc.....and drugs when the situation, in his opinion, merits drug use. I may have forgotten, but I believe he has mentioned estrogens)estradiol) treatment only in the context of many women fear the SEs of that treatment? Comments? Maybe I will try to reach him and pose the question of its use by both men and women....both my sis and I have low BMD,,,mine worse than my sis!! I p;an to pay $220 to have the REMS scan he advises......I'm terrified of the possible (1-2%?) probability of ONJ with the alendronaate presctibed for me....of course that fear may be misplaced in the context of a man with PCa and a near-osteoporotic BMD, and on ADT.
One of the replies above certainly reinforces my fear of ONJ!!
I've been on denosumab 120 mg every three months since Feb. 2020. Paused for a year mid-2022 to mid- 2023. I've never had pain issues, but my dose is pretty moderate.
Why am I getting pain from using Xgeva?
From Mr. A and Mrs. I.
ChatGPT said:
Xgeva (denosumab) is a medication used to treat bone-related conditions, such as preventing fractures in cancer patients with bone metastases, treating osteoporosis, or managing giant cell tumors of bone. It's a type of monoclonal antibody that works by inhibiting a protein involved in bone resorption.
Pain or discomfort during or after Xgeva administration can occur for several reasons:
Injection Site Reactions: Xgeva is administered through an injection under the skin (subcutaneous). You may experience pain, redness, or swelling at the injection site.
Bone Pain: Some patients report bone pain, especially if they are being treated for conditions related to bone metastasis or osteoporosis. The medication works by affecting bone metabolism, and this can lead to temporary discomfort.
Musculoskeletal Pain: Pain in the muscles or joints can occur as a side effect. Xgeva can sometimes lead to aches in these areas.
Low Calcium Levels (Hypocalcemia): Xgeva can lower calcium levels in the blood, which may cause symptoms like muscle cramps, pain, or tingling in the hands, feet, or face.
Other Side Effects: There are other rare but serious side effects of Xgeva, including osteonecrosis of the jaw (pain in the jaw, swelling, or infection) or atypical femur fractures, which may lead to bone pain.
If you're experiencing pain after using Xgeva, it's important to speak with your healthcare provider. They can help identify whether the pain is related to the medication, the underlying condition being treated, or another factor. They may also provide strategies to manage the pain or adjust your treatment plan if necessary.
Good Luck, Good Health and Good Humor.
j-o-h-n
Thanks j-o-h-n. This is good information.
You're welcome........... now I expect a 2025 Tesla in Fed-EX package mail....The NY mafia model, comes equipped with two hoods.(candy apple red).
Good Luck, Good Health and Good Humor.
j-o-h-n
Can I have one too! Thx for the laughs!
Of course. You can have mine as soon as they clean the lipstick off of the back seats and get those high heal marks off of the ceiling. No need for other concerns since "all" batteries in the car work just fine. Wink Wink.
Good Luck, Good Health and Good Humor.
j-o-h-n
Consider asking for a bone density (DEXA) X-ray scan, a brief (10 minutes) scan that checks for osteoporosis. If you have no signs of osteoporosis, then your doctor may consider stopping the Xgeva injections.
Thanks, I did have a scan and had osteopenia, not osteoporosis yet though.
Zometa and denusomab are not the same drug. Prolia does not go through your kidneys. Xgeva does. There is a 5 year limit on xgeva. After that you might want to switch to prolia.
Not sure this will be helpful. But I do sympathize with you.
I have continuous old man's body aches and pains. I didn't really notice any changes after they added Xgeva to my ADT (Androgen Deprivation Therapy = Eligard, Erleada 7/2021) for my bones after 6 months. Not sure what they saw to add that. Body aches and pains got a bit worse, but nothing really stood out to me. I take long hot (105F) jacuzzi tub baths and pain meds to help be sleep through the night. In 2024 the doc asked me to take Caltrate 600 +D3. Haven't noticed any change.
We all walk in different shoes on our own journeys. Wishing you luck in yours! Godspeed!
Carguy = which cars?
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