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,
Mark Cuban's costplusdrugs.com has it also at a pretty good price-$76.01 for 4mg. 90 day supply delivered. A little more than allday but probably quicker to get.
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.
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
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...........
Thanks for the flowers buddy . Hey !!! We could get some bungee cords , ratchet straps and one of those inflatable butt donuts and strap you into a etrike and you’d be out and about nearly good as ever . Rotflol.
That’d probably be until your spine collapsed and paralyzed you. lol. Still , if that did happen , “ they “ can usually fix that quickly nowadays with stainless steel rods that make you nearly good as new. My friend Mark ( my friend Urang on the group , now passed after 23 years ) had around 14-16 operations on his spine and a LOT of stainless steel rods and bridges . He hiked , hopped and skipped and got around way better than I can. He was never “ down “ for more than a couple of days …. Always quickly back on his feet after surgery.
You might not , understandably, not want to temp fate but it’d likely be ( just imho ) pretty effectively fixed , maybe better than when you started . The point being that if you do have the worse happen with that fracture, today’s ortho medicine has come leaps and bounds …. probably amounting to a just temporary event that you can bounce back from better than ever. Just my thoughts , ….. I have a couple of spinal issues too , and I look to Marks experiences as encouragement for myself if the worse happens.
So just to follow up I would like to thank everyone for their replies and some interesting insights. I stopped the statin for a week and a half now without any noticeable change. I didn't mention it before but I do take Flomax so I stopped that about three days ago and have seen at least a 50% improvement in symptoms. I'm thinking that maybe that was a big contributer to my aches and pains and will be consulting with my MO next week.
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