JAK2 Mutation - Effects and Questions

I believe that no two peoples cases are the same and as the JAK2 mutation is rare, doctors are treating patients on an as needed basis. In my case, my platelet count never reached 700. However, I've been seen at the same medical practice for my entire adult life (in my 60's). My doctors felt that the steady rise (platelet count was always well within normal range) was enough cause for concern that they performed the DNA analyses. Immediately after the positve JAK2 test result I was prescribed 500 mg Hydrea daily along with a low dose aspirin daily. Everyone here will have a sightly different journey...you're not missing anything, you're just on your own journey. I hope it's a long and uneventful one! 😉

Thank you.

Interesting that Dr did a DNA analysis. I had a bunch of blood tests and a bone marrow biopsy and aspiration. I also have ET with Jak2 and take HU plus baby aspirin

I am talking 2 days 1000 and 1 day 500....
No side effects

Hi, welcome to the “scary” club. I’ve had ET for a few months now, but was diagnosed with JAK2 positive gene mutation last week. My hematologist said not to look it up online, as there’s a lot of scary stuff out there. Ha ha. But if I do, keep in mind a lot of it doesn’t apply to me. He said I do not have Cancer with a big C.
At this point in time, I am taking an 81 mg baby aspirin, and two nattokknese daily. We are all different, and I just had more blood drawn this week as he tries to learn if my bone marrow is releasing immature platelets, or if my liver is not recycling the old ones as timely as it should.
Hang in there! I have not told many people as you know they’ll look it up.
This is a good forum. Glad to not be alone.

I recently got diagnosed with PV Jak2 positive, thrombosis. I have had 2 phlebotomies and so far bw normal. My spleen a little enlarged and they found a mass on liver. Hematologist (after many test) said I do not have Budd-chari, my ports are patient (hope I say this correct) my portal veins live to heart to spleen have really weird curves in them and she said 95% positive I was born genetically like that and the mass is a older blood clot. They say this is not hereditary but I recall my aunt and my mom saying the had this when I was younger. My mom died of a stroke and aunt during pandemic. My daughter 23 has high rbc and is going to be checked for it. She is a frequent blood donor. My question is has anyone been Jak2 positive then had normal blood work for awhile and got the Jak2 test again? Many people in a group i am in said no. Why? If not enough is known of this disorder why not keep testing the Jak2 mutation for changes. Thank you God Bless

Hi, I have t seen anyone on this site mention a repeat JAK2 test. I think it’s very accurate and also a very expensive test even with insurance. It’s normal for your bw to be good after the first few phlebotomies. What happens after they get it down is what’s important. It took 7 months of phlebotomies and different dosages of Hydroxyurea to get mine stabilized. I’m hoping it stays that way. Good luck!

I have been diagnosed with PV Jak 2 mutation, 2 years ago this month, started off with blood letting then moved on to Hydrea which doesn't at all agree with me. Bottom line is I am now on a reduced dose of Hydrea..3 days per week instead of 7 days & blood letting only if my HCT is over 45.. One monthly blood tests at the moment. With regard to your Jak 2 query, will leave that one to an expert to answer!
Don't know you or anyone else noticed today a message which popped up on this website which said 'Good news or something to that effect for PV sufferers!
There was a link underneath which I clicked on, it brought up a Registration option, but the drop down menu indicated that it was applicable to only to Medical Personnel! Link flew off the screen, couldn't retrieve it.
If for Medical only, due to the fact that I have that condition, I got a let down when I saw I couldn't be party to the good news! Just wonder🤔

Hi @mags17 Unfortunately there is a professional registration necessary to get into the Medscape…however, I found a way for you to be party to the good news. ☺️

Here are some links to the medication referred to for the treatment of Polycythemia Vera. It’s still in trial testing but showing favorable results!
Rusfertide:
Info about ongoing testing and results
https://www.onclive.com/view/rusfertide-improves-responses-meets-primary-end-point-of-revive-trial-in-polycythemia-vera

Few more earlier articles about Rusfertide:
https://ashpublications.org/ashclinicalnews/news/5878/Rusfertide-Leads-to-Hematocrit-Control-in-Patients

How are you feeling now that you’re down to HU 3 times per week? Experiencing fewer side effects?

Many thanks your are really helpful for sharing this link.
Just wondering if Rusfentide is a form of chemoteraphy🤔
So glad to have had reduction in Hydrea, although I feel exhausted at times & my hair is still falling out in strands at a time.
Just a bit of interesting info!! On 18th March this year, I had a bruised muscle on r/h side. I was prescribed a very strong painkiller for 6 weeks, dreadful side effects from it so much so my stomach could only take water or tea. Had to put Hydrea aside + all meds with the exception of warfarin, for a few weeks. Had just started back on hydrea when my Haematology Clinic appointment was due. Lo & behold all my blood levels were within the normal range! Dr didn't renew my prescription on that account. 4 weeks later my next appointment arose, again blood levels ok, so roughly 2 months without any med or blood letting. 3rd visit Platelets were elevated, back on hydrea again 3days per week. During the off med period, my energy had improved tremendously, my hair ceased to fall out! But now back to square one even on 3 Hydrea in the week. I got a temporary reprieve from meds so perhaps might give other PV positive ppl a bit of a lift, a little miracle took place!