Enzalutamide v Apalutamide

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Hi all. I'm new to this forum, and just wondering if anyone has any experience they are willing to share.

I'm currently on Enzalutamide together with Zolodex for a recurrence of my PC - after 14 years free. Its turned up in a lymph node and I've just completed a 20 round radiotherapy course. The tablets/injections will be long term and I'm used to the side effects (hot flushes, tiredness etc) from my experience previously. BUT I am not used to the Restless Leg Syndrome (RLS), which is driving me up the wall.

My partner and I have had to resort to separate bedrooms, due to my constant moving around at night and obviously the lack of sleep is compounding the tiredness.

Interested to know if anyone knows any 'cures' for RLS, or whether I should switch to Apalutamide, which doesn't appear to exhibit this side effect - although there will no doubt be others!

Thanks

Prostate Worrier. 7 months ago

Hi CannesMan.

Good afternoon and welcome to our prostate cancer family I am very sorry to hear that your PC has returned after 14yrs of being free.

Yes I am on Apalutamide Tablets and Prostrap Injections and I have all of the mentioned side effects apart from your RLS.

So maybe it might be a good idea to ask your medical team about switching to Apalutamide to see if this will help with your current problems.

We have got other members who will be in touch shortly with their experiences/side effects with Apalutamide and Enzalutamide to see if they experience similar problems with RLS.

Please please come back to me if there's anything else that I can help/support you with????

Prostate Worrier.

Alwayshope 7 months ago

Hello and welcome CannesMan .

There is some anecdotal evidence that Apalutamide has also caused RLS. Maybe another approach is to reduce the dose of Enzalutamide and gradually build up to the full dose. There are also dopamine agonists which might help as a first line treatment. Definitely something to run past your team.

community.prostatecanceruk.org/.../t29924-Apalutamide-restless-legs-side-effects

CannesMan 7 months ago in reply to Alwayshope

Many thanks Alwayshope. Interesting that my consultant hasn't flagged up RLS with Apalutamide, but I guess it doesn't affect everyone (viz Prostate Worrier). Thanks for the link, will follow this up together with the dopamine agonist suggestion.

CannesMan 7 months ago in reply to Prostate Worrier.

Thanks for your support. Trying to navigate the world of hormone therapy is a nightmare! Interesting to see if anyone else has similar problems with Enzalutimide and how they've overcome them

Alwayshope 7 months ago in reply to CannesMan

Good morning CannesMan .

I have found a recent article which indicates that both Enzalutamide and Apalutamide could be linked to Restless Leg Syndrome. It is by a sleep clinic and gives an idea of treatments available. I hope you find a solution.

https://academic.oup.com/sleep/article/47/Supplement_1/A504/7655079

Alwayshope 7 months ago in reply to Alwayshope

This then got me wondering if one of the other second generation antiandrogens might be an option. Abiraterone works in a different way to Enzalutamide and Apalutamide and an article suggests that the incidence of RLS is less with it. Another option could be Darolutamide which does not penetrate the brain/blood interface to such an extent as the other drugs.

https://www.nature.com/articles/s41391-019-0195-5

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