Hey there, I am new to this group and this is my first post 😊
I was diagnosed with RA in December and started on Methotrexate then also prescribed Hydroxychloroquine in Feb, they are both working wonders... however i have noticed that only 20-30 mins in the sun and i am burnt 🥵 i am a sun worshiper and never usually burn, i currently look like a lobster after being in the garden for 20 mins today, is this a common issue?
Also for about 2 months i have been very itchy, my arms get so itchy i am waking up in the night ripping my skin off, i’m bleeding (a little) and bruised from itching, my arm looks awful ☹️. Does anyone have the same issue?
Thanks Guys x
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MrsBerry
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I’m on MTX and the sun is a big no. Although I’m fair I love to sit out in the sun not any more even with a high factor suncream I get angry red pin spots that are very itchy and will last for months. Unfortunately our medication makes us so photosensitive 🥺
Yes! I am normally someone who tans easily, even when I'm not trying. Rarely burn. But since taking hydroxychloroquine, I burn in 2 minutes flat. Dangerous to expose yourself to the sun while taking it.
Ohhhh i didn’t know, i will take precautions.. will have to find a good fake tan... thank you for the reply... i’m new to all of this and so much to learn x
Can't help with the sun issue I'm afraid. But I was on methotrexate very briefly (8 weeks) till I had some bad liver function tests, so was told to come off them. Then I started to itch like mental and had another blood test which showed my liver function tests were through the roof high. The hospital thought it was my liver so had even more blood tests and then diagnosed it as a viral blood infection Hep E. Doc said not uncommon for methotrexate patients to pick up this sort of infection due to lowered immune system (under cooked meats/unwashed fruit veg). Thankfully its all calmed down now and I'm waiting for another treatment plan. Just a thought.
Gosh, that sounds Awful, glad it’s all calmed down!! so are you not on any meds at the moment? ... my next blood test is in August and so is my phone appointment so will tell them about the itching... thanks for your reply, it’s good to hear other people’s experiences 😊
No not on anything at the moment but thankfully the pain is tolerable and no swelling which makes things far, far worse. Going to see Consultant wednesday so hopefully should be back on track then.
I became very sun sensitive from the drugs (not quite sure which as was on MTX, hydroxy and sulpha), and have learnt to cover up and use factor 50 sun screen. Now if I slowly acclimatise early in the year it is better. I am also light sensitive, so use very dark wrap round sunglasses.
Hydroxy does make some people itch, as it builds up. Tell your medical team now rather than wait for appointment.
I’m fairly sure that when taking hydroxyl, the advice is to stay in the shade. Can’t quite recall as it was a long time ago I took it. Check with your nurse 🙂
Hi, I can’t help with the itching but I do know you have to be very careful in the sun when taking these meds. I’m fair skinned and therefore higher risk and as I live near the sea I’ve always spent time on the beach, swimming etc and last year I was diagnosed with a serious melanoma which they told me was probably caused partly by the MXT which I have taken for 6 six years. You have to use a high factor and stay out of the sun during the middle part of the day really. Such a shame but you need to take care.
Thank You for your reply... Sorry to hear you were diagnosed with Melanoma 😞... I really can’t believe the meds can do this 😩 I will take precautions now i know and find a good fake tan xx
I was on Hydroxychloroquine years ago. And had the same reaction. I wasn't on Methotrexate at the time, but I was sent to a skin specialist. And he felt it was the Hydro, that was the cause. Unfortunately, even tho' I am no longer on it. it is permanent now. Although I was never that good in the sun in the first place. The Hydro, increased my sensitivity.
Hi Mrs. B...very pleased the meds are helping with your RA but obviously you need advice re the sun sensitivity and itching...why not speak to your rheum team today as they need to know if any of the drugs are affecting you. I was originally started on hydroxychloroquine, had the same problem with sun sensitivity, then an extremely severe itching reaction. I was told to immediately stop the medication. Fortunately the itching subsided over a few days and my poor traumatised skin returned to normal. No problems with Methotrexate, which I then started after waiting for a month. Best of luck but do seek help rather than risking a very severe problem. S.
Heyyy, Thank You for your reply. Sounds like we have very similar issues! I am going to call the team tomorrow for advice... Are you still on MTX now, do you have any issues in the sun? x
I am still on MTX but it’s not controlling the disease, hence starting Sulphasalazine. I am more sun sensitive since starting MTX, so always use sunscreen and avoid the sun in the middle of the day...I can’t tolerate any hotter than 23-24C nowadays anyway! I do hope you get sound advice and help tomorrow. Let me know how you get on. S.
