Hello ladies, I hope you are all as well as you can be today.
I’m wondering if anyone on here has experienced elevated and sometimes irregular heart beat on Niraparib and what your team did about it.
I started on 200mg daily on the 10 th but after an episode a week later my CNS advice was to call an ambulance as it had gone up to 125 I was short of breath and dizzy. They were brilliant, ran all the tests & waited with me until it returned to about 90.
My oncologist took me off it for 6 days and then as my bloods as usual were good I went back on a reduced dose of 100mg a day. Unfortunately it is happening again - any slight exertion sends it soaring - bent down to put an Xmas cake in the oven the other day and it went upto 135. My BP is occasionally slightly raised.
My Onc says as Niraparib is a potential long term treatment and it is not good for the heart to be continually under strain. However she has not seen this response before.
I’m thinking do I need to see a cardiologist?
I would be grateful for your wisdom on this and also the exhausting Insomnia I’ve now got.
Many thanks
Jan. X
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Litchick
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I was really looking forward to getting on this drug and I did after carboplatin got my numbers down to a little bit of nothing and my heart rate started beating and I started getting very nervous in my chest was like shaking and I talk to my doctor and I was on 200 they put me down to 100 and it just I was on it for a while but it it hold held my own for a while I would say almost a year but I ended up having irregular heart rate and I felt lousy the whole time with a 200 my heart rate went up to 245 at one time I went to the emergency room but I read it does really well for others so you got to take that chance because you could be the one that it does great for good luck I'll say a prayer
Hi. I’m on Olaparib and have not had that but do take a beta blocker to lower my heart rate—nothing to do with OC. I did get a fast heart rate from anemia but you say that’s not a problem. Can they try a different PARP? I would see a cardiologist.
Oh yes Jan. I had amazing numbers and a raised BP to match. I was started on beta blockers.
After a few months I was taken off the Niraparib as it wasn’t doing anything for me and my heart returned to normal quite quickly. I no longer need the medication to control it. Everything returned to normal.
It is very frightening when it happens.
I am surprised your Onc has not seen it before. I understood it was a (not uncommon) side effect .
Best wishes going forward. Hopefully it can be controlled and you can get the benefit of the Niraparib xx
Hi JanMy experience was very similar to the 2 ladies above fast heart rate nervousness to the point of paranoia, my mood took a serious dip. My consultant said it was a known side effect and suggested antidepressants and cardiology referral at which point I decided they were not for me. As i am BRACA negative they were my only choice. I took them for a year in total at the lowest dose, i am still clear 2 years on so maybe it gave me some protection who knows xx
It took me several months to start to feel normal again, i did a lot of reading around the very initial studies done on niraparib and it seems they take a long time to clear from the body, my thought is that my body can’t process them as well as other peoples can. I dont have any allergies or reactions to other drugs so it unusual for me to react negatively. If you want to stay on them i would ask for cardiology referral then at least you would know if the side effects are to worry about xx
Hi ladiesI'm one month in to niraparib. Sailed through chemo, but now permanently feel uptight like pre exam nerves and fast heartbeat. Oncology appointment on Friday - feel better just knowing I'm not alone with these symptoms.
Hi. No info to add, I’m afraid, but I’m very interested, as Niraparib has been suggested to me after I finish chemo in January. These side effects worry me, especially as they seem to affect a number of people even at a low dose. I’m pretty small, so expect to be put on a lowish dose, but don’t know how low you can go and still get the benefits of the drug. I realise that this is a relatively new drug, so there isn’t that much experience with it, but any input would be welcome.
Litchick, I hope your heart rate is now back to normal. And that the cake turned out well!
I have been on Niraparib for 2 years now and although there are some side effects I am well and active. I take 2 x 100 tablets daily. I too had some unusual heart rhythms. I have had my heart checked at the hospital and it is fine. Solution is to avoid caffeine altogether and when I am having a heart 'turn' I simply try to relax and breath deeply. This seems to work for me and I try not to worry about it! I am very careful of the sun, use factor 50 sunscreen and a hat as you skin is super sensitive to the sun. Not too much of a problem in the winter! My dads often turn very deep red and are hot but that too passes and not sure if it is a side effect of Niraparib? I have just been 'promoted' from monthly blood check to 3 monthly! Very happy to still be on this earth and relatively well. Good luck with your treatment.
