So glad for this group. Have suffered with migraine since I was 8yo and have been treated for hypertension for over 13 years and I'm now 55. I have been diagnosed with JAK2-V617 and dNmt3A , just starting on the journey. Anyone have treatments that have been helpful? I think I'm waiting for a FISH result but my oncologist said it would take a bit. I don't see him until June. Thinking of getting a second opinion but need all results in. Open to any advice on how to decipher this process. Thanks, in advance!
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Getting a second opinion is always indicated for any serious medical condition. In the case of MPNs, it is very important that the second opinion be from a MPN Specialist. MPNs are rare disorders, and many doctors have very little experience with them. Here is a list of doctors with MPN expertise. mpnforum.com/tsr-the-list/
Headaches are a common symptom for people with MPNs; however, they can occur for other reasons. Since your migraines presumably predate your acquiring a MPN, the issue may be independent of the MPN. Migraine treatment has improved in recent years. There are more options now. I experience a different type of migraine due to the aftereffects of a brain surgery. I have had great success with a CGRP inhibitor, using Ubrelvy as a PRN when a migraine begins. The episodes are always gone within an hour. The CGRP inhibitors can be used as a PRN or on an ongoing basis for prophylaxis. If you wish to pursue this or any other option, suggest you consult a migraine/headache specialist who has this specific expertise.
You did not indicate whether the JAK2 mutation resulted in ET, PV, or MF. This does make a difference in your treatment. It is worth noting that if the JAK2 mutation is causing erythrocytosis (PV), this can cause hypertension. The hyperviscosity increases blood pressure. I was in Stage 1 hypertension until the erythrocytosis was under control. My BP returned to normal once my HCT < 45%,
Hope you get a clear diagnosis soon and treatment plan in place for all of the issues you are experiencing.
Hello and welcome! How are you doing with all this? I remember when I got diagnosed, it was a lot to take in.
It sounds like you tested positive for the JAK2 driver mutation and a secondary mutation. There are different MPNs caused by JAK2, such as Essential Thrombocythemia (ET), Polycythemia Vera (PV), and Myleofibrosis (MF). Have you received a diagnosis yet?
You mentioned you also have a secondary mutation (dNmt3A). I also have one (BCORL1) too. It's really common for MPN patients to have secondary mutations. Certain secondary mutations, like ASXL1, carry a higher risk of progression. However most secondary mutations are of "unknown clinical significance" aka it's unclear how much they impact the disease (if at all). We just had someone else asking about that mutation and people shared a lot of good info, so I'm going to link that post: healthunlocked.com/mpnvoice...
Different MPNs can have different treatments, so it's hard to talk about treatments without knowing either the disease or the symptoms you're experiencing. There are better treatments available than they're used to be.
If you can, it would be best to get connected with an MPN specialist. These are rare diseases and the average hematologist isn't going to know the most recent research and treatments. Depending on what country you live in, we might be able to help you find a list of specialists near you.
Thank you, Brightlys! I appreciate your input and will research a bit more. I will admit it is "a lot to digest". High BP/Migraine/exhaustion and itchiness are my symptoms. I have a history of pretty bad Diverticulitis but now I'm even more nervous about a flare up for fear of bleeding. My hematologist/Oncologist, is really on the ball but I worry about waiting until June to see him. I am in Massachusetts/US and I'm thinking of reaching out to Dana Farber for a second opinion. Any information/recommendation is helpful! I'm so grateful!
I can see that Hunter has already shared the MPN specialist list. Definitely a good idea to get connected with a specialist if you can.
Itchiness is common among all the MPNs. I get migraines from ET (Essential Thrombocythemia) but I only started to have them once I developed ET and my platelets started to rise. My guess is if you've had migraines since childhood that is may not be related (though if you have high blood counts I could see how that my aggravate your existing migraines).
It is a lot to digest! Take your time and remember it's a marathon, not a sprint. I'm sorry you're in the MPN club, but the good news is you're not alone. There's a lot of knowledgeable people in these forums, so don't be afraid to ask questions.
Another good thing about the forum information (again and always, thank you) is that once you have digested the relevant areas that apply to yourself you will be fore armed with questions to ask at your next meeting.Might be an idea to write them down and also any symptom you also have but may be you thought trivial to your case.
I have Jak2 & ET and had dizziness, loss of eye focus, brain fog and heart rumbling. Prior to my diagnosis, when I also described pains (on a cramp level) in various muscles that occur randomly at any time, night or day, that triggered a response from my GP.
Thank you for your insite. I really appreciate everyone here and their experiences! You reminded me when I had COVID and actually thought I was going to die, with the fever of 105 for six days. My primary wouldn't put me on Paxlovid (before the MPN Dx) Now she sees it differently. I told her I can't go through that again. The dillarium and charlie horses were excrutiating and then it turned into pneumonia. I already feel as though I have some more answers on how to tackle this. Thank you!!
when I was diagnosed with ET Jak2 I already had Sjögren’s syndrome . In addition to ET I was told I had Antiphospholipid syndrome sometimes called Hughes syndrome after the doctor who recognised it as a syndrome .
The reason I mention this is because I had had symptoms , lots
visual disturbances loss of speech dizzyness brain fog etc etc that could have been attributed to migraines,but only in the years I now know I had raised platelets but also Hughes syndrome which is rarely looked for but can be responsible for many conditions associated with sticky blood .
All I know is that since starting Clopidigrel these symptoms are greatly improved or all but gone . I still occasionally get a sharp pain in my head and an ache behind my ears which seems to have gone along with visual disturbances in the past , Hughes syndrome is often treated with a warfarin type drug .
My thinking maybe sticky blood has caused the migraines could be a huge positive as treatment like blood thinners / anti platelet may resolve many issues for you . If this seems simplistic for a condition you have lived with so long I apologise but look up Hughes Syndrome very interesting L
I have to tell you, my migraines have been different. Of course was told the usual of hormone changes/menopause etc. So having more answers with a treatment plan would be so helpful. i think the doctors really have to be open and listening! I look forward to being able to manage this. How often are the bone marrow aspirations/biopsy done? Just trying to mentally prep for all of this! Wherever it takes us.
Morning Thanks for reply I still think you should read about Hughes Syndrome just from an interest point of view . If you feel inclined , my haematologist showed no interest at all so am not sure if that means many people are found to have it or having positive tests don’t necessarily indicate you have the syndrome . For me adjusting to actually having a diagnosis after years of symptoms I realise now has been difficult .
adjusting to fatigue now with a reason is all harder than I realised . I have always been good at working to get better after various health issues i am still finding that hard . Listening to very positive attitudes on this site and seeing the very healthy looking bunch at the forum in London my first last year was also a boost . L
Thanks for reaching out. I was only diagnosed a few months ago. I don't go for another blood test till the 29th. I will post how it goes. There aren't a lot of MPN specialists here in the Southern part of the US. The biopsy ( WHICH THEY BOTCHED) SHOWED it leaning toward MYLO Fibrosis and not Et. I don't have much time in as to treatment for this . I quit my hydroxurea several weeks ago and my platelets are ip to 650 thousand. Still it's down from over a million. It's a strange thing we have. I will let everyone know my progress
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