Very HAPPY 😊

[Vtr1000]

Started with ET Jak2 now have PV. I started Pegasys November last year on 45mcg weekly with venesections various times, now running at every 6 weeks . Pegasys was increased to 90mcg weekly. Finally my platelets dropped to 411 & HCT 0.451 (15/07 before venesection). Today I had a telephone consult and my platelets have dropped again to 388 & HCT 0.444. I am continuing on 90mcg of Pegasys weekly and going to try venesections every 8 weeks. This is the first time in about 5 years my platelets have been in range, to hear the results from my fbc on 29/07 has confirmed my platelets are dropping was fantastic. Now need to work on the HCT and hopefully reduce the venesections.🙂🙂🙂

[EPguy]

Great to see the INF working. If (important qualifier) your HCT continues at the current rate, you may not need the venesection (8 weeks like this would put you at 43) Will you get another blood count before the venesection?

[Vtr1000 in reply to EPguy]

Hi EPguy, yes I always have a fbc before a venesection.

[EPguy in reply to Vtr1000]

Sort of silly question on my part, fbc is of course needed to know how much to do on the ven. Wishing you good continued progress on the PEG.

[hunter5582]

Good news! Looks like you are moving towards successful trEatment and a higher quality of life. Hopefully you can eventually eliminate the venesections and let your iron levels return closer to normal while maintaining a CHR.

All the best.

[ainslie]

It’s nice to hear your Very Happy, great heading for a post, often the Peg will work progressively and over time you may need less venisections and possibly less Peg. It can for some take months or years to achieve that, there is also the option to increase dose of Peg for a while (if tolerable) if it takes too long to reduce/eliminate venisections.

[Carthe]

hi can I ask what your platelet where when you were diagnosed? And what the trend was?

[Vtr1000 in reply to Carthe]

Hi Carthe, I started with my platelets at 597 and they went up to 897 and my hct was .535 before I started Pegasys.

[Carthe]

thanks for replying - why did they change the diagnosis? Also did you have symptoms etc? Thank you 🙏🏻

[Vtr1000 in reply to Carthe]

Hi Carthe, I started with ET Jak2+ in 2019 as I only had high platelets. Just under 2 years later my hct started rising. This then changed me from ET to PV.

[Carthe]

do you mind me asking your age… I’m 46 so fairly nervous about the prospect of the limited future with this

[Vtr1000 in reply to Carthe]

I'll soon be 46, in the beginning I was like you and worried about the future. However, using this forum made me realize it's not the end, just a different approach.

[Carthe]

makes sense and why did your diagnosis change? I didn’t think they put you on medication until you are 60 plus? X

[Vtr1000 in reply to Carthe]

I started with only high platelets (ET) and after about 2 years my haematocrit started increasing (PV). I’m on medication because I have the pleasure of another condition which puts me at a higher risk. Whether you’re on meds or not it’s a very individual thing with various factors taken into consideration.