So I've been on Lupron/Xtandi since pc diagnosis about 1 1/2 years ago. Doing what it's supposed to--PSA <-.01 and testosterone hardly measurable but in the last three months have developed muscle pain virtually everywhere. Shoulders, hips, back, legs with occasional cramping at night. Only change has been from monthly Lupron shots to 3 month Lupron shots. Would this be considered normal side effects? Ibuprofen helps but I don't like to take it too often. It's especially bad in the morning after sleep.
Thanks for your comments-this group has helped me a lot.
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Jeffdanger
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Hi Jeffdanger, I have been on lupron continuously since 2016 , 3 month injection, and Xtandi since June 2022. The only problems that I have had is hot flashes. Every once in awhile I will have bone pine in my legs, but the pain doesn’t last long. I don’t know if the problems you are having are normal. Maybe someone will respond also. Hang in there friend.
I didn't think about that as I have been on that statin for over three years and do take 100 mg Co-Q-10 but I'm going to stop it for a week to see if there is a difference. I have been on one type of statin or another for over 20 years,
I have been on Luproon for several years and statins for over 10 years. I am on the same statin, it does not give me much muscle cramping like other statins did. I do the same thing if I have cramps, pause the statins for a week or less adn start back up again. I do not take CoQ10, but perhaps I should.
Hey Jeffdanger, I am 74 now and was diagnosed stage 3 in 2022. I can offer you this info. I had a 4mo. Lupron injection back in August of 2022 coupled with a 90day script of Bicalutamide after my radiation treatments. All went well until April 2024. The numbers increased significantly and a subsequent PSMA revealed the cancer had indeed escaped the prostate and move to 2 areas on the pelvic bone and lymph node-now stage 4. More radiation (5 weeks) this past September with a 3 month Eligard (Lupron) injection. This injection did not take, so we had another. It failed to deliver the desired results too.....so on February 5, 2025 I started taking Orgovyv 120mg and Xtandi daily 180mg. A week later my at PSA 3.2 has dropped to 0.01 and Testosterone dropped from 432 to 15. I realize that I have only been on Xtandi 2 months but at this point no muscle pain anywhere.....thank you lord. That said, I do have all the other side effects! No libido, constant hot flashes, generally oversensitive, a voracious appetite (up 21 lbs) constantly tired and a little bit of blurring vision which I intend to address soon. I will share with you that I am walking 3-5 miles daily and taking strength training at my YMCA on MWF. I am alerted to the change of 1month vs 3 month. I have always believed the devil is in details. I hope you can get to the bottom of it, best regards.
I have managed to gain 30 lbs WITHOUT a voracious appetite…..presume it’s the meds that have slowed my metabolism to a crawl……can’t do much aerobic activity due to arthritis…….
I get Lupron shot monthly and take Xtandi daily for 4 years now. PSA undetectable.
I have many side effects: hot flashes, fatigue, brain fog, aches in body…. Never felt it was odd since all those are on the list for possible side effects. Kicks my ass some days, though. I have my good days then have a few days where I pay for it with above side effects.
I take large doses of B Complex, Magnesium, turmeric gummies. Seems to help a bit. Make sure blood work shows no anemia.
I’ve been taking Lupron - Xtandi for 6.25 years and I’m on rosuvastatin as well. I’m super sensitive to side effects of about any drug I take ( super responder ) . Yes , I experience muscle pain pretty much everywhere but particularly from the waist down.
I don’t want to go into much detail that might discourage you because your meds are working so well. Most guys experience light to moderate muscle pain ….. if at all with Lupron Xtandi, some report that regular light exercise , especially using resistance bands helps them considerably. Myself I’m on a regimen of pain meds that make me considerably more comfortable . Obviously the exercise would be preferable to NSAIDS or opiates , but the meds work very effectively for me.
Also, I have a medical grade ( lots of powerful jets ) jacuzzi that I use daily that relax and massage all over that helps immensely . I highly recommend a jacuzzi or hot bath soaks / massage for your muscle discomfort.
Good luck brother , hang in there … you are doing great keeping things under control and extending your time. I strongly recommend going out “ now “ ( this era of your treatment ) and getting into the QOL activities with your family and love ones. Later on you are not likely to be as able or willing as you are now ….. this treatment , probably like all ADT treatments, wears on you / your body over time.
I take 5mg of oxicodone daily since I have additional cronic pain from a fractured spine from an old motorcycle accident. I love the brief sense of euforia this provides as well. Lifts my spirit for an hour or so, although I am wary of the danger of addiction.
I’ve been taking 15 mg of Vicodin for years now. I don’t experience any buzz / high at all from it. I started with 5mg , they have moved me up to 15mg and I’m probably due for 20mg now. My palliative care doctor tells me to “ quit being so stingy “ with my opiates and take more when I feed the need. That just let her know and she will refill whenever I need to. I’m mostly reluctant to take more if I can just “ tough it out “ , …. this morning was an exception where I took more because I was so uncomfortable. ( agonizing pain , sick as a dog , …calling a duck a duck ). I used to have powerful hydromorphone ( Dilaudid ) but they took that back. It definitely gave me a buzz, but worked a LONG time and was very effective for breakthrough pain.
I sold my Harley Dyna Super Glide Custom, stage 2 w/ race tunner …. back several years ago. Ive had over 60 zometa infusions and my bones are as brittle as a parakeet cuddle bone. lol doc said riding that was extremely risky … considering my skeletal wide Mets and extreme zometa intake.
I’m in a ADT wheelchair anyway, that changes everything. I do have a roadworthy etrike and echairs…. So even tho I don’t have my hog any more, I have my beautiful “ Hardly A Davidson “ work-a- round etrike and still get out anyway. It’ll do 28 mph , for 20-30 miles and is legal in all bike lanes and h&b trails … plus switches down the speed and power to drive the isles at your supermarket or drug stores. you might consider an etrike for yourself . They bring your freedom back.
Love ya brother
❤️❤️❤️
Looks like a moped from the front and a handicapped mobility scooter from the back.
Thanks for writing back, Kaliber. You know you are my favorite guy here. I have always loved motorcycles and horses and have paid the price for the freedom. With a fractured spine, I just don't have the balance for any of it any more. I even bump into people going through the doors of Pizza Hut. We had it though. There was a time...........
How much do you exercise and what kind? Muscle pain outright is not a common side effect of the drugs, but certainly weakness, cramping, fat gain, fatigue and more are. Do you have side effects other than the muscle pain?
Great thread.. I have been on Lupron and Xtandi for nearly 3 years. Gleason 9 4+5. I have lost about 40 lbs. And have been able to keep it off with regular cardio and strenth training at my local Ymca. If you have access to workout classes not the weight room I highly recommend these. My Testoterone is about 15 and I still workout like a maniac and feel great. It really works and with doing classes you get to socilize and have fun!! My psa is stable at 0.54 for the past 1.5 years. If anyone is struggling with weight gain try hard cardio classes, it really works and it becomes more like a hobby. Best regards.. David
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