Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

We really appreciate you supporting each other whenever possible, and thank you for sharing your experiences to date.

We would be grateful if you could spare a few minutes to complete this short survey and help us to improve the Forum this year. The survey is only 5 minutes and can be completed here: https://www.smartsurvey.co.uk/s/ANForum/

Do you avoid the sunshine?

I've been pottering about the garden today taking advantage of the beautiful weather that has finally arrived. I have to be cautious in the sunshine though as I've had warnings from the doctors to either avoid the sun or wear high factor suncream. This is mainly because my skin GvHD gets aggavated by the sun, but also I seem to remeber I need to avoid the sun whilst I'm on Ciclosporin.

One thing I have noticed though is that I soon run out of energy if I am in the sun, even if I'm wearing sun cream. It's as though the sun saps my energy.

Does anyone else feel similar now that the days are hotting up?

Comments

  • My husband is off cyclosporine for years now but still covers himself in factor 50 when in the sun and avoids midday sun.

    He was told recently that as his immune system had 'taken a hit' he was to be careful as he was more susceptible to skin cancer.
    He always wears a hat and we don't holiday abroad in the summer.

    Sometimes ,I think he looks like he has a silver glow ,caused by applying too much cream, and the steering wheel of the car is covered in white cream,small price to pay,
  • I am not on cyclosporine any more, but because I had TBI I have been told to wear factor 30 as a minimum and factor 50 preferably. I am allowed to be in the sun as long as I take precautions not to burn. This is because I have a slightly higher risk of skin cancer due to the radiation. I am booked to go to Majorca this summer (2 years post transplant in July when we fly out), I won't freak if I am in the sun but when sitting I will choose to be under an umbrella as well as using factor 50, which I use EVERY day in the summer (and factor 30 EVERY day in winter). Just take precautions but enjoy the sun. I worry about my vitamin D levels but I have these checked.
  • This is one of the things that I thought would be hardest to deal with in my post transplant/recovery years. Prior to my BMT I was an absolute sun worshipper and could never get enough. I expected to feel quite resentful and put upon having to slip slap slop, but to my surprise have turned into a shade hugger - I get uncomfortable if I'm in the bright sun for too long, - so strangely the problem seems to have taken care of itself.
  • Good point Jayne, it's always worth getting Vit D levels checked - it can be a big factor in low energy
  • Hello everyone,

    Last post was in September so I thought I'd bump this discussion as it’s been sunny for most of the country this week. Summer is on it's way.

    What has helped you all to take care of your skin in the summer? Have you found anything in particular that helps with your GvHD?

    Some people have noticed an improvement when they come off cyclosporine – has that been the case for you?

    Do you also find you have to take extra special care of your eyes at this time?

    Billie
  • Hi Billie

    Lots of sun block on exposed skin for me mostly face and neck, I have found that factor 30 minimum works for me

    I usually keep my arms covered wearing cotton only shirts with long sleeves. The cotton also helps to stay cool.

    I always keep head covered usually with a sun hat or baseball type hat which helps to keep sun of the eyes. I have promised myself a Panama straw hat for the Summer which will be a first for me! I am finding that my eyes still get watery in bright sunlight so I'm thinking of changing my glasses to a reflector type.

    I am still pleased that so far I've not been troubled with hay fever, it's probably a bit early yet but like others have reported, for the last 2 years post transplant I found I was cured of it.

    Whenever I have mentioned eyes issues at clinic, a course of drops has always cleared them up after a couple of weeks.

    Peter
  • Hi,

    I'm just back from a 'Men's Skin Care/Well Being Event' hosted by Macmillan at their Centre at the University Hospital South Manchester. The event was a first for men and was presented by Boots staff including a Pharmacist. There were half a dozen men present and the main issues were dry skin, none of us wanted to try or discuss anti ageing products. It was an interesting session. The staff are in a partnership with Macmillan so they were sympathetic to the various issues we have.

    I really want to say having spoken to the Pharmicist, he strongly recommended a factor 50 sun block for me.Time to get rid of the factor 30.

    Peter
  • I use factor 50 sun cream if I know I'm going to be out in the sun for any length of time, and I usually wear sun glasses when it's bright anyway as my eyes have always been sensitive to bright light. I had skin GvHD and my skin is now no drier than normal, and the GvHD didn't affect my eyes thankfully.

    My GvHD appears to be under control now and I'm almost off Ciclosporin at last, but I was disappointed to hear from my consultant that I'll always have to be cautious in the sun to avoid the risk of the GvHD returning. I was hoping someday to go to sunny climes on holiday and would love to revisit the Carribean, but I guess wherever I go I'll have to keep smothered in sun cream and sit in the shade, which seems a waste of a holiday.

    I'm pleased to say though like Peter my hayfever doesn't seem to be troubling me any more. Usually at this time of year with the blossom in full bloom my eyes would be streaming from the tree pollen. I haven't had any bother all with it so I hope that's something that continues. Perhaps it's a hidden benefit of a transplant?

    Steve
Sign In or Register to comment.