New to PV and MPN Voice

[C_Anne_Orange]

I was recently diagnosed with PV, August 2021 after a routine blood test several months previously at my Primary Care Doctor. It has been a shock but luckily I found an MPN specialist.at a University Medical Center near me. Since August, I have had 4 therapeutic phlebotomies, started on low dose aspirin and about 3 weeks ago started on HU. My hematocrit, RBC and platelets have all been lowered with all but platelets within normal range now. Another blood test this coming week. It is an adjustment but I feel like I am getting good care. I have done a ton of reading and was so happy to find MPN Voice. It is an extremely helpful resource and I check it every day to learn more. Thanks to all of you who share your experiences, support and advice.

[hunter5582]

Hello and welcome to the forum. Glad that you found your way here. This is a great place to get information and support.

You are quite fortunate to have started treatment with a MPN Specialist on your care team. It is critical to receiving optimal MPN care. We are each different in how out MPNs present and in how we respond to treatment options.

We are fortunate that there are emerging treatments for PV and the other MPNs. Jakafi is already available. Rusfertide is in clinical trials. It will hopefully be an alternative to phlebotomies and the resulting iron deficiency. Besremi should soon be FDA approved. Pegasys is available off-label in the USA. The PEGylated interferons offer people with PV the best opportunity for effective treatment a reduced risk of progression. Our treatment options really are steadily improving.

Hope things continue to go well for you.

[C_Anne_Orange in reply to hunter5582]

Thank you for your welcome and your detailed response. It’s all new to me so your information is very much appreciated!

[Mazcd Partner MPNVoice]

Hello and welcome to our forum, very glad that you have found us. And good news also about your blood counts. It can be daunting when you are newly diagnosed, there is so much to understand, but take your time to read as much as you can and remember, we are all here to help and support you. With best wishes, Maz

[C_Anne_Orange in reply to Mazcd]

Thank you for your welcome and for all you do in supporting this forum and all of us!

[azaelea]

Hello and welcome! I know you will find lots of information and companionship on this forum, as I have over the last 3 years since my diagnosis with ET JAK 2+. Kind regards, Fran

[C_Anne_Orange in reply to azaelea]

Thank you Fran. I’m JAK 2+ as well, and learning all of this new vocabulary. Appreciate your welcome.

[Cakeface]

WelcomeI have PV too. Diagnosed 5 years ago when I was 56 and currently on the same meds as you.

There's always someone to talk to on here and people like Hunter are great with knowledge, experience and advice.

Hope you stay well

[C_Anne_Orange in reply to Cakeface]

Thank you for the welcome. I was so happy to find this site and really appreciate your response. I have lots to learn and feel very fortunate to have all of you available for questions and updates! THANK YOU.