Powered By
I have CLE and was prescribed hydroxychloroquine. I have been reading about the medication and it seems that it work better for those who have SLE. Can those of you who are diagnosed with CLE and take hydroxychloroquine tell me if it helps with flares?
As of right now, I have decided not to take it. My rheumatologist does has not taken interest in my concerns.
Please be careful when not following the advice of your physician. I have had SLE Lupus for many years. Unless what you "heard" came from another physician I would ignore it. As you go through this disease you will hear all kinds of nonsense from genuine, well meaning people. Get "The Lupus Book" you can find it on ebay for $5 dollars used. Written by a physician, it covers CLE & SLE with information backed up by actual medical studies. As for your health being tested, all of us go through this. It isn't easy but EVERY case of Lupus is different. So they "test" to see what combination of medication works for you. The fact that hydroxychloroquine is our main medication is sad. This is a anti-malarial drug that is more than 70 years old and the mechanism by which it works is still unknown. I have been on it since 2008. My plateets are back up in the normal range. Without hydroxychloroquine suppressing my immune system, my white blood cells kill my platelets and my red blood cells. So without hydroxychloroquine I bleed very easily and I am anemic.
So, yes it will alter your various blood cells numbers. But the other medications to suppress your immune system are much stronger and more dangerous due to kidney & liver risk.
All of this is frightening and sadly it can get worse if untreated. Ignore people who have read a magazine article & diagnosed themselves. Ignore anyone who says it can be cured with diet, or supplements, or anything else. You will hear all of these things sooner or later.
Sorry for such a long reply. It's just that all of this comes from my own experience. Lupus is exhausting enough on its own. Advice from people that don't know what a ANA & DS-ANA, SSA SSB or any of the other blood test are; that's even more exhausting.
Plaquenil actually made my psoriasis worse & made me anemic. So, my skin looked pretty bad while I was on it.
Great question — and it's completely understandable to want to know if hydroxychloroquine is right for your specific type of lupus before committing to it.
Hydroxychloroquine is actually prescribed for both cutaneous lupus erythematosus (CLE) and systemic lupus erythematosus (SLE). For CLE specifically, it can help with:
@A MyLupusTeam Member Thank you for replying. Right now I dont trust my rheumatologist. She has not seemed very receptive to me. I am going to look for a new one... When I asked her what subtype of CLE I have, she blew me off and just said its cutaneous. I have done quite a bit of research on CLE so to be dismissed regarding my question was hard to deal with... I am very involved in my health care so when I have questions, I want them answered. Also, she made a comment that she is sure I have CLE but it sounded like there was doubts. I had a biopsy completed by my dermatologist and the lab results said cutaneous lupus... I have never been a medicine person so I need definitive answers before I start taking medication. I am trying to navigate this life altering diagnosis and it would help if I could trust the person providing my care.
@A MyLupusTeam Member I do hope you can find a provider that listens and takes your concerns seriously. Lupus is painful and so is invisiblity. These autoimmune diseases will have you taking several medications at the same time. It is not only side effects but drug interactions that can happen. Like others here it took a long time to get the right combination of medications for me. We all get our own version of Lupus,& same for our meds. Best wishes.
Join
Your Privacy Choices
