Jakafi and Peripheral Neuropathy (PN)

[Ted Morange]

Have been on a total of 10-20mg Jakafi daily for two (2) years, and the last few weeks, my previously mild peripheral neuropathy (PN) symptoms have gotten much worse. My feet and ankles are stiff, tingly, and numb and even my calves can get very uncomfortable as well. Although I can still walk, sometimes I have to forcibly appear to walk normally.
Jakafi has seemed to maintain my spleen at a lower (size) level after I took 1500mg HU for a few months. It has even seemed to shrink it further. I think it's reduced my night sweats, but that's it (that's a lot). For example, no bone pain relief that I know of.

I just found a handful of sites that indicate PN can be a side effect of Jakafi.

University of Pittsburgh http://www.upmc.com/patients-visitors/education/cancer-chemo/Pages/ruxolitinib.aspx
Factmed.com (FDA reports) http://www.upmc.com/patients-visitors/education/cancer-chemo/Pages/ruxolitinib.aspx
Leukemia and Lymphoma Society https://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mpd/pdf/idiopathicmyelofibrosis.pdf

The Incyte.com Jakafi insert page, dated 12/14, and upon which I relied, does not seem to contain the work neuropathy.
http://www.incyte.com/sites/default/files/Jakafi_PI.pdf?time=20150322095254

I have contacted my hem.

Does anyone have any suggestions?

Ted, 71yo, PV '99, PPMF '13, 10mg Jakafi 2x/day, 81mg aspirin 1x/day, 300mg Neurontin 12x/day, transitioning to 75mg Lyrica 3x/day, but not successful so far. I take the Lyrica first thing in the morning and end up having to take 900mg Neurontin to get symptom relief.

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[Ted Morange]

I need to make several corrections.

1. Here's the factmed.com site: http://factmed.com/study-JAKAFI-causing-NEUROPATHY%20PERIPHERAL.php
2. Leukemia/Lymphoma Society does not say Jakafi has PN as a side effect. It's just a side effect of treating MF.

Please bring any other errors in my post to my attention, as it has to be correct.
I want to comment that now I feel much better, a few hours after my initial post. My internist has me transitioning to 75mg Lyrica 3x/day, but perhaps it takes a number of days to take effect, because it seems to have no effect on me today, and to feel undistracted by my PN symptoms, I'm going to skip my mid-day Lyrica dose and carry out the day on a dose of three (3) 300mg Neurontin, 4x today, for a total of 12-300mg capsules today, perhaps finishing the day with a 75mg Lyrica.
I now see that I over-reacted to the factmed.com site. Only four (4) patients taking Jakafi have reported a PN to the FDA, not 300 or more. To me, this is just noise, with the greatest of respect to those patients. I now think that it's questionable whether my Jakafi has caused my PN.

Yesterday, my PN symptoms varied a lot. Mid-afternoon, they got a lot worse, especially in my calves but I was able to knock them down with my oxycodone IR. Last night, I was lying in my electric bed, legs slightly elevated and my calves hardly had any discomfort at all. I could massage my calves, no problem. It was my feet/ankles that have had mild PN symptoms for a few years now that have become consistently much worse, with a lot of stiffness.

Any comments? I know that I have to be more considered in my posts from now on.

Regards,
Ted