Niraparib

[NewtonEmma1900]

I have just started on Niraparib and just want to ask about side effects. If you get them; Do they kick in quite quickly or are the more cumulative? Katy

[Skyeplus]

Hi, I have been taking Niraparib since August 2022. So far I have found that the main side effect for me is constipation which I have learnt to manage over the months. I was okay for the first few weeks then it kicked in. I also seem to get quite tired. Your team will monitor your blood pressure and so on…so far that’s been it for me, but we are all different. I take three tablets each day …300mg. I’m 68. Take care xxxx

[NewtonEmma1900 in reply to Skyeplus]

Thank you, I have a repeat prescription from my gp as I got constipated after chemo so I will prepare myself for that again. I went back to working 2 days a week last Summer and also have a very energetic dog so I will have to learn to ‘pace myself’. (I am 71) . Wishing you well on your journey. 🙏

[LesleyGB in reply to Skyeplus]

Hi !

Started at the beginning of December. Within a week I had constipation (I am veggie so not used to that!). I take prunes now with natural yoghurt and have been okay. Watch for UTIs - I have had two since I started taking Niraparib and I think it is a known side effect. My GP is discussing with my Oncologist whether it is okay to put me on a prophalaxis of a low dose of antibiotics to keep it at bay.

x

[Tulips66]

Hi Katy, I started on 300mgs of Niraparib nearly 6 weeks ago. For the first 3 weeks I suffered with very bad reflux, nausea, heartburn. They gave me anti sickness tabs to ease this discomfort but they didn't help at all. I started drinking milk & my stomach settled then. I was delighted with this & thought to myself "I can do this" . A few days later I went into the hospital to have my bloods done & I was told my platelets were too low so I had to stop taking the Niraparib for a week. A week later bloods were done again & platelets were even lower than the previous week so I am still off them. I have to go in again next week & if the platelets have recovered I will go back on a lower dose. They did tell me that there would be a bit of tweaking in the beginning but so far its not going well for me, but we all react differently to treatments so hopefully you will be fine & not have any symptoms at all. Best of luck on them & let me know how you are getting on X

[Alice77]

Hi. After a couple of cycles the nausea disappeared. The tiredness only kicked in when I was suffering from neutropaenia and monthly Filgrastim sorted that out.My major problem was severe and constant insomnia which made me miserable. I waited almost a year hoping for improvement but the only sleep I got was a few broken hours, sometimes none, with breaks when I had to stop the Niraparib because I caught Covid or my neutrophils were too low.

Finally I did some research of my own because the only options offered were more sleeping pills, anti depressants etc which I am reluctant to consider long term . I wondered whether the problem might be related to other drugsI was taking so checked out the Levothyroxin and Amlodipine. I discovered that both can keep you awake so asked my GP for a different blood pressure controlling drug...I need this specifically because Niraparib has raised my bp. Four days in using something other than Amlodipine with four nights of continuous 7 hour sleep has resulted.

Message from this is that side effects of Niraparib should decrease in time, and don't assume that this is the drug at fault. I can take Niraparib or Amlopidine if each is on its own but for me it seems to be an unfortunate cocktail. My GP says there is nothing in the guidance to suggest that Amlopidine should not be prescribed in these circumstances and it is the usual blood pressure drug for over 60s, so either this is a one off or something which should be investigated.

I would persevere and I hope things get easier for you.

[NewtonEmma1900 in reply to Alice77]

Thank you for your help Alice, I started my 300mg dose last Wednesday, I have yet to have a blood test and blood pressure check for this week but have taken note of your advice. So far I have had one bout of sickness ( completely out the blue whilst driving my car) and I am more tired than usual but I do have a cold. I don’t sleep well anyway; as I get hay fever though I just take half a piriton at night. Did you take your own blood pressure at home or go to your hospital/nurse? Best Wishes Katy

[Alice77 in reply to NewtonEmma1900]

Thanks Emma. I am taking 200mg as a maintenance dose. I was violently sick the first night but stopped the anti sickness drugs asap as they make the constipation much worse. I am also taking the capsules in the mornings now that the nausea is no longer a major problem and this seems to make sleeping easier. I check my own blood pressure at home, not least because I have white coat syndrome and it rockets in any medical setting so I have always kept my own readings to counteract theirs. I have monthly blood tests but that's all. I hope you are getting on ok with the Niraparib. My cancer story and dates are very similar to yours. I am 72 and hoping to get much older. I think being g active and outdoors really helps so it sounds as though you will be doing all the right things. Just have rest when you feel tired. Best wishes.

[NewtonEmma1900 in reply to Alice77]

I just read your journey, indeed there are many similarities. Best Wishes 🙏

[Rosado22]

I’ve just started too. Apprehensive! Had four days then had a uti so three days off, and have just taken three more days worth. Have taken two anti sickness that’s all. I do my blood pressure readings at home and the nurse asked for them on the weekly telephone consultation. So I was told to ask gp if blood pressure needs monitoring and am in discussion re that- whether getting blood pressure tablets. It is a journey into the unknown, but I felt so grateful when my oncologist said that two years ago for ladies in my situation it would be chemo.

[NewtonEmma1900 in reply to Rosado22]

Thank you Rosado.I think I will buy a blood pressure monitor. Best Wishes. Katy