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Apalutamide restless legs side effects

User
Posted 13 Nov 2023 at 18:33

Hi all,

I started treatment last month for stage 4 prostate tumour after 4 months on hormone injections.

After one week I had to stop due to inability to sleep. I could not even rest at night with a strange tremor sensation in my feet. I have since read that this is known as Restless Leg Syndrome. 

I do take other medication for severe spine pain and associated stress but prior to the Apalutimide I had been sleeping well enough.

I am interested if anyone else has experience, or knowledge, of this. The medication packet here in Czech does not mention this side effect and my oncologist simply looks at me with a confused look🙄.

I will start again on the medication tomorrow but at a lower dose (2 tablets rather than 4). My guess is that the combination of meds resulted in some sort of chemical shock although this is just my own guess.

Sleep is not just important for me, it is vital. One year sleeping well is preferable than 5 years of exhaustion. No question. I imagine many of you understand.

Thanks in advance for any information or advice,

Eoghan

 

 

 

User
Posted 21 Dec 2023 at 18:55
I went back from 2 apalutamide tablets each morning up to 4. I take other medication which helps me sleep. After my monthly stomach injections I will go back down to 2 tablets for a few days. The RLS just feels like my body has too many chemicals to deal with. I try to take more water and food with my medication too.

My Potassium levels have increased above the recommended level of 5 to 6. I see that this is also a possible side effect of this medication. Potassium is harmful to kidney function so that is something that i will also watch out for when deciding if the 4 tablets per day is okay.

I am not a doctor, but I discuss these issues with my oncologist and I am just sharing with the group for your interest.

Best of luck

User
Posted 04 Jan 2024 at 18:16
I am 4 weeks in to Apalutamide now and changed from night time to morning for taking the tablets. It may be my body is getting more used to the drugs but my RLS has become more of a mild agitation in my legs. I still wake up after 20 minutes but the agitation is less intensive and lasts maybe no more than two hours now.
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User
Posted 21 Dec 2023 at 10:54
I started Apalutamide 10 days ago and for the first few days nothing much changed, but then I started to get restless leg syndrome. I get to sleep easily but after about 20 - 30 minutes I wake up and the tingling begins and usually I cannot keep still for more than a minute or so. Sometimes I can drop-off for maybe 5 minutes.

The intensity of the RLS varies from night to night but it still keeps me awake tossing and turning. Added in are 3 or 4 hot flushes so sleep is virtually impossible for about 3 - 4 hours. But then it seems to stop, possibly because I am so tired, and I may sleep for upto 5 hours with just the occasional wake up. I used to wake naturally at around 7am, now it is near to 9am, and I usually still feel tired

Paul

User
Posted 21 Dec 2023 at 11:26

I had the same when I was on enzalutamide.  I researched and in the end I purchased a weighted blanket which made a massive difference to me.   It made it tolerable and I continued until I finished the whole 2 year cycle.

User
Posted 21 Dec 2023 at 18:55
I went back from 2 apalutamide tablets each morning up to 4. I take other medication which helps me sleep. After my monthly stomach injections I will go back down to 2 tablets for a few days. The RLS just feels like my body has too many chemicals to deal with. I try to take more water and food with my medication too.

My Potassium levels have increased above the recommended level of 5 to 6. I see that this is also a possible side effect of this medication. Potassium is harmful to kidney function so that is something that i will also watch out for when deciding if the 4 tablets per day is okay.

I am not a doctor, but I discuss these issues with my oncologist and I am just sharing with the group for your interest.

Best of luck

User
Posted 04 Jan 2024 at 18:16
I am 4 weeks in to Apalutamide now and changed from night time to morning for taking the tablets. It may be my body is getting more used to the drugs but my RLS has become more of a mild agitation in my legs. I still wake up after 20 minutes but the agitation is less intensive and lasts maybe no more than two hours now.
User
Posted 11 Mar 2024 at 15:16

I'm now 3 months into Apalutamide and the restless leg thing has virtually stopped. I can still get a bit twitchy after about an hours sleep and this can last for upto an hour. I also get regular hot flushes which wake me up but only for a few minutes. I stopped taking my tablets at bed time and moved to mornings and since then the restless leg thing has virtually disappeared.

My PSA has dropped from 410 to 0.3 inside three months so I guess the drugs are doing their stuff, so much so that I have just moved to 3 monthly bloods and PSA reviews. 

 
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