Been on healthunlock for sometime but haven’t posted. Recently put on Jakafi for pre PV. would like he hear from others.

[Normangirl]

New to Jakafi

[Aneliv9]

What is pre PV?

[Normangirl in reply to Aneliv9]

i was told ET with possible PV markers. not exactly sure what that means.

[Aneliv9 in reply to Normangirl]

What are these PV markers?

[Normangirl in reply to Aneliv9]

Do not know. Have to ask at next appointment.

[Cja1956]

This disease can be very confusing. My previous hematologist diagnosed me with Et jak 2 in 2008, then said I had changed to PV some years later. In 2016, my platelets kept rising and I became anemic. He kept trying different medications and nothing was working. I finally found an Mpn specialist and she did another BMB and said I never had PV, but I had progressed to MF intermediate 1. I had brought her my records from the prior 6 months and my original diagnosis. But I’ve never heard of pre-PV. What does that mean?

[Normangirl in reply to Cja1956]

So sorry. i mis,spoke. MPN specialist said et with PV markers. New to this and very confusing. I will ask for clarification on next visit.

[Cja1956 in reply to Normangirl]

No need to apologize. When I asked my previous hematologist to explain it to me, he said sometimes it looks like ET and sometimes it looks like PV, and that it just means my bone marrow is very active. I just think he reached the peak of his knowledge of MPNs. This site gave me the courage to seek a second opinion and it was the best thing I ever did.

[hunter5582]

I have never heard of anything called Pre-PV. There is something called masked PV, where it looks like ET but really is PV. It is also possible for ET to progress into PV, which is possibly what your diagnosis actually is. The possible PV markers are likely related to erythrocytes, possibly low erythropoietin and low iron, or maybe something noted on your BMB. Suggest getting the doc to explain exactly what your status is.

Glad to hear you were able to access Jakafi. Many people are not able to until they fail on another drug like hydroxyurea. Jakafi is much more effective at controlling PV symptoms like pruritis. Many people do quite well on it.

I am having success with Pegasys to treat PV. I have been very pleased with my response to it.

All the best to you.

[Normangirl in reply to hunter5582]

I probably misspoke. Saw an MPN specialist for first time. My original Hematologist had prescribed HU. I did not tolerate and he said no other option. I found an MPN specialist near enough to drive. He took a lot of time explaining things. I had been diagnosed with ET 2 years previous. He had looked at all records including results of previous BMB and said he saw possible PV markers. Prescribed Jakafi. Have been on Jakafi for 10 days and already feel much better.. Will have first blood draw at 2 week interval. Did not mean to be confusing, just looking for info from people on Jakafi. I’m new to this posting process and still learning. Have read many of your postings and find them very helpful, When I talk to him again will ask for clarification. tried to take notes on all he said. He spent about 2 hours with me.

[Aneliv9 in reply to Normangirl]

Do you have he jak2 mutation?

[Normangirl in reply to Aneliv9]

Yes, JAK2 V617F

[Paul_1971]

I have PV and in Jakafi, It seems to work well for me keeping my symptoms well under control.