Leflunimide and sun exposure

[smilelines]

I was told the leflunimide increases sun sensitivity and I will be sent for skin cancer checks once a year now. What should I be doing about this? Is sunscreen going to be enough or should I avoid the sun or cover up. Does anyone know how much more dangerous it is to be in the sun on these medications? Can I still wear shorts? I am finding that I am hibernating away from the sun right now.

[Deeb1764]

If you look at NRAS site or versus they will explain what to do but basically the same as what you should be doing when going out in the sun. Hats sunscreen etc etc and reapply creams too.

[helixhelix]

Use high factor 50 sunscreen, hats and no sun bathing!

Each person is different but I found (not with lef, but sulpha) that I would blister if out in sun for very long. But if I build up very carefully from beginning of the year, then I can wear shorts and t shirts and sit outside (not in full sun) without problem.

But equally you might not have any problem at all...but still use sunscreen and don’t sun bathe.

[pamakh4]

Hi I've been on it for 3 year and has never been told anything about cancer checks and I like the sun. 🤔

[LoneEra in reply to pamakh4]

I’m just thinking the same! I was literally handed the prescription with zero advice or warnings.

I know from experience a lot of these drugs cause photosensitivity and I am very careful in the sun anyway...but it would have been nice to have been told.

[Boxerlady in reply to LoneEra]

I'm on Methotrexate, Hydroxychloroquine and Sulfasalazine and don't remember any specific advice about this either 🤔Luckily I've never been a sun-worshiper and rarely sit in full sun (used to be prone to prickly heat rash and generally feel grotty if I get too hot) but for that reason, I've never used sun screen although I occasionally wear a floppy hat in the garden. Do I need to start wearing sun screen now?

[helixhelix in reply to Boxerlady]

Sulphasalazine was the drug that made me most sun sensitive - went outside in early spring without thinking about it and ended up with blistered arms.

But it’s individual. Some people don’t react at all. Others get a mild heat rash.

However sun sensitivity and risk of skin cancers aren’t quite the same. This is the text from the arthritis foundation:

Skin Cancer: Both methotrexate and biologic drugs seem to slightly increase the risk for two forms of skin cancer, known as basal cell carcinoma (BCC) and squamous cell carcinoma (SCC). According to a 2016 study in the BMJ, taking a biologic raises the risk for SCC by 30%, though that’s still a relatively small concern: Treating 1,600 patients with biologics for a year would lead to just one additional case of SCC than would otherwise be expected. Both BCC and SCC are highly treatable; but if you take a biologic, wear sun block and report any moles or other skin irregularities to your doctor.

My dermatologist feels that everyone ought to wear sun block, and avoid excess sun exposure, no matter what drugs they are on. He says the majority of people he see who have skin cancers are linked to sun exposure.

[smilelines in reply to helixhelix]

Thanks for the post and research.

[smilelines in reply to LoneEra]

I only heard about this because I went to the dermatologist about something else and when she saw I was on leflunimide she told me I would need a yearly check. My rheumatologist tells me nothing and I agree it would be nice if they told us information instead of us finding out on a blog or by accident.

[Lizzery]

I’ve been on Leflunomide for about 8 or 9 years, and sun sensitivity has never been mentioned. I do however cover up, and use a high factor sunscreen anyway. Umm just one of the many side effects I suppose.

[Matilda_1922]

I believe methotrexate is the same too

Advised to use high factor suncream i use 50 and reapply frequently

[gillpalmer]

I was told to keep out of sun as much as possible & to wear 50 factor sun cream but never told about cancer. Have been on lefluomide for a 10 years.

[smilelines in reply to gillpalmer]

I am new to leflunimide and it is nice to know you have been on leflunimide for ten years and you are doing ok.

[Shanim]

I have been on Leflunomide for about 3 years, never been made aware of any of this, it may be a side effect but they should surely make us aware of it, I sit in the sun whenever I can, it makes me feel a whole lot better so I am definitely going to have to check this out.

[smilelines in reply to Shanim]

I love to go swimming and to warm up in the sun. The hot cold treatment feels so good.

[Mmrr]

I was told to use a high factor sun screen and sit in the shade, when I was previously on MTX and now the same for leflunomide. (I'm not a sun worshipper so no different to what I've done all my life.)

[Boxerlady in reply to Mmrr]

So the sun screen is necessary even if you stay in the shade?

[Mmrr in reply to Boxerlady]

Yes as the sunrays are reflected onto you from your surroundings.

[Boxerlady in reply to Mmrr]

Gosh - thank you. I'd better get some sunscreen!

[Mmrr in reply to Boxerlady]

👍

[K3-2]

😱😱 I’ve been on LEF for 3 years and not been told about skin cancer checks ! I have annual eye check because of HXQ. The other problem I have on LEF is neutropenia which has been going on for a couple of years.....Rheumatologist aware of it but I just have regular blood tests. 🤷🏻‍♀️

[Artroc56]

arthritis.org/drug-guide/me...

[smilelines in reply to Artroc56]

Thank you for the article. Sounds like I will have to be really careful and the sun sensitivity can be awful.... blisters etc

[Artroc56 in reply to smilelines]

I'm on it too. Never warned. Only got a caution about Methotrexate when i was on that.

[smilelines in reply to Artroc56]

I went to the dermatologist about something else and she is the one that warned me. So ridiculous. My rheumatologist didn't warn me nor my family doctor.

[medway-lady]

I was on it for years and travelled all over its like nearly all the RA drugs it makes you sun sensitive. So nice hat, high factor and reapply regularly. You know the drill and don't worry. I am fair skinned so it was nothing new really. I did take the self tan lotion on me hols so came back sun kissed although had been protected.

[Flor1rence]

same here with MTX high sun factor, don't sit out in mid day sun, limit sun exposure, hat etc🌝just be careful x

[Zer009]

Eczema sufferer from birth.Both Sulfazalizine and Leflunonmide caused sun sensitivity. Rheumy consultant never acknowledged the side effects even when I was forced to stop them.

Had a black spot removed from my chin.

With Leflunonmide my hair fell out too.

There seems no acknowledgement, accountability for the extreme emotional distress from this trial n error approach to 'treating' Rheumatology patients.

In more recent years information about drugs has become more available and this service is a great sounding board but I guess no one knows how we will react to any drug?!

[smilelines in reply to Zer009]

I was first diagnosed with fibromyalgia. My GP and other doctors said that the drugs for RA are horrible so I felt so lucky. Then my diagnosis changed to inflammatory arthritis and now everyone acts like the medications are no big deal. What the heck? Just take these. Off you go. Talk to you in 4 months. I ended up in the hospital from methotrexate. I noticed a bunch of hair in the tub yesterday. I agree! No emotional support.

[Helen-NRAS Moderator]

Maybe this will help nras.org.uk/resource/photos... Kind regards.

[smilelines in reply to Helen-NRAS]

Thank you🙂