I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Apalutamide Side Effects

Email this conversation Print this conversation

User

Posted 02 Oct 2024 at 16:30

Hi.

I would be interested to know if anyone else has suffered debilitating side effects from Apalutamide.

I started Apalutamide at the end of July in addition to my 3-monthly Zoladex injections. Everything was hunky-dory until about 5 weeks in when I started to get joint pain, dizziness and bleeding gums. This got progressively worse. Thankfully, the gum bleeding has now ceased following intervention from my dentist, and the dizziness is intermittent. Muscle and joint pain is a common side effect of the drug, but the pain in my ankles, wrists and especially my hands is getting worse to the point of restricting my day-to-day life. Painkillers do little more than take the edge off.

After week 7 my oncologist stopped the Apalutamide in the hope the joint pain would diminish and then cease. He suggested that the Apalutamide has a half-life of four days and should be out of my system completely after 10, so I should be completely clear of it by now. Following my latest review with no improvement, he stopped it for a further month. The Apalutamide was clearly doing its job, bringing my PSA down from nearly 12 to 1.75 at my last review. My big concern is that the joint pain is permanent and that these side effects are not reversible.

Has anyone else experienced similar?

User

Posted 04 Oct 2024 at 01:19

Bumping your post to see if anyone bites.

Dave

User

Posted 04 Oct 2024 at 08:01

Thanks, Dave. I'm beginning to think I might be on my own with this.

User

Posted 21 Dec 2024 at 20:34

Just bumping this again as I am starting on it on 1st Jan 25.

How has it been since October Hieronymus?

User

Posted 22 Dec 2024 at 11:17

Hi Hankjam. A lot has happened since I last posted, so I will treat you to the condensed version.

My oncologist paused the Apalutamide because of joint pain and later extended this. Joint pain is a common side effect. With me, the side effects took about 4 weeks to kick in. I also experienced bleeding gums and dizziness, neither of which is a known side effect. My dentist was puzzled by my inflamed gums but gave me a new cleaning regime and the bleeding ceased very soon afterwards. My dizziness was more of a puzzle, and I was given an ECG, which came back as abnormal. A 24-hour heart monitor followed that was equally disappointing. I am still being seen by the cardiologist, and new medication and even a pacemaker are currently being discussed.

I saw a rheumatologist, and she remarked that she was beginning to see other men in her clinic on Apalutamide with similar joint pain. She gave me a steroid injection in my backside, and most of my joint pain in my hands and lower legs ceased. This was about six weeks ago. It has since begun to return.

I have talked with my oncologist on the phone and will be seeing her after Christmas. The Apalutamide was doing a very good job and had quickly reduced my PSA from 9.8 to 1.2 at its lowest point. Since pausing the Apalutamide it has shot back up and is nudging 10 once more. The plan is to restart the Apalutamide at a lower dose. I was taking 4 x 60mg tabs daily and will soon be taking 3. I will be receiving regular steroid jabs to combat the joint pain.

I know that not everyone on Apalutamide experiences side effects, and the drug is clearly very effective. I hope it will be plain sailing for you. I would be interested to learn how you get on. Good luck with your ongoing treatment.

User

Posted 19 Oct 2025 at 09:18

Hi, Heironymus. I have been on apalutamide for nearly two months and for a couple of weeks now I have had stiff, slightly swollen, achy knuckles of both hands, worst in the morning.

I have polymyalgia rheumatica as well (morning stiffness, usually around shoulders and hips) which had been well controlled on prednisolone (steroids). It's unusual for PMR to affect the hands, and I think the lack of symptoms in my shoulders and hips suggests it is not the PMR causing my knuckle symptoms.

I am hoping it doesn't work out that I need to stop the apalutamide, as it has worked well with the relugolix to bring my PSA right down (0.05 after a month on it and 3 months on the relugolix).

I am just working out whether to go to GP who is looking after the PMR, oncologist and/or seek referral to rheumatology.

User

Posted 19 Oct 2025 at 11:22

Hi HenryA.

Joint stiffness is a known side effect of Apalutamide. When the stiffness in my hands first started affecting my lifestyle, my oncologist referred me to rheumatology. Initially I was given steroid injections in my hands and later my back side, but it's not a lasting solution. A couple of months relief at best. For me, it's been a case of learning to live with it, but we are all different and respond differently to treatment.

Good luck and I hope you get on top of your problem.

User

Posted 19 Oct 2025 at 13:22

Thanks. That’s very useful to know.

User

Posted 19 Oct 2025 at 17:44

Hi guys, I had not noticed this post before, probably because I wasn't on HT. I have been on decapeptyl and apalutamide for five months. Today has been horrendous trying to do some work at home. The hands in particular have been bad. I sat on the floor to reconnect a data point and getting up was a nightmare,I said to the wife it's time for the knackers yard. Interesting about the rheumatologist and steroids. I am having a steroid injection to my knee,but that is a long term problem. I was persuaded to go back on statins due to high cholesterol,I do read that statins can cause joint/muscle pain. A GP has suggested an alternative medication for cholesterol that isn't a statin.

I had always said I would not have HT and I am beginning to think again about quality and quality.

Thanks Chris

User

Posted 28 Dec 2025 at 11:17

I see it's over a year since I started this thread, and I wanted to add a brief postscript.

Once my Apalutamide was paused, the stiffness in my hands slowly eased until it became only a slight hindrance. Then events overtook me. In October 2025 I suffered a stroke. Thankfully it was a minor stroke with no permanent damage. My oncologist has now extended the pause in my Apalutamide until at least March, as she thinks it might have contributed to the stroke. Stroke is one of the more extreme and less common side effects of Apalutamide. Despite the extended pause, my PSA remained low at my most recent test. I now have to wait several months to learn where my treatment goes from here.

User

Posted 28 Dec 2025 at 17:52

H, thanks for the update, interesting information there. My cholesterol is above normal and as yet I have not gone back on the statins. Wonder if I could be at a double risk of having a stroke. Today is a particularly bad day joint wise, mobility was a struggle, at one point I just sat and cried. Hopefully tomorrow will be a better day.

Added, just an after thought I do get pain in the middle finger between the joints not in the joint.

Thanks Chris

Edited by member 28 Dec 2025 at 18:04 | Reason: Extra paragraph

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Apalutamide Side Effects

Similar Topics

Join the online community now.