Rheumatological conditions and PARP treatment

[OvacomeSupport]

Hello All

I'm messaging on behalf of a member who contacted us. She has polymyositis and has been recommended a PARP inhibitor after her chemotherapy treatment for ovarian cancer.

She is wondering about the experience of managing a rheumatological condition while on PARP treatment and wondered if anyone else has any experiences to share? She appreciates everybody is different, but it would be really helpful to hear from others to help with discussions with her oncologist and rheumatologist.

She also wondered about experiences of swimming in pools when on PARPs and whether people's skin was more sensitive at all ?

Many thanks as always for your help.

Best wishes

Anna

Ovacome Support

[Lyndy2]

Hello, I have RA (diagnosed 2006) and currently on Olaparib for recurrence. I have found that Olaparib keeps my immune system dampened down, so I haven’t needed the biologic I was on prior to my recurrence. Happy to discuss with your contact if helpful xx

[Doglover1410]

don’t have a rheumatological condition but can answer the swimming on Niraparib!

I had no problems with my swims, the only thing I had on it was that my skin was more sun sensitive. Always had to have factor 50 on and ,for a sun worshipper, none of the sitting in the sun. I could manage about 10 mins before covering up or going into the shade. Hope that helps

[Nov5]

Hi, I've had real issues with muscle/joints pains since starting Olaparib. It's certainly become much worse since being on maximum dose of 600mgs daily. The only reason I'm trying to persevere is due to rising CA125 and I've been told side effects may improve in time 🤞.

However it's worth remembering everyone reacts differently and I think most ladies suffering from OC would probably agree they'd try anything to stop this beast!

[Trickysite]

I have Ehlers Danlos Syndrome and am on Olaparib after carbo taxol. I’had very heavy legs on latter but kept walking. My onc said common with Eds. Better now but have neuropathy in my legs. I can feel ok but balance affected. I keep walking with stick. One year on Olaparib. May get better with legs or not!

[OvacomeSupport Partner My Ovacome Team]

Hello Trickysite Doglover1410 Lyndy2 Nov5

Thank you so much for your very helpful replies. I will pass all this information on to our member.

Best wishes

Anna

[Laz66]

I have an “ unspecified inflammatory arthritis “ not really clear if rheumatoid or not at this stage. Am under Rheumatologist. Am on steroids and about to start Etanercept. I am on Niraparib, since April. I swim regularly, no problems.

[OvacomeSupport Partner My Ovacome Team in reply to Laz66]

Thank you very much for sharing your experience Laz66. It is so helpful and much appreciated.

Best wishes

Anna

[Angela2932]

I have ankylosing spondylitis, an inflammatory arthritis and had been being treated with Remicade prior to OC. I was told I could no longer be on such drugs, and have been on Niraparib for almost 3 years now. My arthritis symptoms have been surprisingly minimal and my rheumatologist says that chemo drugs can tamp down the immune system for quite some time. Unfortunately, the arthritis symptoms have been creeping back, but so far manageable with NSAIDs. I’ll be stopping Niraparib at the 3 year mark, but not sure if that increases my options for anti-inflammatory drugs, or not. Good luck to you!

[OvacomeSupport Partner My Ovacome Team in reply to Angela2932]

Dear Angela2932

Thank you very much for sharing your experience. I have passed your comments onto our member. We really appreciate your feedback.

Best wishes

Anna

[Alice77]

I find that my joint pain has worsened since taking Niraparib but that may be because I have been told to stop the antiinflammatories which helped me before. Sun sensitivity is an issue...I always wear factor 50 and a hat outside.