I've just started on hydroxycarbamide and read h... - MPN Voice
I've just started on hydroxycarbamide and read having to stay out of the sun unless plastered in sunblock. Is skin extra sensitive? Discuss!
I have fair skin so always been easy to burn but would say it has been even more sensitive since being on HU. Try to carry spray on lotion to give a quick burst when needed
Hi.
I've been on Hydroxi for 4 years.
Well, at the risk of making you really fed up, I have just had what I thought was a wart on the bridge of my nose diagnosed as a precancerous growth ( BCC) - the plastic surgeon didn't hesitate to say it had to come off with a skin graft replacement.
So, I'm afraid the answer is yes, be very careful in the sun.
It's rather the pits isn't it?
Sorry to be the bearer of bad news - you 're lucky though, my haematologist didn't warn me, and although I read the side effects of Hydroxy I didn't register the sun bit - or subconsciously chose to ignore.
Very silly of me.
Best wishes
Louise
I'm really sorry to hear that and hope all goes well. In my twenties I loved the sun and have olive skin so it's never been a concern. But in the last few yrs before being diagnosed with et I've always worn sun cream. Do I need to wear sunblock now?
HI ,
I have been taking hydroxycarbamide for 18 years and have had no serious problems in the sun , whilst I dont sunbathe I do wear shorts and short sleeved shirts and do not use sun block, However I do get some dry patches on my face and use face creams on them . In hot sun I do wear a hat.
However none of it stops me going to France with my caravan.
hope this helps.
town Crier
I've also been on HU for 18years + and at first didn't realise that I should take extra precautions in the sun. I found that as soon as I got out in the sun I became very itchy and thought it was the suncream (I'm very fair skinned so use sunscreen anyway). I tried several different ones and then realised that it was the sun causing the itch! I tend to keep covered up where possible but the sun isn't much of a problem in Scotland!! LOL! Now on Jakavi and have been warned about sun exposure
HU has made my skin very dry all over and done quite a bit of damage to the skin on my hands - deep redness and extreme dryness. Hope this will improve now I'm on jakavi.
Hi I have been on hu for over ten years and it has changed my skin. I now wear high protection sun cream usually the one for "kids" and a hat. My skin has also become very dry so use lots of moisturiser. We are all different on how we react to this drug but my advice would be to be sun sensible and enjoy the weather we are having right now.
My experience is that my skin is dryer since I am on Hydrox for now almost for two years. However, I love sun and I sun-bade ten to fifteen minutes at the time few times a day without sun block, then I sit in the shade. This works for me. We all have to remember that we need sun for our vitamin D and it is enough to be on the sun for only ten minutes to get your daly supply of vitamin D, but you can not use sunblock. Hope that this helps. Wishing you well.
I am confused about what sort of platelet level people go on hydroxycarbamide, or do we just except that we have to go on this noxious substance?
Hi treebeard,
The time at which hydroxy is prescribed depends on more than just platelet levels. I survived with venesections and clopidogrel for seven years, with platelet levels of around 800, however my age then came into the equation. I am 60 this year and the risk of stroke increases with age, with everyone, not just us mpn ers. I started hydroxy last October and have had no side effects. In a way I feel lucky that I am probably less likely to suffer a stroke than someone else who does not have an mpn. Back to the original question, just coming up to my first summer on hydroxy, I don't quite know how I will manage - I LOVE the sun!
Hi Soomoo,
Since I have been on Hydroxycarbamide I have found that my skin on my arms and neck has developed large brown blotchy areas were the sun has tanned me while working in the garden.These areas seem permanently browned, even when the rest of my tan fades in winter.
I always wear a sun hat when it is bright outside, I never sunbathe and wear high factor sun cream if I am staying out on a sunny day.
My skin has also aged rapidly in the four years on Hydroxycarbamide, thinner and less elastic.
I have also gained weight steadily.
Borage
Yep, mine is. I used to do a lot of surfing so I am used to being in the sun. Since being on hydroxycarbamide I have definitely noticed that I burn easier and so have taken to wearing sunblock in summer/ on sunny days and a moisturiser with some sun protection the rest of the time. Better safe than sorry
the first year i was on hu i did not realise the sun would affect me but iwas sitting out on one off our rare suuny days with a t shirt on had suncream on did not notice anything till next day from my elbows to the tips of my fingers were all swollen the backs of my hands looked like puppies paws since then i were a total sunblock or just stay out for a limited hu makes your skin photosinthesis extra sesnsitive to the sun
I have had E.T. for 9 years and yes my skin is much more sensitive. I've recently had a basal cell carcinoma removed from the bridge of my nose. It was mentioned at time of diagnose that Hydroxycarbamide could increase the risk of skin cancers but there is so much to take in at first. I always wear sunblock and try to keep out of the sun but not always possible or desirable.
Hi I have just been diagnosed with ET and Jak2 my consultant warned me of exposure to sun and said my skin would probably get more sensitive and that I might notice more brown marks on the back of my hands. She advised me to wear a hat cover my body as much as I can and to use high factor cream. I'm 65 and already have many brown marks on my hands so I'm not worried about that, I would also think that I damaged my skin years ago before we knew how harmful the sun is. I suppose we all know how bad the sun is for us regardless of MPNs so I plan to be more careful and sensible but I'm not going to let it ruin my holidays.
