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Apalutamide Side Effects

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.

 

 
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