Like you i am on hydroxy and i can't stand it as much as i used to, so what i do is sit out in the morning and enjoy the sun then come lunchtime i sit under the parasol and i find that helps me. xxx
I developed sun sensitivity on mtx and noticed a considerable improvement after being prescribed Vit D. Also by trial and error found type of sunscreen I used important in allowing some sun exposure.
Sorry can't help with itching other than aloe vera helped in early days with prickly heat rash after sun exposure.
I have been on methotrexate for 18 years. I am very itchy but only on my back. I also have very dry skin but I know I don't drink enough water. Not sure what causes either. I don't have a problem with Sun.
I hope I can. I had to come off it once for two months and was virtually bedridden with a massive flare and excruciating pain. I had to have three days of emergency treatment and my Rheumatologist at the time was very shocked to see me in the state I was in. I never want to go there again. I suppose the only time I would come off it is if it started to affect my organs. Hopefully that won't happen. There are many people who have been on it for many more years than I have. I hope your side effects settle and you can tolerate methotrexate and end up in remission as I have. x
This is a side effect to MTX, it happened with me and that was in early March sun wasn’t that warm. Since then I have had to use total sunblock, ps also a sun worshiper
I have been on mxt injections for some years now and also now hydroxy so have been told by rheumy to be very careful in the sun high factor sunscreen and a big hat! I suggest you talk to your rheumy or member of his/her team for advice which should have given to you in the first instance. So far no itching so sorry can't comment on that must be awful.
When I was on methatrexate I didn't realise you should avoid sun/sunbeds. I developed hyperpigmentation on my neck as forarms. I look patchy 😁 but my neck looks like I have leopard print! I've embraced this now. But be warned sun and methatrexate didn't mix well for me! 😊 stay well ☺
Oh gosh, I can’t believe it 😞 I love the sun and sun beds (good job sunbed shops have been closed!) I will be careful now! how long have you been on MTX? when did you develop hyperpigmentation? Thank you for your reply 😊 x
I never tan but I know its a no no for nearly all RA meds. So it doesn't really affect me and I sit in the shade when on holiday armed with a tube of M&S self tan. Looks really natural the bonus is my chum always outside has a lot of skin problems but mine is good few wrinkles and must be down to a lack of sun. Anyone see the selfie of Ulrika Johnson she looked 90 and is a sun worshipper.
yes it is a known problem so its a high sunscreen loose t shirts and a wide brimmed hat and sit under a brolly now sorry to say and you may still get some reaction but a bit better than you are experiencing. Im on mtx too and a biologic and i go red and it itches if i am not careful. Take care.
I too have been able to sit in a hot sun all my life but since taking methotrexate and hydroxichloroquine , I have to cover myself in sun cream every time I go out . Sun bathing is very much a NO, NO!!
I have covered my body with moisturiser ( body butter) every day because of my itchy skin . I was prescribed a moisturiser for this purpose by my dr.
I also put baby oil in my bath every time - every little helps 😉
I have been taking MTX since 2003, initially in pill form but by injection since 2006. The leaflet which comes with the drug does have "increased sensitivity to light" as an 'uncommon' side effect and I do find that my skin is now more sensitive to sunlight. I have developed a few solar keratoses on my forehead and arms when exposed and, as a result, use a high factor suncream
You cannot treat these symptoms lightly. You should have been told not to sunbathe at all, MTX can cause other serious conditions. You should report your Itching too this could be an allergic reaction to both Medications. take and read the booklets they gave you.
Heyyyy, I am going to call team tomorrow and let them know the issues i’m having! I did read the info but didn’t see anything about avoiding sun ☹️... i have a lot to learn ! Thank you for your reply x
Hi, yes I'm on MTX and had to stop going on my sunbed and have to be very careful in the sun (I sit under a sun umbrella now). I also have itchy upper arms and use Childs Farm moisturising cream to help this.
Welcome MrsBerry. I was never told about the sun either and I’m on mtx and hydroxy, I only know about it from people on here mentioning it. Before that I never avoided the sun and don’t burn easily. Another case of ‘we are all different’ 😊
Well I called the team and a nurse called me back just who said she has never heard if skin itching as a side effect of MTX or Hydroxy 😩 she then asked her colleague who also said no never heard of it and its not on the leaflets 🙄 😩😩 so i should visit my gp x
When I rang my advice line the nurse said it didn’t cause itching. I ended up in A&E as I now know I’m allergic. Saw consultant who confirmed it was a side effect. I just remembered as I typed this is the he same nurse I’m having problems with now🤔
typical. The problem is if they have not had a patient complain they don't know the problem exsists. I don't think they even read the leaflets or checkout the side effects. My RA nurses were very good explaining most side effects and how to avoid them if possible. I have recently moved and this area RA team do not seem to have much knowledge about anything to do with RA.
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