JAK2 Mutation - Effects and Questions

The WHO has designated ET with Jak2 is a chronic cancer. And HU is considered chemo, I notice my platelets rising over 3 years of wellness exams, and asked my primary, he sent me to hematologist, had many blood tests plus bone marrow biopsy to confirm diagnosis. Had second opinion with all lab results, including slides from BMB and concurred with diagnosis. I've been on HU for 3 years now with baby aspirin, rather take meds than have stroke or heart attack.

I found a little more information for you about Rusfentide and from what I’m understanding, it’s not a form of chemo.
It’s a therapy that mimics hepcidin. Hepcidin is a hormone that regulates how your body uses iron. It controls how much iron is available for essential body functions, like making hemoglobin and red blood cells. It also limits the amount of available iron for your body to use so your cells don’t experience iron overload.
So for PV patients it’s meant to reduce or elimate the need for phelbotomies. Because this is way out of my area I’m only writing from information I’ve read in the several articles I posted in my earlier reply for you. I have no idea if this works as a stand-alone drug or used in conjunction with other treatments.

That was encouraging that you were off the HU and your numbers were stable for a few months and your side effects disappeared. I’m sorry they’re back again. But it did show at the time the HU worked for you. Hopefully you adapt and the side effects lessen over time. I can empathize, I know how some of our meds can take the wind out of our sails. But at least we’re here and not pushing daisies up from the underside. ☺️ Hugs…

I have been on Hydrea about 10 years. I had to really experiment to find out how to take it without too many side effects. This is what has worked for me so far. I take hydrea with lunch. i need to take it with a substantial meal that has at least a few carbs and I cannot lie down for at least 4 hours after taking. maybe this will will help but maybe not.

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!

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?

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