Mycophenolate, sun protection and swimwear

[Nw6London]

Hi, I'm currently on mycophenolate (mg / x2 / twice daily) and in the active stages of systemic sclerosis. I have had some very mild skin tightening on the hands, but this has reversed. I used to be on hydroxychloroquine for about 6m then moved on to my mycophenolate. Recently, my skin has become really sensitive to the sun. Sitting in the car and experiencing a burning feeling every time I'm not covered - particularly on the arms. My legs are rarely uncovered. I'm going on a family holiday soon and do travel frequently. I'm concerned about sun exposure anyway with mycophenolate. What do women wear whilst enjoying the pool/sea? I was looking for a long sleeve spf swimsuit, but not finding much luck that's not a full neoprene wetsuit. Any ideas please? Ps I'm 38 and have a young family, so running after my LO is a given I think. Thanks

[Ascidian]

I have a long-sleeved UV-protecting "rash vest" which I use when swimming/snorkelling etc. Keeps me a bit warmer too. I also saw some UV-protective leggings in a surfwear shop. So perhaps try looking in the specialist surfing websites. Another option would perhaps be to look at swimsuits for Muslim ladies. I don't know if they have spf, but they do give good cover and are perhaps more feminine-looking than the surfwear

[Halfwayuphill]

I’ve bought something from these people. solbari.co.uk

They are quite expensive and you may feel they are too covered up. They specialise in clothes for surfers as you can really burn on a board! I’m much older than you though and apart from sun probs wanted to cover my bag of bones body caused by weight loss so I bought the knee leggings and a long sleeved zipper jacket thing. Lovely colours though! There are other makes around. A lot of the lupus people mention them so might be worth checking their forum. Enjoy your hols!

[LadyTrundle in reply to Halfwayuphill]

I bought some Solaris stuff too. They are an Australian brand where people are really tackling an epidemic of skin cancers. Lots of styles. Expensive but probably long lasting.

[Nw6London in reply to Halfwayuphill]

Ah, thank you. I'll check them out. I was on hydroxychloroquine for months and my weight vanished, so I too look like a bag of bones... 😅🤣 just taking it all in my stride, but body confidence is at an all time low. Need a nice pick me up of swimwear!

[Athena2023]

Hi

I haven't actually thought about swimwear. Just been on holiday to visit my daughter in Greece. Temperature hitting 40 degrees. Just the heat in itself was unbearable so stayed indoors and i am one person that loved the sun and could tolerate high temperatures. Just be careful and use the highest factor sun cream.

Good luck with choosing swim wear...do let me know please

[mad4cavs]

i tend to stay away from pools they are to cold but i have seen some modesty suits for muslim ladies available online,i wear factor 50,and a large hat plus sun glasses, have a great time

[LilyInTheSun]

Hi, I'm glad you've got a family holiday to look forward to!

I'm also on mycophenolate, although I'm probably through the worst of the active phase now. I go abroad somewhere hot most years, and always feel so much better being warm. I also love not getting the Raynaud's symptoms as much and it gives any finger ulcers a chance to heal up.

I've recently been to Greece for a pool/beach holiday, and just wore a normal bikini, but used a sarong or beach towel to cover up if needed (e.g. over my shoulders if I felt like they were getting too much sun). I always wear a good SPF50 sunscreen and SPF50 face cream (Nivea is pretty good), and wear a straw hat with a brim that gives protection to my ears and back of neck, and sun glasses with good protection.

I tend to sit in the shade or dappled shade as much as possible, especially during the peak heat in the middle of the day, although I'll still swim during this time. If we go to a beach, I'll try to find some shade under some rocks at the side of the beach (but you could also take an umbrella you could sit under), or I just limit the amount of time I sit in direct sun.

When my scleroderma was really active, I did the same things but did notice that 1) I tanned really strongly, even with little direct sun and SPF50, and 2) I used to get patches of hyperpigmentation on my forehead ('salt and pepper' appearance) - although this could be concealed with makeup and faded after a few months. I still tan more than other people, but not as much as before, and don't get the hyperpigmentation patches any more.

Holidaying with a little one probably makes it difficult to stay in the shade all the time, but you might be able to schedule your days so that you are in the shade more in the midday sun, and then out in the open in the earlier morning and later afternoon. And if you're visiting beaches, then perhaps research ones where you can hire an umbrella, or take one with you, so you can get a bit of shade while making sand castles, etc. And like others have suggested, surfing clothing might be a good shout if you want to be more covered up. You can also get sunscreens that you can apply once and last all day - I haven't tried these but might be worth investigating if you'll be in and out of water and don't want to have to keep reapplying regular sunscreen.

Anyway, I hope you have a fab time!