Good news on mutant allele reduction on Jakafi.

[Sewingtime]

Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching, my hematologist moved me on to Jakafi/ruxolitinib. Itching ceased almost overnight.

I see my hematologist every 3 months now to monitor my counts. He has focused (rightly) on getting the counts as close as possible to normal to avoid future thrombosis. While that has been my interest too, I have also been interested to read on this forum about how interferons such as Besremi might actually help stop disease progression, whereas (as I understand it) Jakafi merely inhibits the gene from doing its bad stuff (halts rather than reverses progression). I asked if we could do another JAK2 mutant quantification test, given it has been 2 years since the first one. My thought was that if my % was broadly the same, I might ask again about trying Besremi, as 60% struck me as high.

Great news: I am now at 25% mutant allele frequency! Of course, I have no idea of Jakafi is responsible for this pretty dramatic reduction, but it seems likely, doesn't it? Keen to hear others' thoughts/experiences.

[EPguy]

It's quite likely the Jakafi is the reason for your reductions. I have posted on this, for example:

healthunlocked.com/mpnvoice...

It's the most recent trials that are showing this result clearly. My Dr, who has some preference for Rux, said in effect "I told you so" on its benefits. Rux can be less effective with the higher starting levels, but your example shows it can still work great.

I had good reductions on IFN but had to quit and now look fwd to continued reductions on Rux. Rux also can help with some autoimmune conditions, as discussed in prior posts.

--

Is there a specific reason your Dr selected Rux over IFN?

[Sewingtime in reply to EPguy]

Thanks so much for sharing your previous post! I think my hematologist opted for Jakafi because of its known efficacy in reducing itching, which I was really suffering with (in fact I'd had it badly for several months before my diagnosis).

[soomoo in reply to Sewingtime]

Hi, I've been on rux for 3 years. Previously on hydrea, anagrelide and peg. My itching was horrendous, especially after showering. The ruxulitinib was a game changer. If I have ever missed a dose the itching briefly rears its ugly head, so aware its still evident. But, know its doing its job.

[mhos61]

That’s great news, more than 50% reduction. You must be delighted.

[Sewingtime in reply to mhos61]

I am, thank you! And hope this is positive news for all others on Jakafi, or considering it. I had missed EPGuy's previous post, but had seen a number of posts about how interferons had reduced mutant allele %, so wanted to share re. Jakafi.

[mhos61 in reply to Sewingtime]

You may find this discussion interesting, especially Claire Harrison speaking on Ruxolitinib.

google.co.uk/url?sa=t&rct=j...

[Hopetohelp in reply to mhos61]

Very helpful video

[Sewingtime in reply to mhos61]

Thanks for sharing, I just watched this!

[lizzziep]

Good news!

[Hopetohelp]

Great post and very glad to hear your allele burden reduced. Will be looking at rux should peg not work out

[ainslie]

Congratulations, it’s the Rux alright, many experts have reported same ie lowering allele, can I ask you what dose you have been on. It’s only two years, that’s quick, could be the best is yet to come

[Sewingtime in reply to ainslie]

Thank you! I started on a higher dose, but we have settled on 5 mg in the morning and 10 mg at night. That seems to be the sweet spot for me in terms of keeping my counts fairly normal.

[ainslie in reply to Sewingtime]

fantastic, thats a low dose too, the average is much higher, I am on 20 +17.5 for my PV

[GardNerd]

This is such great news! I’m very happy for you and so glad to hear the gathering evidence that Rux can decrease the allele burden. Thanks for sharing!

[tracey13]

This is so reassuring to here your Alle burden has dropped down.

My husbands Alle burden was 63% 10 years ago. He asked his consultant if this test could be repeated he was told his bloods are fine so therefore this test isn't needed.

He's been on ruxolitnib for 4.5 years now .

It would be interesting to see if his Alle burden has dropped .

Tracey

[Sewingtime in reply to tracey13]

It would be interesting to find out, yes. I am British, but live in the U.S. now, where if you're lucky enough to have good health insurance through your employer (which I am) it is easier to get these kinds of tests done. Maybe your husband could ask again sometime soon?

[LIGEBA]

Sewingtime I really don't understand what part the allele burden plays in our disease (no one has told me I need to worry about mine increasing), but your drastic drop in such a short amount of time seems amazing! Is there a certain number that is considered acceptible?

[Sewingtime in reply to LIGEBA]

Hi LIGEBA, I don't know about an acceptable number, but opinion seems to be coalescing around the view that a higher allele burden can be associated with greater symptoms and greater risk of thrombosis and also with potential disease progression. There was some discussion and links in an earlier post from Hunter that I commented on: healthunlocked.com/mpnvoice....