I’ve been on Niraparib 200mg for about 12 weeks following carbo/ calyx for first recurrence.
My bloods have kept stable which is great but I’m experiencing several irritating side effects which I want to ask if any of you have come up against.
Has anyone experienced hair loss whilst taking it? My hair thinned during the last lot of chemo but was just starting to regrow and thicken up again, now it’s falling out in handfuls again.
Also excessive almost burning itching all over body including crown of head. I’ve tried anti allergy creams and moisturising, also Clarityn but nothing is helping. I have no rashes. Also weird sensations as if something is brushing my skin particularly on legs when there’s absolutely nothing there?! I’m wondering if it’s all nerve damage but I’ve had neuropathy in hands and feet since first chemo and this all feels different.
Fatigue and sleepless nights which seems to be common.
I’m trying to decide whether to reduce the dosage but oncologist is encouraging me not to saying it will reduce efficacy. I’m stage 4 incurable with tumours in several different areas but did have a good partial response to the latest round of chemo.
They are only minor irritations compared to all the side effects we put up with but interested to know if any of you have experienced these.
Love and hugs to all sister warriors battling this horrible disease
Claire xx
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Hi There,I've been on Niraparib for almost a year. I had the weird sensations on my stomach, arms, legs and head, drove me crazy and hard to explain to anyone. I was worried I had nerve damage. I found some relief from the odd anti-histamine. I had to take a couple of weeks break off the tabs for another reason and luckily it went during that period and never came back when I went back on.
I have also had hair loss on my legs, really weird and not seen anyone else mention it. Have lots of head hair though.
There always something happening on Niraparib but worth it👍
Thanks for your reply. It’s a very strange sensation isn’t it, extremely irritating but hard to explain. I’m glad you understand what I’m talking about! I’ve also had very low / bad mood with it. However as you say it’s got to be worth it for the benefit it brings and maybe my body will get more used to it and settle down with more time.
Yes it had me rattled but didn't end up being serious. Maybe ask in the chemist about the best kind of anti-histamine to take. I never had any allergies before treatment but do tend to get the odd thing now including hayfever. I don't use any scented bubble bath or scented shower gel, only moisturise with E45 or Vaseline keeping it simple. I thought it could have been due to a washing powder I was using at the time so washed all my clothes and changed to a sensitive non-bio one which seemed to help a bit. Maybe do a process of elimination on what might be inflaming it more.Hope you get to the bottom of it soon xx
My daughter has had different issues on Niraparib and has had her dose reduced to 100mg. Her Oncologist says a reduced dose does not affect the efficacy of the drug. MacMillan have backed this up. Everyone is different of course. Take care and good wishes on your journey.
I’ve also been taking Niraparib for 3 months. Main issue for me is that BP shot up almost immediately, but that’s now under control. Some of the other side effects- insomnia- have gone. I’d say I also had an allergic reaction in my eyes after first month. Kept thinking I had eye infection, but optician thought an allergy more likely, prescribed a topical antihistamine and it quickly resolved.
TBH, I just hope it works for a reasonable length of time. I have some gastric issues which is one of the listed side effects, but which for me, are similar to those I had pre diagnosis. I know a few women who have relapsed after only a couple of months on the drug, so recurrence is my main concern. Xx
I too had insomnia and very itchy legs and dry skin on my feet. I used e45 or a moisteruser on my legs during the day time and went bed having creamed my feet with flexitol or the really lovely Locitane foot cream. ( I sleep alone so wore thin socks in bed)😂. I lost my hair with Paclitaxel but not on Caelyx or Niraparib, however I am now on Gemcitabine and have now lost most of my hair again.
