Hi I'm looking for a bit of advice. I'm going to Croatia on Thursday for a pre-surgery holiday and have just been reading about the link between Methotrexate and photosensitivity. Everything I've read seems to suggest covering up completely from head to foot which seems a bit extreme. I always use factor 50 and would like to think I'm reasonably sensible.
Does anyone else have experience/advice about this? I'm not planning to lie in the sun for hours, but will definitely want to swim.
I'm on 20mg Methotrexate a week.
Any advice would be very welcome as always. Thank you.
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Dance62
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I do not know about Methotrexate and exposure to the sun in particular but my daughters and grandchildren live in Australia and they protect themselves from the harmful rays as a matter of routine and habit. They use factor 50 sunscreen and wear hats. They go in the sea a lot and wear pretty swimwear with sleeves and the boys wear rash vests. A surfing session and they wear full cover up wet suits. The boys’ daddy runs a clinic for skin cancer. He removes dodgy moles all the time.
It’s a good habit, although we were never raised that way. I was warned about Pred and sun exposure once. I would err on the side of caution. I have heard that Croatia is truly beautiful. Look after yourself.
You can get pretty rash vests with matching shorts on line from well known out door makes ie Billabong, O’Neill etc. Have a browse. I would think you should easily get them where you are going to as well. Good luck! Have a good safe holiday.
I don't think that everyone develops it but Factor 50 and looking for shade is a good idea.
Personally I find the extra heat of being in direct sun too uncomfortable with PMR - that was without MTX - bear in mind that that can add 10-15 degrees to the temperature you feel so that mid 20s C can feel more like 40C, Croatia tends to get weather similar to Italy as it progresses west to east and it hasn't been fabulous here yet - the wettest first 4 months of the year since 1951!! It is a bit early to get a reliable forecast yet - the Med and mountains make forecasting difficult. At present it is low 20s in the north, mid-20s further south, with showers and possibly thunderstorms so probably quite humid as well which makes it feel hotter too.
Many people find their temperature control flies out the window when PMR comes in! Pred makes it worse for me.
It was a nightmare when my husband was alive, he was a cold soul anyway but when he was ill he wanted the heating on full blast. He had the small room, had the radiator on as long as the central heating was on and then a small electric radiator when it wasn't on or enough. I had to almost strip to go in his room, it was like the tropics! He, on the other hand, wouldn't come in my room as it was "too cold". At 22C ...
That’s like us! My husband used to be the hot one. Since his cancer treatment he’s lost weight and is always cold. I was always cold but now I’m opening windows and sweating all year round. Summer can be purgatory! Is it PMR or pred or both?
Identical situation - OH had cancer at 41, pre me having PMR. In the hottest summer Scotland had had ... I very quickly got a new bed, an IKEA one with two single 80cm mattresses and single duvets so I could have a summerweight one and he had an extrawarm winter one!! I'd realised I only slept well in Germany where beds are fairly standard like that, no double duvets and mattresses.
Well his demands would have tried me anyway - rooms at 25C plus were hell for me! I think it can be either or both - I suffered even more during the 5 years I had PMR without pred and then pred added to it in some ways though calmed it down in others. Now I am down to 7mg pred I actually feel colder - this May has been appallingly cool and very wet, I still have the heating on in the mornings up here in the mountains. It is usually off long before the end of April.
I've enjoyed our cool spring, but it's warming up now. Interesting about the cancer: my PMR arrived due to the stress of his diagnosis. He's thankfully fine now 5 years down the road. I was hoping I would be too, but just upped yesterday to 7.5mg for a flare.
It was probably 10 years later the PMR first turned up - after a load of stressful events, his illness, job changes, house moves while children were still trying to complete school exams, difficult house sales, I was in Scotland, he was in England, didn't sell the house but rented it out (to our benefit in the end). I didn't really think it was that bad at the time but in retrospect the 20 years before PMR had been what could fairly be described as INTERESTING!!!
V interested to read this as I developed GcA in 2020 then got PMR and when I look back I realise how stressful life had been. After a house move last year I feel I am only recovering now. Just want to relax and be permanently on holiday. Yes my body temp regulator has gone haywire. Cannot stand the heat now and have noticed in last few days how being in the sun affects me. My face feels burning and goes red whereas in the past I could tolerate and my skin went brown.
I believe Croatia is roughly the same latitude as where I live, Nova Scotia, and we're advised as a general rule to stay out of direct sun between 10 am and 3 pm local time during this time of year.
I definitely struggled with it last summer. We went to Lanzarote and in the first day I went completely bright red - but was using my normal sunscreen. I ended up buying a rash vest and cap and wearing those in the pool and sitting in the shade the rest of the time
I had only just started using it at that point and don’t know whether you would develop more immunity to it once the body has developed tolerance to it
I’ve never had a problem with sun and methotrexate. I use factor 50 but took no other precautions. I didn’t sit in full sun all day but I did swim and walk without any negative effects at all. This was in Majorca in the mid/late 20s
not much help. As we didn’t go to Croatian til early September. I burn very easily, & use factor 50, but my weakness is that I forget to re-apply it regularly. Whoops. Croatia is beautiful, enjoy. So pretty, lovely & friendly, too. We used to snorkel a lot, & I loved swimming, we had t-shirts with factor 40 protection built in, & I wore long shorts, & a bandana on my head…a lot of people forget head protection in the sea/pool! Hats fall off, you can tie a bandana onto your head! Have fun, S x
Just check out Amazon, they have some rash vests and long sleeved swimwear. Next day delivery too so you will get them prior to your hols. Croatia is on my list of places I want to visit, have a great time x
I have been taking 20 mg. Methotrexate and gave up going to the beac,, where I am used to walk a lot. However, I went on a trip to Croatia, Austria and Hungary and we hiked in Plitvice Lake Park and walked in pretty cities. I put 50 suntan lotion and wore an Under Armour long sleeve shirt that rejects heat. But even that is not necessary. My rheumatologist said that I only need to be mostly in the shade with suntan lotion. Essentially, the med makes one more susceptible to burn from the sun. I interpret this as using common sense while still enjoying life. Have a wonderful trip! It's a great place to explore.
Using factor 50, wearing a wide-brimmed hat and covering up as much as possible are good ideas. Try to avoid the mid-day sun, when the UV is strongest. Swim in the morning, late afternoon, or evening, when the water temperature allows, only taking short dips. Shade is better than direct sunlight, but UV is scattered from the whole sky, so don't be fooled into thinking it is anywhere near safe: the only place with little UV is under cover.
The body's immune system is constantly repairing sun damage. The greatest problems come when it is overwhelmed by the strength and/or duration of exposure; that is when the damage builds up, so spread things out. All things in moderation.
I am on 15mg MTX weekly and was away on a winter vacation in sunny, hot Puerto Vallarta, Mexico last Feb. I wore 50 spf sunscreen and was in the shade and sun throughout my vacation with no problems. We swam, walked, etc. and no issues except the day prior to us leaving when I developed a PMLE related rash.
I had developed PMLE (polymorphous light eruption), basically an allergic reaction to the sun, 5 years prior to developing PMR. So my first exposure to the sun each year usually results in a bumpy, itchy rash. This usually only lasts a few days, then I’m fine the rest of the season.
A sun lover my whole life, I am now more diligent about using sunscreen and being in the shade, however having a pool usually means sun exposure in the summer. So I do try and slowly work up my time in sun by sitting out 15-20 minutes in the morning as to adjust each summer.
Of note I’ve never had the bright red sunburn related to taking MTX and sun exposure, in the 2.5 years I’ve been on MTX (and the first year I was on 25mg weekly).
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