Skin Lupus hydroxychloroquine

[Katouch02]

My daughter, 18, diagnosed 3 years with JSLE, only affects skin on face. She was put straight on 200mg. Hydroxychloroquine. The strongest side effect we have seen is lack of appetite which means sometimes she barely eats for days. Does anyone else have this side effect or skin only lupus? Thank you.

[Jmiller623]

Hydroxychloroquine can cause diarrhea and nausea when you first start taking it. It should be taken with food. I would drink it down with milk (lactose free). My rheumie said putting it in a pat of butter when you take it and it may help with GI problems.

Sorry she’s not feeling well. If she isn’t eating at all, give a ring to your rheumatologist to see if something else can be done like dose reduction or they can give you insight into whether it’s lupus. I’d say it’s most likely the med and not the lupus given temporal coincidence. Hope she feels better soon. ❤️xx

[Tiggywoos]

So sorry to hear daughter is struggling to eat . I definitely lost my appetite and felt nauseated for a few months . I found eating little and often helped . Not particularly healthy I know but I still always carry crisps and little sweets with me in case the nausea wave comes over .I guess it’s hard to explain to an 18 year old she has to eat even if she doesn’t want to ☹️. As Jmiller says I would contact rheumatologist they may have some suggestions .

Take care xx

[Barbara17]

I have lupus which affects my skin (SCLE). I’ve been on hydroxychloroquine for six years now and I find the only brand I can tolerate is Zentiva. It may be worth investigating if your daughter can try another brand? There are several available. I’ve also had sores on my face and it is not all pleasant so I do feel for her and hope things improve . Does she also get ointment? Tacrolimus worked for me although it does take time. There is a wealth of information on this site so please keep in touch. 😘

[GloomyEeyore]

I am on Hydroxychloroquine and can only take the Zentiva brand. Have no side effects at all with it. Other brands made me extremely nauseous and unable to eat. Quinoric brand was the worst. Maybe your daughters GP or consultant could write a prescription for a specific brand so she could try another and see if the side effects go? Xx