Hydroxyurea and sun

[ChattyPanda]

WHY is it so important to wear sunscreen and sunglasses while taking hydroxyurea???

[Scottishterrier]

hi the reason why you have to wear sunglasses factor50 and a hat is the hydroxycarbamide makes you photosensitive the first time i went out with no protection my arms swelled so bad so that is why you have to be ultra careful in the sun

best wishes

ScottishTerrier

[Raphael_UK]

I was told to wear factor 50 sun cream & sunglasses - but as I never do what Im told I didn't bother - Never needed to wear sun cream in the UK before as I have Mediterranean skin - Big mistake I got corea damage & ended up in an Eye Hospital to have a piece of cornea removed & also came out in a lots of little wart looking blemishes called Seborrheic keratosis, it's noncancerous , but it doesn't look nice, had 2 of these on my face & for an old bloke I have very good skin, so I was a bit peeved, had to have they cryogenically removed . So I would suggest you follow the doctors advice.

[ChattyPanda in reply to Raphael_UK]

Crazy! Sorry for your troubles, but thanks for sharing, or I’d probably ignore it too!

[Rachelthepotter]

Hi

It helps to stop you getting skin cancers as well as the other forms of skin damage people have mentioned. Its a nuisance, tho.

Rachel

[francesb]

I was told Hydroxy makes us more prone to get skin cancer so we have to be very careful.

[Not2bad]

I noticed that I was much more sensitive to the sun when I was on hydroxy. On the few days we had sunshine I would burn easily. I tried to use sunscreen and a hat. I would definitely recommend following the advice!

[Bridie123]

I agree with everyone,, I wasn't told/ warned about this and developed a big discolored ring round my throat. It has taken two years for it to go down!

[Mazcd Partner MPNVoice]

It does say in the leaflet that 'skin cancer has also been reported in patients receiving long term hydroxycarbamide, you should protect your skin from the sun, regularly inspect your skin yourself and be screened by your doctor for secondary malignancies during routine follow-up visits'. And in our booklet on Hydroxycarbamide it does say: your skin may be more sensitive to sun whilst you are taking hydroxycarbamide. You may need to protect your skin by avoiding exposure to the sun, using sunscreen and wearing protective clothing and a hat.

Hope this helps, Maz

[ChattyPanda in reply to Mazcd]

I guess it’s one thing to read it quickly in a leaflet, but another to adjust my life to... Thank you for the details.

[jazzyb]

Always stay out if the sun and use factor 50. Prior to taking hydroxycarbamide I had malignant melanoma and also basal cell carcinoma. I've avoided the sun at all costs since but after six years of hydroxycarbamide I recently got another skin cancer, on my face this time, very upsetting. I have now been swapped to peg interferon because of this.

[ChattyPanda in reply to jazzyb]

Very disturbing. I hope you are ok now with your skin, and I hope you do well with your new med.

[RosemaryHarper]

I was on Hydroxy for a year and have just had 3 operations to remove basal call carcinomas from my face - never had one before in my life! Now I stay out of the sun and use high factor sun screen - better to be safe than sorry.

[ChattyPanda]

Thanks, Rosemary. Take good care of yourself! I will remember your experience, and try to avoid skin cancers.

[Borage]

I wear a sunhat, and clothes which cover, but still get some brown patches which don’t go away like a suntan fades. In this wet part of the UK there is still enough sunlight to damage the skin, and it reflects up from the puddles. I have the start of cataracts too.

[Chez1947]

I was diagnosed with polycythaema vera and JAK2 positive last week, I am not yet on hydroxy but will be, after reading about keeping out of the sun has done me. I love my sun I feel so depressed now,

[Louise2870 in reply to Chez1947]

Hi Chez, me too! Was diagnosed 5 weeks ago so still coming to terms with the massive lifestyle change - its pretty shit, but could be worse! I also love the sun and always feel better with a little bit of a tan. Going to Turkey with my husband and 4 kids in August so really concerned about how to avoid getting too much sun as even with high factors you're still exposed to a certain degree.

This forum has helped me a lot since my diagnosis - full of lovely, thoughtful, helpful fellow sufferers!! Louise

[Chez1947 in reply to Louise2870]

I phoned my nurse and she said as I will be started on a low dose of hydroxy I will be ok with 30 sunscreen, it has always been coconut oil for me, but alas not any more, this is all so new for me and I am still reeling with diagnosis PV JAK3 + I am 72.

[Chez1947 in reply to Chez1947]

Do you have PV JAK2 + too ?

[ChattyPanda in reply to Chez1947]

Yes, PV Jak2+. Higher than normal counts since 2014, but I didn’t get diagnosed until 2017 (then it was incorrectly diagnosed as ET bc I have high platelets too). We moved, and my new doctor knew on my first visit, and I had my first phlebotomy in July of 2018. I reluctantly started HU in Oct., but now my counts are staying lower longer so fewer phlebs. But the main thing is I’m feeling BETTER, so I’m SO GLAD about that! I still need much more sleep than I used to get, but if I get it, most days I feel very good the rest of the day. I’m very grateful for that.

[Chez1947 in reply to ChattyPanda]

So glad you are feeling better I hope I have a similar journey x

[ChattyPanda in reply to Chez1947]

Me too. But I am trying to come to grips with it. This summer will be a real learning curve. I have bought sunglasses, men’s long sleeve, lightweight fishing shirts (that are made to block sun rays), to wear outside as a jacket, and a lightweight ugly hat. It’s a different style for me... hope I can manage.

[Chez1947 in reply to ChattyPanda]

I phoned my nurse and she said as I will be started on a low dose of hydroxy I will be ok with 30 sunscreen, it has always been coconut oil for me, but alas not any more, this is all so new for me and I am still reeling with diagnosis PV JAK3 + I am 72.

[Helena303]

I think we should have prescriptions free as they are expensive. My skins probably damaged as when I was a child my parents didn’t put sun cream on me. I remember sun burn on my back. I usually use 50 suncream on face and 30 on body. I’ve bought some long cotton t shirts this year. Think I’ll go natural skin pale this year. I think just being out in warm weather will do us all good with some fresh air. I think sun is damaging as face has brown pigments. Think sun burns so not good because of Hydroxy so I’m not chancing it.

[Helena303 in reply to Helena303]

Oh I always wear sunglasses I think eyes and Hydroxy may cause problems.

[Helena303 in reply to Helena303]

They can prescribe sun cream don’t want another cancer as well.