Looking ahead to summer - questions

[123MrsG]

Hello all and a happy new year! Just a little update on me- I was diagnosed with lupus at the milder end of the spectrum last October. My rheumatologist has said that while I have lupus specific antibodies, they are not crazy high and so it’s hard to label my condition as SLE. It’s more like MCTD with lupus features. Anyway I commenced on hydroxy and I am beginning to feel some benefits.

I am now thinking about the summer months. I’ve always come out in a rash in sunlight although I’m fortunate that I can avoid the rash if I wear a good SPF and regularly reapply. I wondered if hydroxy can reduce photosensitivity rashes? I’ve read mixed information on this, with some saying that hydroxy can actually make sun rashes worse.

My other question is in relation to insect bites. If I get bitten by a mosquito while on holiday it basically ruins the whole trip. I react really badly and end up with a huge swollen area that is hot and sore, and takes weeks to subside (see pic). Will hydroxy reduce these reactions at all?

I’d be really interested in other people’s experiences. Thanks

[Lili18]

Hi 123mrsG,

I was very reluctant to start with lupus meds and my rheumatologist, whom i trust a lot, told me that hydroxy is photo-protective and will protect us from the sun. So yes, it will reduce photosensitivity rashes but you have to make sure you regularly apply spf50.

Hope that helps,

Xxx

Lili

[123MrsG in reply to Lili18]

Thanks so much for that Lili. I’m very fair so always slap on the suncream but sometimes I still get the rash. It would be great if I had a bit more protection now I’ve started the hydroxy.

[Paul_Howard Partner LUPUS UK]

Hi 123MrsG ,

The question about hydroxychloroquine and its effect on photosensitivity is a very tricky one. In many people with lupus hydroxychloroquine should help to reduce the sensitivity of skin to UV exposure. The Lupus Encyclopedia by Donald E Thomas Jr. states;

"Ultraviolet light exposure to the skin causes lupus to become more active. One interesting effect of anti-malarials is that they decrease this light sensitivity. Although taking them does not negate the need to use sunscreen and avoid the sun, they do help."

The confusing thing is that photosensitivity is also stated as a potential side effect of taking hydroxychloroquine, although the frequency of this is not reported. It is therefore difficult to predict what effect it may have on any given individual, so all you can do is take every precaution. We have an article on our website with loads of information and tips for coping with light sensitivity that may be of interest - lupusuk.org.uk/coping-with-...

We also have an article on our website about insect bites in lupus - lupusuk.org.uk/lupus-and-in.... I'm afraid I do not know if hydroxychloroquine will have any effect on the reactions. It is not something that I have heard as being beneficial.

[123MrsG in reply to Paul_Howard]

Thanks Paul, that makes a lot of sense and now I understand the complexities. I guess it’s just a wait and see kind of situation. I will check out those other resources. Thanks again for your reply.

[Barnclown]

Hello MrsG: interesting questions!

I can’t add to the great replies you’ve got already, but i will just say that i hyperreact to sun & heat equally + to insect bites. When i first started lupus meds years ago, it was with hydroxy on its own for a year or so. During that time i remained as photo & heat sensitive as ever, and developed severe cellulitis from insect bites - sort of similar to the biggest area of bruise-like redness in your photo, except my bite reaction looks very much like the classic bullseye with the big fat dark red bite in the middle and a vast slightly less dark circle of redness encircling it...i’m given high dose long course oral flucloxacillin for cellulitis

After a year or so on daily hydroxy, rheumatology added prednisolone & mycophenolate to my daily meds...on this daily combined therapy i haven’t had such severe reactions to insect bites, but i remain just as photo & heat sensitive as ever

🍀🍀🍀🍀 Coco

[123MrsG in reply to Barnclown]

Hi Barnclown, that sounds awful and I’m glad that you’ve had some relief with the additional meds. I wonder if I would also experience cellulitis with the insect bites if I wasn’t on fluclox, which I take all the time due to having CF. Incidentally, because I have CF, when I go abroad on holiday I take some emergency meds just in case I get sick. I had some pred with me one year and decided to take 10mg for 3 days for a mosquito bite reaction. It was a bit naughty because the steroids were meant to be for any issues with my chest, but I was really struggling with this bite. Needless to say the bite healed really quickly and I was able to enjoy the rest of my holiday. I am thinking of asking my rheumatologist if it would be ok to have some pred for my next holiday as I’m so fearful it will be ruined if I get bitten. I’m not sure whether an insect bite reaction would be a good enough reason to have such a problematic drug though.

Thanks so much for your reply.

[Barnclown in reply to 123MrsG]

THANKS for your reply: it’s ALSO interesting...because I decided not to complicate my reply by mentioning that not long after rheumatology adding myco + pred to my infant onset lupus daily combined treatment plan, immunology then added daily antibiotics (coamoxiclav 625mg 2x daily ongoing) to control my early onset Primary immunodeficiency Disease (hypogammaglobulinaemia - aka Antibody Deficiency Disease). But of course my daily antibiotics treament is bound to be helping fend off more cellulitis (it’s certainly fending off my other chronic multisystem infections)...so, why not: i’d definitely consider asking about you & pred...eg if you only try pred low dose for 1-2 wks on hols the degree of side effects/risks might be worth the trial considering the significance of your history etc? At least asking the ? gets the dialogue going...

[JodieBelll]

I'm in the same boat at you and found out you can get SPF 50+ cream on the NHS. I'm on hydroxy, mycophen (started with just steroids) and they have not helped with my face rash