Hi there, I am pleased to read you have had few issues with this medication as I am due to start it on Friday and am so so anxious about it. Imagining all sorts.
Hello Karen. I so hope this amazing drug works for you. Keep a realistic note of your symptoms and if you are worried about any of them I am sure your Nurse specialist or Oncologist will advise you.
Hi winks, I was on 200 mgs. Of niraparib , but I got short of breath and very dizzy. I needed a blood transfusion because of that 200 mgs. They took me off for a short time and now I have weekly blood draws on 100 mgs. Don’t know what will happen next. Got my fingers crossed. I also have neuropathy in my feet. The side effects can be dangerous on this drug, so they need to monitor me. I have stage 4 and it is quite the journey. Donna
I was on Niraparib for 2 weeks at 100g, then 200g for another two weeks - I did notice an increase in palpitations at the higher dose, but the worst was my blood pressure, which shot up, so I was told to stop it and go on BP meds to get it stabilised. It took 3 weeks for my blood pressure to return to its normal level (I can't say I noticed the BP med did an awful lot, I think it restored itself once the niraparib cleared my system) and I restarted the niraparib last night at 200mg, along with BP meds, so have yet to see what happens. I did consider not taking it again, because having to take BP meds as well is sort of adding insult to injury - the niraparib irritates my stomach, and so do the BP meds. I also did not fancy a return to not being able to sleep properly as well as generally feeling fatigued, unmotivated and somewhat depressed, but its either try niraparib again or I'll be on chemo inside 3 or 4 months. Not sure what's worse, frankly, it's the usual cancer 'rock and hard place' situation, but I'm giving it a shot...
Hello Miriam. Sorry to read about the issues you have had with Niraparib. Fortunately my BP is always low and has not gone up with this drug. I do hope that it works for you this time. Chemo is awful too!
My BP has always been low too, sometimes too low, so to suddenly have high blood pressure was a complete shock... I couldn't work out why my head was pounding and my neck and chest were sort of throbbing, with a feeling of pressure - until it occurred to me to check my blood pressure. I've got my own BP machine, had it for some years, to check it when I felt faint or dizzy to see how low it was, not how high... Yes, chemo is awful too, but you have it and then get a break - I hate not being able to sleep very well, does the Niraparib cause that for you too?
I have been in Niraparib for 30 months now, had a dose reduction to 200mgs early on due to side effects eg Liver
Enzymes through the roof, high blood pressure and heart rate., fatigue and insomnia. However my heart rate was never above 100 and didn’t increase on slight exertion. Oncologist wanted to start anti hypertension meds but I declined. Everything resolved apart from insomnia and a little fatigue. I manage this by resting when needed and thankfully I’m retired so can do this easily.
A cardiology review might be useful however if this has started due to Niraparib and you are now on the lowest dose, it may be this drug is just not suitable for you. It might be worth asking if you can have something else ? Have you tried a dietary approach as in cutting out stimulants such as tea or coffee etc?
I swear by a largely plant based diet for good health in general and cancer in particular and I’m sure it has helped me to stay well.
Sorry about your heart rate. I have other side effects on 200 mgs. and needed a blood transfusion. They took me off the 200 for a short time. Now , I have started 100 mgs. and am having weekly blood draws to monitor me on that dose. This drug can have serious side effects and we need to be monitored. My hemoglobin dropped so low that I was so dizzy and short of breath. Now I will see what happens on this 100 dose. Take care, Donna
Hi Jan, I have been on Niraparib for around 7months I have never experianced anything like that. The only thing I have now is nausea usually 15 mins after I have taken them and Im on 300mg, strange how that is happening to you hope your team can find a way to stop it . take care Sandra x
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