I too am Stage 4b, and have been on Niraparib for over 18 months. I want to reassure you that you’re not the only one with these side effects. My hair was growing back after the chemotherapy, but then started to thin quite alarmingly. My oncologist did tests for Vitamin B deficiency and thyroid problems as hair loss is not supposed to be a known side effect, but all was normal. I think it’s rare, but I feel sure that I have seen other posts about hair loss when on PARP inhibitors. My skin is sensitive to the sun, but otherwise okay apart from being dry, but my scalp is really sensitive all the time. If I forget and accidentally scratch it, or if the shower is a bit hot, it hurts so much more than it should. I have to wear a hat outside whenever there is the slightest glimmer of sunshine (although that hasn’t been much of a problem this summer 😆). The neuropathy in my feet seems a bit worse too, but these small problems are the only ones I have had on Niraparib, and worth putting up with if the tablets are slowing down the progression. I have tried any number of topical remedies, and antihistamines, but none has helped; so if you do find anything, please let me know. I hope you feel better to know that you’re not alone.
I think I’m losing my mind as well as my hair as I said this second chemo I had was carbo/ calyx when it was actually Gem / Carbo!! 🤣 so yes I lost my hair completely with the first round of carbo taxol and was warned hair would thin but not completely fall out with second time. However its not listed as a side effect with Niraparib but clearly it is for some of us. I’m also experiencing the same as you said , hot water on my head is very painful and I’m now ultra sensitive to the sun.
Much as I wouldn’t wish any side effects on anyone else it certainly does help to know I’m not alone xx
Hi. I've been or niraparib for over 2 years 200mg, what I've noticed is my scalp very sensitive to the sun and so itchy, under arms very itchy as well, tried antihistamines for a while but they didn't help, insomnia and fatigue as well, but on the plus side ca 125. Is great, so long may it last😁
I have been on Niraparib for 6 years. I had a lot of the side effects you are experiencing but especially the scalp and skin irritation. I have found I’m very allergic to the sun, not sunburn as such (I’m a redhead so very careful in the sun anyway) more this intense itch which is actually painful. I get it on my ears as well.
I no longer sit or walk in the sun without factor 50, a hat and long sleeve cover up and that really helps.
Maybe try that and see if it makes a difference.
I’m surprised your Onc won’t reduce the dose. My dose was reduced in the first few weeks to 200Mgs after a complete halt for 2 weeks.
Lots of women are only on 100mgs. I believe even that low dose is effective. I am still very stable with no evidence of disease. Hope this helps.
Gosh 6 years? I was told we are only allowed to have it for 2 years because it loses efficacy?
I forgot to mention that about the sun sensitivity probably because it’s been so long since we’ve seen any 🤣 I used to love sitting in the sun but now it hurts my head and even on my legs I’ve found it’s a burning almost blistering sensation immediately. So I’m using factor 50 too although in very hot weather I’ve still felt it straight away.
Great that you are still NED and long may that continue for you xx
Yes 6 years , although a couple of days ago my Onc and I discussed maybe coming off it. She feels I may have had the benefit of it already. Nevertheless she has left me on it for now as I have NED. I guess in 2 months we will discuss again.
Some of your side effects should settle down with time. No harm to stay out of the sun anyway just think how young you will look 😜😜
I took Niraparib 200mg daily for about 14 months and insomnia and raised BP were my main issues, although sensitivity in the sun and low neutrophils were others. I had to stop taking it for periods because of the latter and eventually because of increasing CA125 signalling a recurrence. Just one thing worth mentioning: I discovered that the insomnia was caused by a reaction between Niraparib and my blood pressure medication Amlopidine...not documented anywhere but discovered empirically by myself. I changed from Amlopidine and the sleeplessness disappeared...took me months to work this out, though! Lots of more minor stuff like nausea and or itchiness appeared in the first few weeks but were short-term only so I hope things get easier for you.
I’m due to start Niraparib next week & I’m really not looking forward to it as I’m feeling quite good at the moment.
I decided that I’d like to start on 100mg & see how I tolerate it. I lost lots of weight post surgery & I’m really quite skinny atm so I’m hoping the lower dose will do the job 🤞
Thank you for all your replies. It certainly does help to know I’m not alone nor imagining these side effects.
I have first scan since taking it due next month so hoping to see that it is indeed working and can feel it’s worth putting up with. I’ll also discuss again with my oncologist next week about reducing, it does seem to be very common to do that. My one question is if it is the case that 100mg has the same efficacy then why do they start us on the higher dose to begin with ?! 🤔
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feeling abandoned 
Worried my Ca125 is 145 after 5 chemos, one to go.
Pain relief 
