My skin reaction to sunlight/glare has returned. I'm on methotrexate and infliximab - any suggestions?

Yesterday I went out for a picnic. Fifteen minutes in the car, five between carpark and shady place and back again. I had factor 50 on and a shady brimmed hat. And sat in the shade most of the time. I woke this morning with a hot, red slightly inflamed face. Those of you who were around last year will remember I had this same reaction with little exposure to the sun before. I'm in Scotland, so not fierce sunshine. And I had it sometime before I started on the meds so it might not be them.

I'm due to have a postponed infusion of infliximab on Thursday and am desperate because I'm on a special holiday in a couple of weeks time. Those of you who can, enjoy the sunshine! I'm just looking at it through double glazing!

XX

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  • Cathie, i have to be careful in the sun these days.I use e45 cream every morning and night as my skin is very fragile due to the steroids. Like you i have to wear a hat/visor. Factor 50 in the sun too.

    Have a lovely hoiday and get some rest.

    Love sylvi.xx

  • we"ll be lucky to get much sun up in north coast of scotland but the cottage does have a double shower and two baths including one outside!! so we should be clean, or something

  • Hi Cathie - I've been thinking about you with this sunny weather and wondering how you are getting on in it. I don't seem to have this problem with the MTX so maybe it's the anti-tnf? I've been out all day with no sunscreen and I'm very fair but all i've come up with is freckles! TTx

  • The GP said he thought it was the inifliximab, which is worrying because I'll have to risk changing what has brought so much relief. I'd love freckles, what I've got is a big red face which I'm trying to calm down before Thursday. If I can get my anti-tnf thing so I can do things on holiday, then I can think about long term solutions like changing the meds.

    I'm glad you've had sunshine 'up there' and can't wait to be in the wilds of Durness in April! This juggling of meds is tricky isn't it and we have to make sure we really are properly informed.

  • Im in Forres Moray and the temp today was 24 so be prepared, I to get a reaction to the skin on my face, I'm on leflunimide, and have been for 3 years, But only developed the facial skin rash last year, I just think its just an enevitable reaction to the rhuematoid, unfortunately I've always been a sun seaker, but I have to keep in the shade with small bursts of sunshine, a good suncream day and night a hat and glasses, but I still, enjoy it there are always positive's remember there will be no skin damage or premiture ageing.:)

    enjoy your holiday Durness is beautiful, x

  • Thankyou. Its good to seek the positives. 24 degrees innmarch!

  • Hi Cathie,

    I've been on Cimzia (Anti-TNF) for just 3 weeks now, when I had my counselling with the pharmacist nurse she advised that I would not be able to go out in the sun anymore, and if I absolutely had to I should wear SPF 50 and cover up. Not sure if this is maybe the case for all anti-TNF?

    Thing is we still need vitamin D, oh it's so difficult. Mention it to your doctor, as it may be anti-TNF.

    Look after yourself and leave the sun in the North West for me, I'm off up there in May!

    X

  • Hi Cathie - I think I know what you mean! I was in the garden for a few minutes on Saturday, and came out with a terrible burning red rash on my lower arms. It's the same as I had in the late summer / autumn last year. At that time I was on leflunomide, hydroxychloroquine and an NSAID (etodolac). I have since had all these meds changed (except hydroxy), and now on prednisolone (low dose), a different NSAID (meloxicam) and MTX, and still seem to be really sensitive to the sun. I do have a crossover with lupus though, which can make you sun sensitive, so last year they weren't sure if it were meds or SLE, but seems just as bad this time around (I've had that bright red face too!). Being from the southern hemisphere and growing up in average temps of 30 degrees it isn't something I'd suffered from before, and last year in June was in Spain, in bright sunshine, also with no problems, so not sure why it suddenly appeared! But it is a bit depressing when at the first hint of a good spring we have to run and hide!

  • Hi Heather,

    You'll have a better knowledge of the lupus than me however I do know when I was on prednisolone my skin was really sensitive and my face very 'rosey'! Doc told me to wear a high factor whilst was on it. Just a thought x

  • Thanks Jen, Hadn't heard of prednisolone being another one making us sensitive to the sun! However doesn't surprise me as so many of these meds seem to have it as a side effect. It's just strange how it comes and goes, but I think I've resigned myself to the fact that I'll be smothering myself in factor 50 from now on!

