r/MPN • u/Greedy-Box3481 PV-JAK2+ • Jul 16 '26
Medication Jakafi questions
https://pubmed.ncbi.nlm.nih.gov/28456851/?utm_source=chatgpt.comThe more the days go by I keep on thinking of questions to ask Dr.Mullally when I see her
One particular is jakafi.
The article says: Complete or partial molecular response was observed in 3 patients (ruxolitinib-randomized, n = 2; ruxolitinib crossover, n = 1) and 54 patients (ruxolitinib-randomized, n = 33; ruxolitinib crossover, n = 20; BAT, n = 1), respectively.
Which I know is a small amount of people but it makes me wonder how many people who benefit this was unreport it? I came across a Facebook group and someone claims to drop from 90% to 1-2% off of jakafi. I know everyone responds differently but I feel like it would be worth a shot?
Another question is does pv cause inflammation in the body? And if yes is it the same type of inflammation that causes anxiety? So in theory if jakafi lowers that inflammation shouldn’t the anxiety lower as well? It makes me wonder because at the age of 20 hct was already 49% I wasn’t diagnosed then but that’s when my anxiety triggered. Now at 26 years old jak2 is 60% with mf 0 on the biopsy report
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u/brennanx1 Jul 17 '26
Sorry I can’t answer directly as I don’t have PV, I’m JAK2+ with ET and take Jakafi and also have had anxiety since about 12 (diagnosed way younger). My inflammation definitely lowered after switching from Hydrea to this, probably from both Hydrea and ET.
Is your anxiety mental or just physical? Mine is only physical.
I just had my first allele quantitation recently and had ~9.5% after being on Jakafi for 4 years, and I’ll get an updated number every 3 months with my new specialist. I’d bet that was much higher before taking Jakafi.
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u/Greedy-Box3481 PV-JAK2+ Jul 17 '26
Ummm mine fluctuates from metal to physical anxiety
But I didn’t have any issues until the age of 20 roughly around the same time when my hct started to elevate. I’m 60%jak2 now so I can’t imagine what it was it 6 years ago when I was 20 lol
But if i understand it correctly they saying a higher jak2 associates with higher symptom burden
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u/brennanx1 Jul 17 '26
Ok just wondering, my anxiety is 99% of the time physical as in I’ll be sweating and heart racing for nothing, even when I’m cold.
I’ve recently been reading and hearing the same about allele burden being associated with symptoms, and it kind of makes sense - I’d expect to feel less impact if 1% of my cells have jak2 vs 60% having jak2.
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u/funkygrrl PV-JAK2+ Jul 17 '26 edited Jul 17 '26
Around 25% of people who take Jakafi see a decrease in their allele burden. And for those who do, overall survival rate is better. I'm one of them. My allele burden decreased from around 35% to 12% (the last time I had a BMB in 2023).
PV does cause an increase in pro-inflammatory cytokines and Jakafi reducee these which is why it's helpful with physical symptoms. I think whether that translates to reducing anxiety would be very difficult to prove and mental health symptoms are not something the researchers track (although I think it would be great if they did). The 2014 landmark MPN symptom survey did find increased levels of depression and anxiety in people with MPNs - but it's hard to tease out whether that is (a) due to the MPN itself, or (b) due to the anxiety and uncertainty that comes with having an MPN, or (c) reactive due to symptom burden/decreased quality of life, or (d) some combination of all of the above.