Jakafi: When did it relieve your itch?

[TwinMom88]

Hi all - for those on Jakafi w/ OV who felt some itch relief, how long did it take?

I was diagnosed 5 mg (2x daily) but noticed no change to itch after 1 month, so was then upped to 10 mg (2x daily). After +1 month on that higher dose, still no relief (though noted constipation).

Am I giving up too soon? Wondering when some "got their life back" ... and of course, other methods / solutions are welcome as I've been perusing through other posts.

Thanks in advance!

[S031251]

Itch disappeared after one week on 2 x 10mg daily - I hope you get relief soon

[grandpa101]

I am on 25mg (2 times daily) itch is now verry rare

[ainslie]

It varies, 5mg start is unusually low, 10mg twice daily is normal start dose but 60% of patients need more than 10mg twice daily. You don’t mention what your counts are or if it’s PV you have. If your counts don’t need more Rux then that’s a bit trickier. In my case I needed 20+17.5 of Rux to almost eliminate itch, prior to that I did daily UVB phototherapy which worked well but not as well as Rux. I have PV

[TwinMom88 in reply to ainslie]

Thanks for this - I'm going to start by trying tanning beds (there are still a few standing around me) but also try the Beta Alanine based on a few other posts I read... I'm desperate!

Re: the Jakafi -- my Dr. let me know the 5mg and 10mg were low doses, which was why he was OK giving to me purely for the itch. I have PV (typo in original post, apologies!), JAK2 positive, but am considered "low risk". I'm a 35 y/o female (was diagnosed at 33) and my counts are still under <1M (high 700Ks). Dr. said if there's no itch relief from the Jakafi, I should stop taking it because I'll inevitably need the drug later in life/when my counts increase, and he doesn't want me to build a resistance before that time comes.

I just wasn't sure if I should be trying the Jakafi for a bit longer than 1 month. I gave up and can say I truly feel no difference.

[ainslie in reply to TwinMom88]

the medical UVB phototherapy is usually only narrow band 310NM which is allegidly the safest band of UVB, wheras sunbeds as far as I am aware are the full spectrum which is why they are allegedly dangeroes. The sun is full UVA and UVB hence more likely to cause skin cancer than medical phototherapy, you could of course try the sun for a few sessions it gives the same result, it normally takes about 3- 4 sessions of phototherapy to assess effectiveness.. The good thing with the medical phototherapy is you can adjust the dose , the idea is to expose yourself to the minimum UVB to do the job. If you want more info on that feel free to ask me , I did Phototherapy for about 10 years daily but very low dose. I am a bit sceptical about your doc not wanting to give you Rux now incase you build a resisitance to it so it wont work later. For MF it can stop working after about 3 years for some but to date I have never heard of it losing effectiveness with PV , Dr V told me same about a year ago and he was Dr Rux. I have been on it 6 years. Trying Rux for just one month is not likely to show anything, almost everyone who gets the right dose of Rux will reduce and most likely stop itch. I am not implying you should or shouldnt be on meds but from what you write I dont think your doc knows much about Rux. It maybe worth seeing a MPN expert to get set in the right direction and if poss see that MPN expert from time to time on your MPN journey to keep you and your local haem going in the right direction.

[TwinMom88 in reply to ainslie]

Thanks for the insight on phototherapy. It’s funny chatting about cynicism re: doctors — I had a derm recommend the sun beds and I found that odd. He countered it by telling me where to protect and how, said I’d be fine so long as I did them in moderation… I just found it odd and I still haven’t pulled the trigger because my gut says it’s foolish.

Re: the Rux… I do have an MPN expert on hand, fortunately, and he was who suggested it when my regular Hem said he normally doesn’t prescribe anything for itch (regular Hem is who talked about building resistance). He also admits he doesn’t have any patients my demographic, which is why he referred me to the MPN expert. That expert also deems me low risk, doesn’t think I need to be on the Rux for anything other than trying to combat my itch (for now), but I’m going to talk to him about it again when I see him because he takes the itch more seriously than my regular Hem.

In the meantime, trying the BA and hoping I can avoid introducing anything else.

Appreciate your attention to my post, truly!

[Bobadog]

Hi there,

I used Eurax cream ,applied locally ,and it was very effective with relieving the itching,

(Amazon purchase)

Good luck

Bobbie

[Otterfield]

I understand the desperation - was drawing blood as I just had to scratch. I can't remember exactly how long it took, but Ruxolitinib definitely reduced my itching within weeks. The itching returned quickly when I had to come off it before my transplant.

If I were you I would avoid tanning beds because Ruxolitinib affects your immunity. Good luck.