Niraparib

[PaumicB123]

Any advice ladys just been prescribed niraparib

[LovemyJackRussell]

Hi there, my best advice would be to get started and see how it goes. Are you in the UK? If so, the current starting dose is 200mg per day. I think it used to be 300. I have read on here that people who find it hard to tolerate are reduced to 100mg per day.

I seem to be very lucky as I don't have much in the way of side effects. Some joint ache when I wake up but once I am up and about it doesn't worry me. Occasional slight nausea, but an anti sickness usually works.

They do suggest that taking it at bedtime can help with nausea, but I take it in the morning as I'm much more likely to remember!

I am sensitive to the sun, and my skin (even my scalp) begins to prickle very quickly in the sunshine. I bought a wide brimmed hat which keeps the sun off my scalp and face.

I sometimes have trouble getting to sleep, but reading usually helps, and it is not every night.

The pharmacist at the hospital talked me through it when I got my first prescription and after that it gets delivered to my home.

I've only been on it for 4 months and so far, so good. Do ask if there is anything else you want to know. Good luck with it, stay positive and think of how it is helping keep this nasty disease at bay.

[PaumicB123 in reply to LovemyJackRussell]

Thanks for thoughts and information

[Kamloops]

Hi. I tolerated 200mgs well. The advice now is to take it in the morning. I expected to have side effects when I started so was surprised 6 months in when I had headaches that my BP had shot up. Easily managed with a hypertensive meditation. I did panic because I thought they would stop it. Apparently side effects can come and go. Good luck 🥰

[NewtonEmma1900 in reply to Kamloops]

I was on Niraparib for a year before it stopped working for me. I started on 300 mgs but it had to be reduced to 200mgs. I occasionally felt a bit nauseous first thing in the morning and I also was affected by the hot sun. However insomnia was the worst side effect for me, my GP prescribed zoplicone for me for OCCASIONAL use so I only took them when exhausted. (I have just finished 4th line chemo and lost my hair again☹️). Sending hugs and best wishes 🙏

[Hockeymom52 in reply to NewtonEmma1900]

This is what’s happening to me now. I was on Niraparib 100mg for 8 months now my CA125 is over 40. Had a CT scan it showed a small amount of ascites. Next is PET scan as Dr. is sure it’s recurrence. Discussed more chemo with Keytruda . I guess Niraparib doesn’t work for everyone. Hope all goes well for you with your treatments. X

[Bookclublover]

Hi, I’ve been on 200mg Niraparib for 5 months. My BP shot up within days of starting but it’s well controlled by one Amlodipine. I’ve always taken it in the morning, so I’m not taking it on an empty stomach. I find that I can become a bit nauseous if I don’t take enough carb, particularly in the morning.

I had the sun sensitivity thing initially, and also very dry, irritated eyes, both of which resolved very quickly. I’m careful in the sun- sunscreen, hats etc.

My main fear about the Niraparib- and I’m sure I’m not alone- is that it doesn’t work for very long. After only 5 months I’m already experiencing recurrence symptoms and my CA125 is rising, though scan clear 🤞🏼🙏🏻

I’d reiterate what someone else advised - don’t be afraid of it. I know lots of women on it and they all tolerate it very well. Good luck ❤️

[PaumicB123 in reply to Bookclublover]

Thanks for your reply and information good luck on your journey

[BallyMacfan]

Hi been on niraparib for two years I was told I might not be able to tolerate it and the side effects was endless .There was a few bumps at first like insomnia but it soon settled down my BP went quite high but I check it at home now my team are happy with it .

I know everyone is different but for me at the moment things are good niraparib has given me hopex

Take care x

[PaumicB123 in reply to BallyMacfan]

Hope it continues and you ok thanks for your reply

[Hannah54]

hi PaumicB123, I’ve been on Niraparib for abt 18 months. I got high blood pressure to start with but it soon settled down without medication. I take 200 mg a day, started in the morning but now take them at bedtime so no more nausea. Different symptoms have come and gone but mainly I have achy joints, sun sensitivity and I do get more tired than before . I try to stay hydrated and wear sunscreen and hat when outside. All in all im happy to be on them. Good luck ☺️Xx

[PaumicB123 in reply to Hannah54]

Thanks for your reply and good luck