Yes or no to Aspirin??

[Green1988]

My husband is 35 years old fit and healthy he has been diagnosed with ET calr type 1. The haematologist at the NHS hospital said he doesn’t need to start any medication not even Aspirin but I went to see a private haematologist and he said I should take Aspirin. I’m so confused? Is there any risks taking Aspirin can I change my anything?

[hunter5582]

The answer is that not everyone agrees on the need for aspirin in a low-risk CALR+ ET case. Some of the newer thinking is that the risk of thrombosis is so low that aspirin is not needed. Others still prefer to follow the traditional protocols which call for low-dose aspirin daily. It really is a matter of which choice the patient prefers.

[christiev]

HelloMy 25 yr old son has PMF with CalR 1. He was diagnosed 5 years ago. Initially a haematologist advised aspirin. However, a few weeks later after a referral and consultation at Guys in London (very specialist MPN team), the aspirin was immediately stopped despite v high platelets. He continues to be monitored only with no medication at all.

While no doubt all patients should have medication reviewed very specifically to them, it does seem to be the case that CalR 1 mutation comes with a significantly lower risk of clotting and aspirin is not as frequently prescribed as it is with other mutations.

Best of luck and I hope all goes well as you and your husband navigate the world of MPNs!

[Green1988 in reply to christiev]

Yes I’ve heard that team is really good. I would of love to have a consultation there but we are in Edinburgh. Not sure how that would work. It’s really frustrating when 2 different Haematologist who specialise in Mpn are giving different advice.

[gilded]

Hello I’m 78 and was recently diagnosed with CALR positive ET. I consulted a haematologist privately in the first instance who prescribed 75mg aspirin daily. After a bone marrow biopsy the consultant prescribed Pegasys interferon injected fortnightly and continuing aspirin. Now treated by NHS with same consultant. I feel fine. Hope this helps.

[Green1988 in reply to gilded]

Thank you for your reply 🙏🏾

[gilded]

PS. When diagnosed, platelets were Everest high and although still high, there has been a considerable reduction

[dbus1417]

I am in the same boat 38 yo healthy CALR type 1 - my hemo put me on aspirin but kinda lets me decide.

Sometimes I will notice if I’m bruising easier I’ll stop it for a few days and she’s ok with that. I have 3 young sons and things can get rowdy here. 😬

[Green1988 in reply to dbus1417]

Yes my husband has bruised a couple of times on his arms in the last month. It’s frustrating as both haematologists are giving different advice 🤯. It’s already hard enough finding this out and then you don’t know wether to take aspirin or not.