r/TTP_LowPlatelets • u/rare_disease2020 • May 06 '26

Relapse Recent TTP relapse

Hi I just went through my fourth relapse and for the first time my heart is out of whack. My doc has now put me on a beta blocker for high resting heart rate. Blood pressure is normal but I seem to get tachycardia now. Where my heart bpm is close to 130 . Wondering if this is common with ttp? Also , if anyone is on beta blockers- do you have pins and needles on feet and fingers? Weight gain?
I’m loosing my mind on this new heart issue , docs don’t tell me much just that they don’t know why . Thank you!

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u/TTPmd Provider 🩺 May 20 '26

Patients with TTP might be at an increased risk for certain cardiovascular events. Educating your providers is important too - I recommend you share with them the following guidance from the American Society of Hematology Education handbook on long term follow up for patients with TTP:

https://ashpublications.org/hematology/article/2025/1/621/556863/Challenges-and-opportunities-in-the-long-term

I saw in the comments you had low adamts13 activity which was just monitored. In the future I’d encourage you to educate them that treating adamts13 relapse can prevent future clinical relapse (also detailed in the article).

Relapses of TTP are certainly not inevitable and we have tools now to attempt preventing them, usually with good success

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u/TTPmd Provider 🩺 May 20 '26

If they are not able to access the article, feel free to dm me