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Hi Ladies

Bad weekend. Headache from Hell and numb tingling left arm and scalp. Really heavy swollen eyelids and struggle to keep them open. Rang helpline Saturday and told to go to local A&E. checked over, bloods fine but blood pressure very high contact gp Monday this could be causing headache.

Sunday still felt worse if anything rang helpline and told to go there and be checked over.

They decided Niraparib causing problems, stop and contact consultants secretary Monday. Husband quite happy about this cos he thinks meds cause of all problems.

This done and now waiting to see where we go from here.

Really hope this right decision..

Hope everyone keeping well

Janet

[Lindaura]

Hi Jan,

What a shame. I hope that your disease remains stable and that you get to see your consultant ASAP.

You could just have an underlying virus, but your symptoms sound really unusual.

Perhaps your consultant could have you stay inside the hospital for a really deep check up.

For blood clots, anything, as this seems totally out of character for Niraparib.

Wishing you all the best,

Laura

[Hidden in reply to Lindaura]

Hi Laura

Thanks for reply. As with everything from the beginning nothing straightforward! "Unusual Presentation" term used from beginning.

Three years next month since original gp visit.

Sunshine helping today and getting into garden.

Hope you are still okay with Niraparib seems lots of people have fantastic response to it.

Best of luck

Janet

[Joanie12]

Hi Janet, sorry to hear about your problems. I too am on niraparib, four months now and my bp has increased and I'm now on meds for this. Month two on it I got double vision and was really concerned thinking it was now in my brain (this disease does mess with your thoughts) but turned out bp was so high and this was the problem. Also I had headache but was not overtired. Hopefully your onc will sort you outand I wish you well. Kind regards and good luck, joanie

[Hidden in reply to Joanie12]

Hi Joanie

Thanks for reply. Had eye problems (dry eyes) from start but seem to get worse with treatment.

Been on Niraparib for 11 months, but disease progressing on last CT, Onc hoped to keep Niraparib going for another few months but looking like its back to chemo.

Blood pressure back to normal ( one positive thing) already.

Lots of luck and best wishes

Janet