Update

[shiftzz]

I was diagnosed some 11 years ago.

My numbers here high

WBC 12.7

Hb 18.2

HCT 0.614

Platelets 1143

Neuts 9.59

You can imagine that I felt rough

I was placed on aspirin , Hydroxy, 1500 per day and venesections.

They struggles to get my numbers down, so in 2017 they decided to prescribe Pega. 135 every week, eventually they reduced the hydroxy.

Pega took time to have any effect, but it 2019 I saw some benefit. My numbers became stable and I was off hydroxy.

I had my last venesection in 2019,

During this time I have a couple fo JAK2 tests and even thought I was low in mutation levels allele burden it was about 2% and the last allele burden test showed a negative level.

I was then asked tom reduce my pega to one 135 every two weeks.

Last week, my consultant was very happy, and after the next JAK2 test etc she intends to reduce my Pega to one 135 every 3 weeks.

Its been a long journey, but I still have brain for and am tired, but pega every three weeks make life easier.

My last results my HCT 0.45

[ainslie]

congratulations 👍, this demonstrates Peg etc can take a while to kick to max effectiveness

[hunter5582]

That is great news. Glad to hear the PEG has worked so well for you.

[AlyW]

Those are good results for you- best wishes

[Luthorville]

It sounds like you had a fabulous doctor who put you on these drugs earlier than most. Very impressive. What a wonderful outcome. Thank you so much for sharing your story.

[Meatloaf9]

Congrats to you. Sounds like it has been a long trial but you have made tremendous progress. Hoping it continues indefinitely for you. Keep us posted. Best to you

[EPguy]

That is 8 years to get to not-detected. A great example of patience paying off. Wishing you extra comfort on the lower dose.