  • Well factor 50 did nothing for me yesterday! I think i need a burka

    Xx

  • Actually my brief episode with Sulphasalazine ended with a sun sensitivity rash from heat wave last June in Edinburgh and I came home with this incredibly red, itchy blotchy patch on my chest where I'd sat in the sun and got burnt and then it seemed to spread all over me in dark red blotches and I had to stay out of the sun for a month or two until it was out of my system. Some of these drugs do have sun sensitivity or photo light sensitivity as common side effects so it seems you need to find out which it is for you Cathie, the MTX or the inifliximab. As others have said you need your Vit D and it's miserable having to stay indoors in gorgeous weather so maybe time for a change in meds? TTx

  • The interesting thing is that the blotch part comrs up in the night, like an exposure in the dark room. I just wish id had my last dose of anti tnf im now 3 weeks overdue and aches and tiredness are coming back. Id like my holiday then a review of meds!! Cake and eat it.

    Ill share anything i learn with you all as it seems im not alone. Big hats and shade for some of us

    Xx

  • I got terrible sun sensitivity from the moment I started MTX...and it has only got worse as Hydroxy & Sulpha have been added into the mix. From now until Octber I'm going to be creeping around like a vampire, lurking in shady corners and covered with big hats, loose clothing and loads of factor 50. What I did try last year was an acclimitisation - so 1 minute hatless on sunny day one, 2 on day 2, etc etc. And that did help a little bit as I managed to get to point where I could be outside with factor 30 for a short while without breaking out in a rash. Polly

  • We should try to derive some pleasure from this - for instance, sources of big hats!

  • Don't know if I am being any help, but was on Methotrexate some years ago (back on again now) and on holiday always used to get a prickly heat type of thing also got it with sulphasalazine. A friend said try Clarytyn (or similar) take a week before you go on hols and during and it worked and that was in Crete! As with us all you will have to check to see if this sort of medicine is ok to take with your existing medication x

  • Thanks, this is all very useful. I'm googling wide brimmed hats and a friend is lending me one she used in New Zealand last year. Truly a global search.

    But I've just spent half an hour in the garden (shady at this time of the earlyish morning). C

  • I get really rosy cheeks in the summer that lasts through Fall. I wear 50 before I go out too. That is all that changes though. I leave my arms & legs bare & I'll only get more freckles.

  • I'm on anti-depressants, prednisone, plaquinil, Arava, and Mtx + other stuff for other things.

  • Mine is more than rosy cheeks, its more of a reaction. Red inflamed face and later I get watery swellings under my eyes. Sun's still shining here!

  • Maybe rather than the red hat club for admirers of the "when I grow old I'll wear purple" poem, we need to have a big hat & factor 50 club. Full of slightly wobbly, rosy cheeked people, moving slowly and dropping things rather frequently. Px

  • What a thought!!

  • Morning Cathy, sorry I'm no help but just wondering how you are, did you manage to stay infection free and okay for your infusion? x

  • That's kind of you to ask. I woke with big blister type swellings under my eyes just the same pattern as last year. I'm waiting to see but I don't think I'm going to get my infusion ! They're jumpy about reactions. I'm resting in a darkened room and will phone them later.

    A friend lent me a solar hat she got while on holiday in nz and ive ordered two as I feel like I've got two heads! And I've got a sniffle..

    It does help to get a sympathetic message though

    Xx

  • oh no :( poor you, i'll be crossing everything for you :)

    solar hat! sound em odd!! i'll be googling that one! xx

  • Hats are called sunday afternoon and are practical on that they stay on in scittish high wunds. The latest is that the hospital regustrar thinks ill be ok for anti tnf but they want to see me tomorrow as planned. And ive been surfing and womder if i have lupus.

    The suns gone round to back of the house so i can go and plant a lavender in a pot now. We're missing a karine polwart concert at greyfriars tonight but i think my face woukd frighten the horses!

    Xx

  • Cathie, you should get them to do the blood test that is quite specific for lupus. Mine was found quite by chance even though more of my symptoms are RA. When symptoms first came up they tested RF, ANA and antiDsDNA. Tested negative on RF, and positive on ANA and antidsDNA, which is apparently very specific for lupus. Rheumatologist then tested for antiCCP as he said my symptoms were more RA, and tested positive on that too, so he diagnosed a crossover between the two! Luckily most of the treatments are the same (MTX, hydroxy, pred) although apparently not all biologics are suited to both. Makes things tricky because so many side effects of our meds are also symptoms of lupus, and then there is also drug induced lupus caused by some of our meds! So never know what is the meds and what is possible illness!

  • Thanks for this. I agree I don't tend to look too much at different websites but this one does have me intrigued. I'm planning to get my usual treatment and then try to see consultant to talk about skin reaction and possible lupus. It's no fun having to stay in on a sunny day. More of which I think, tomorrow!

    Xx

  • thats good news (hopefully) about your infusion, I'd hate to miss out on my enbrel doses!

    and Lupus, yikes, there is a link between RA and Lupus is there?

    I've managed to kill many a lavander but still try as it so lovely :)

    I'll be thinking of you tomorrow x

  • Thanks xx

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