Platelets up

Morning all. I hope you're all doing well.

I had my first follow up with my consultant last week after my diagnosis. I'm Jak2+ ET and currently on aspirin only. My platelets on my previous bloods had all been around the 600-700 mark but on this visit, they had jumped to 895. I was told that it was nothing to worry about, but in the next breath, I was told that if they go over 1000, then because of my age (45),I would probably be put on interferon. I've done some reading and can't say that I like the sound of the side effects much.

So - do you tend to find that your platelet levels have peaks and troughs and vary quite wildly, going significantly down as well as up?

And any of you who are interferon users - what is the regime and is the taking of this drug a permanent life long feature or is it shorter term to manage the platelets down and then monitor as before. I was a bit shell shocked at my platelet rise and forgot to ask.

Lastly - are the side effects as bad as I fear?

PS. I lied when I said "quick question". It took ages, and I've asked about half a dozen. 😂

3 Replies

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  • I have ET CALR+ and was on aspirin only for about 12 years - my platelets generally drifted or jumped up and down between 700 and 900 over that period.

    I was diagnosed at 47 and my haem's view was that up to 1,500 was OK while below 60 years and in absence of any other risk factors such as blood pressure, previous thrombosis etc.

    Three consecutive counts over 1,000 and turning 60 changed that and I started on Pegasys (slow release interferon) about 18 months ago. It's brought my platelets down from 1,100 to 350 quickly and without any significant side effects - I now inject just once every 4 weeks.

    We've discussed trying a break in treatment as some studies suggest permanent remission can be achieved with interferon and treatment stopped but they want to wait a bit longer before trying that - in the meantime injecting once a month isn't a bad solution.

    I'd suggest asking your haem why they want to start treatment at 1,000 not 1,500 given your age.

    We all react differently to medication but my clinic has about 40 of us successfully using Pegasys so if you do start treatment and can get that rather than regular interferon, which generally has more side effects, it is probably worth trying.

    Good luck! 😀

    Andy

  • Hi Westie71, I wouldn't worry too much at this stage about the escalation in your platelets. It may well be on your next visit to clinic they have stabilised or even reduced....they are unpredictable little blighters.

    I can't answer your question on Interferon therapy. Maybe you could ask Maz to ask Professor Harrison about any concerns that you have about Interferon therapy. Having a second opinion from an MPN Specialist should at least provide you with a balanced choice should the need occur for you to commmence treatment.

    Mary x

  • Hi Westie71,

    I was diagnosed two years ago and in that time my platelets have varied from 600 to 900. I'm not sure there is any logic to the variation - I've looked for patterns but I'm yet to find any! My consultants have told me that it's normal to have a range of levels over time. I too was told that if it gets to 1000 before I get to 50 [I'm 36] we would 'discuss' treatment options.

    Personally, if my levels get to 1000 I would want to see if they stayed that way or if they dropped again without taking medication. I wish you well and try not to worry [easier said than done, I know!] you'll probably find that your platelet levels fluctuate.

    Best wishes,

    Kat

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