Rux and skin problems

[JP1952]

Anybody else on Rux and experiencing facial problems? I have been taking Rux for over 3 years and my skin has got progressively worse. I have had lesions which thankfully are benign but I also have spots which do not go, blemishes and discolouration patches. It is getting quite upsetting and as I am seeing my haematologist next week I thought it would be a good idea to ask you guys before I mention it to him.

[MPNpatient123]

hi, yes I did almost like blisters/acne type things came up and they were so painful on my face and neck area and upper back and chest . I found creams that I were using I could not longer use as made it worse ! I got some cream prescribed from doctors which helped I think a steroid - I’ve been on rux a year and half now .. after about 6 months it did calm down a lot and most of it settle. I sometimes get flare ups if I use a different product on my skin or make up that reacts etc . I have started using L'Oreal Paris Revitalift + Hyaluronic Acid creams (day and night ) and serum and also vitamin C serum and it’s really helped my skin now and has made everything appear a lot better ! Also make sure you use daily factor 50 sun cream or cream - the L’Oréal revitalift day cream one I use has the factor 50 in as I found without using it made things worse! But make sure you put factor 50 on daily and on your neck too .

Try see a dermatologist if you can they will assess it properly and see what you need or what will make it worse ! Good luck

[hunter5582]

Given that non-melanoma skin cancers are a risk with RUX, I would not just ignore this issue. Your hematologist definitely needs to know and the skin anomalies need a proper assessment.

[IKEALover in reply to hunter5582]

What Rx is Rux?

[hunter5582 in reply to IKEALover]

RUX = Ruxolitinib AKA Jakafi

[Phil1955]

hi I’m on hydroxycarbamide and got exactly the same I’ve had two pre cancerous tags removed and I’m on a chemotherapy cream at present not great

[Flylikeabird]

Oh my gosh, yes!! Skin problems actually started with hydroxy and were much worse. One reason I switched to roux. Those went away. But my skin continues to be extra fragile, and I developed sores mainly on hands. Have been to demo and we’ve done lots of different things that work for awhile but never totally clear. Have also developed patches of discolored skin that the dermis said was probably vitiligo (I’’m white so not as obvious), but it’s weird how it only emerged it the last year. Been on run for about 2 years now.

[Flylikeabird]

Forgot to mention—i did develop acne like places on face, which demo said was rosacea. She gave me a cream that always clears it up right away.

[ainslie]

Best see a good dermatologist for a clear diagnosis. I am on high dose Rux 7 years for PV, so far no skin issues

[JP1952]

Thank you all for your input, so I'm obviously not on my own. I was discharged from dermatology after the results of the biopsies were benign which was just a short while ago but even since then my skin has got worse. Just yesterday my husband noticed a new pink blemish the size of a fingernail on the side of my face. I've always been super careful especially since the terrible itch but the dermatologist did say that I had sun damage, think that's a legacy from childhood spent outdoors with no protection in the 50s and 60s. As they are worsening I'm going to ask the haematologist if he can re refer me but I'll probably have to go through my GP.Thank you everyone.

[KLCTJC]

Acne or even folliculitis can be common side effect on Jak inhibitors. Dermatology usually can manage it. Everybody is different on what we recommend and hyperpigmentation is a whole other beast in itself. But I haven’t experienced anyone stopping their Jak inhibitor as a result of this side effect. Pending your skin type hyperpigmentation can be managed cosmetically by many things, including creams, lasers, etc. Sunscreen is very important, tinted being the best. There is lots you can do, but both can be slow to improve unless you do things like lasers, microneedling, chemical peels, etc. Cosmetic stuff can just get pricey quick. And all things for hyperpigmentation is 100% cosmetic. And like others said Rux puts you at higher risk for some skin cancers. But definitely dermatology can help.

[JP1952 in reply to KLCTJC]

Thank you. I can't see me doing anything like lasers but I'll definitely try to see a dermatologist again for advice. Am already using Cera Ve SPF 50 on my face and factor 50 sun cream on any exposed skin when I go out.

[KLCTJC in reply to JP1952]

Ask about Heliocare too. It is a supplement to help with sun protection. It is natural, made from plants. I have recommended it to a lot of my patients. I love cerave! Use it everyday! And sun protective clothing is great too! I am the owner of a long sleeved bathing suit.😳. But I think your dermatologist can help you. Make sure you see one that at least does some cosmetics. I do medical dermatology, but I have a doctor that is one of my surgeons and head of cosmetics. I send her pictures of cases all the time and she will help me and the patient with anything cosmetic that is other than me writing a prescription.❤️

[NorfolkBagpuss]

hello I have been taking Hydroxycarbamide now for nearly a year. My bloods have finally come down from 1500 to 321 this week. I have had no other side effects except on my face. My skin is very blotchy and dry with spots and blisters. Sometimes these bleed at night. I have to cover with make up to go out. The doctor gave me a steroid cream to use but only for two weeks because it thins your skin. It is a little better but not much. I keep it dry and clean. I'm hoping to drop some meds soon and hope my skin will recover. Good luck to you