Effects of count dropping

[Millielottie]

My Revolade got stopped 3 weeks ago as count had gone to 451 and more risk of a bloodclot on drug with count above400.

My count has dropped now to 341 and I'm starting to get palpitations and short of breath. Quite an anxious feeling. Also much more tired but no bruising or bleeding.

Has anyone else with Itp had these feelings.

[Gabriella28]

I have been on Revolade for over a year and sometimes feel tired but not anxious. The highest my count ever went (since diagnosis of ITP in February 2020) was 170. I was thrilled! I asked for the dose to be reduced from 75 to 50 mg/day because the drug was causing significant hair loss which I found distressing. So have been on 50 mg for about six months and feel ok but platelet count stubbornly steady around high 60’s /low 70’s. I am happy enough but really my ambition is to be drug-free. Unlikely at this low level but otherwise I feel ok. So try not to worry Millielottie x

[Millielottie in reply to Gabriella28]

Just concerned that starting to feel like this after drug has been stopped but will raise it at my next consultation.

Thanks for replying x

[Gabriella28 in reply to Millielottie]

I would have thought you would have to decrease the dose before coming off it completely? In other words come off it gradually

[Millielottie in reply to Gabriella28]

Yes they did decrease to 50mg but the count was still escalating too high so they decided to stop it.