Polycythemia Vera or Essential Thrombocythemia ?

Thank you for clarifying. I’m new to all this and overwhelmed actually.

Well surprised no lab work was ordered but apparently her J2 mutation was positive so they felt she needed to go on hydrox...I'm glad she's handling that dose of hydrox....I will say it's my experience that lab work is done at every appointment or the day before. That's how they tell how effective the medication is and lab (medication) side effects.

Wow that is an extremely high amount to start on but I can only assume it was to get her platelets out of that very high danger zone and avoid throwing a clot. Pretty sure she will go to one a day and monitor for about two months. I began with platelets just over 800 and 500 mg daily. After one month went down to 200. Went to 5X a week and after about 7 months got the dosage straight on 3X a week. I’m holding steady for almost a year on this dosage. My platelets are about 480 and my oncologist is fine as long as I stay under 600. High doses gave me some nasty side effects such as hair loss, swollen gums, extreme sensitivity to sun and small brown spots on my skin. I’m hoping I can hold steady on this dosage. I am JAK2 positive and have Polycythemia Vera, diagnosed 1/23.

Can someone please tell me the difference between PV & ET? Different symptoms? Can one turn into the other?

I was diagnosed with ET about 6 months ago since my platelet count was high & I have the JAK2 mutation. Never had a biopsy. HU (500once a day), with no side effects, has brought my platelet level to the normal level. I'm new to this & need to learn more. Many thanks for all these very informative posts & helpful posts..

Hi @nyjean. Hopefully I can answer your question about PV and ET. Those two conditions, along with Myelofibrosis and several other blood conditions are part of a group of blood disorders referred to as Myeloproliferative neoplasms (MPN) sometimes called Myeloproliferative syndromes. Either term applies.

These blood conditions are often, but not always, spawned by the mutation of the JAK2 gene which interferes with the normal production of blood cells in the marrow.

Essential thrombocythemia, which is your diagnosis, is an over production of platelets. Polycythemia Vera is the over production of red blood cells. Both can have serious side effects if proliferation of excess cells aren’t controlled.

HU is one of several drugs available to help reduce the level of excess cells in both conditions. As mentioned, there are other MPNs besides PV and ET. Those may be treated individually with other medications.

To answer your question. PV doesn’t turn into ET or vice versa. However, it is possible to develop more than one MPN at a time. I know of at least one member who has both PV and ET.

I think the best way to get a grasp of what is happening and maybe answer your questions better than I can would be to give you some links to some good informational articles. These are my go-to favorites for info on MPNs

~From Healthline.com and Verywellhealth.com
https://www.healthline.com/health/cancer/myeloproliferative-disorders
~~~~~~~
https://www.verywellhealth.com/myeloproliferative-disorders-5209654
This is a good article which explains about the JAK2 mutation and its impact on blood cell development.
Also from Verywellhealth.com
https://www.verywellhealth.com/jak2-mutation-5217909
It sounds as though you’re having good success with taking the HU to get your platelet level back in the normal range. You mentioned not having a bone marrow biopsy. A biopsy isn’t necessary to diagnose an MPN, however hematologists may use this important test as a baseline to make sure the bone marrow is healthy and capable of producing healthy blood products. As long as you’re being monitored on a routine basis and having good success with the HU your doctor may not feel the need of a biopsy. So no worries. ☺️

Read of the material I posted and let me know if you need any clarification, ok?

I have both PV and ET I have had issues with my right hand. I will post pictures and I’m wondering if this is from my blood disorder? Thanks Pam

Hi @blondie65, Yikes. That swelling looks painful! Is this a recent development for you? Considering that you have PV and ET, both having the potential to form blood clots, my suggestion is to have your hand checked by your doctor ASAP. If for no other reason than to make sure you’re not having circulation problems or excess fluid retention.
Have you changed medications lately?

I went to the ER and they said it was a hematoma and wrapped ace bandage around my hand. It got worse I called my hematologist office and they reviewed my labs from the ER. Had me come in for a phlebotomy and did not see a Dr. Gave me an appointment for this Thursday so they can recheck my blood and adjust my medication which I take one baby aspirin and one 500 hydroxyurea.I think my hand issues are related to my blood disorder.

You may be right that this is all related to your blood disorders. Having two blood conditions with the potential for blood clotting such PV with too many red blood cells and ET with elevated platelets bears a closer look and reevaluation.
I’m glad you went in to the ER…that set the ball rolling today to get you into your hematologist's office for a quick phlebotomy. Your red blood count must have been elevated.
Will you let me know what you find out Thursday with your next appointment? Was this your first phlebotomy?

I will definitely let you know how I make out on Thursday. I have been getting phlebotomy’s once a month since last December.