Ruxolitnib and bad skin

[JP1952]

Has anybody on Rux experienced a deterioration in their facial skin. 9 months in I am gradually acquiring spots and blemishes As in a cluster of spots between my eyebrows and more scattered over my face and red soreness on either side of my nose. I've always used a moisturizer and rarely where make up and only had bad skin in adolescence.

[socrates_8]

Hi JP...

My name is Steve, from Oz...

I noted that you were previously taking HU, are you still taking it w/ the Rux', or just the Rux' now?

There seems to be a wealth of information to suggest that skin lesions are commonplace w/ HU, (I can provide academic articles if required)

However, another problem that many of us MPNers face is that of being deficient in Vitamin 'D', have you had that checked lately?

I have been on Rux' for 5 years now, & I have few skin complaints really... I am 63yo JP so somewhat a similar vintage to yourself...

Vitamin D supplements tend to work for me, but definitely run it past your medical team first ok?

Best wishes

Steve

[JP1952 in reply to socrates_8]

Hi Steve,Thank you for your response. Yes you are right I was on HU for 2 years, quite a high dose towards the end , 1,500 mg per day. I tolerated it reasonably well but it did nothing for the pruritus. I was fortunate to change to Rux because I am participating in the Mithridate trial and got very lucky to be randomised to Rux. Rux has sorted the pruritus but I have gained weight and now skin problems. Besides the facial problems I have a referral for a mole like lesion on my back. Regarding vitamin D, although I get copies of my blood reports vitamin D is not mentioned. My haemo has told me to take no supplements due to the trial, but I'll keep him informed of this latest development.

[EPguy in reply to JP1952]

Vit D is a separate test, It's no longer standard in the US as I think it's expensive. I did get one after my MPN Dx only because I asked.

[ConniesDad]

Absolutely yes and almost exactly as you describe. I stopped the ruxolitinib at the end of May and my skin is virtually clear now.

Do be aware that ruxolitinib can leave you more susceptible to skin cancer too so ensure you cover up and use sunscreen and a hat. I did wonder whether it was the ruxolitinib causing the problem with my skin or the constant use of oily sunscreen but as I said, within a month of stopping ruxolitinib it has cleared up completely. Make sure you discuss your medication with your consultant before making changes, especially ruxolitinib as you can become very unwell if for example you stopped taking ruxolitinib suddenly

[JP1952 in reply to ConniesDad]

Hi ConniesDad,Thank you for your response. I have also wondered whether it's the factor 50 but having used no sun screen as a child and always outdoors, open air swimming baths, etc, I have been vigilant as an adult/parent to respect the sun. As I just responded to socrates_8 I am also having a lesion on my back investigated.

To stop taking Rux isn't an option at the moment because because I am participating in the Mithridate trial and have committed to 3 years although obviously I could stop the trial if it was detrimental to me. The Rux has also cured my pruritus and I cannot bear the thought of going back to that.

Thanks for confirming you had the same problems, I shall definitely mention it to my haemo because obviously the trial need to know any side effects.

Could I just ask you what medication are you now taking and did you ever have any itching?

[ConniesDad in reply to JP1952]

I stopped the ruxolitinib to undergo a stem cell transplant. I am on loads of drugs now but they are antibiotics antivirals anti fungal and anti rejection drugs so not particularly relevant

[ainslie]

I have been on Rux 5 years and my skin is normal, I have never heard of that with Rux, maybe worth checking with a dermatologist in case it’s something else