Hi I have SLE had it for 27 years and have not taken any thing for it just started taking Plaquenil. (Hydroxychloroquine) Is there anyone out there that has been on it for a while and if so has it helped them. I just never feel well so I am hoping it will help.
Thanks
Hi, I've been taking Plaquenil on and off for a number of years and it's always worked well for me. The only problem is it takes about 6 weeks to kick in. I'm having a flare right now and have been taking it for the last 3 weeks so it's not quite working yet. It's a lot kinder than steroids so if it works for you it's a good thing. Long term it can affect your eyes so get regular eye tests. Fingers crossed it dies the trick 🤞
Thanks that is good to know.. What do you mean when you say you are having a flare?
Most SLE sufferers have periods of remission with little or no symptoms and then periods when the condition flares up and you get loads of symptoms and feel rough.
I can go months with no symptoms or very mild ones like mouth ulcers, dry eyes and maybe a bit tired. When it flares up I get anything from extreme fatigue and debilitating joint ache to massively elevated liver function readings and jaundice.
So great to know someone like you can go without taking any medications for so many years without major lupus symptoms issue. I had to take so many medications to manage the disease. Do you take any supplements regularly?
Been on it about 10 years now, it works for me but I’m sure the flares would be worse without it, I had to drop down to one day because my GP surgery wouldn’t give me more zentivia as I couldn’t tolerate the Ipca one so I cut it down.it certainly did affect me doing this, my skin broke out instantly. Fatigue came back as well. It certainly keeps mine under control. Occasionally I do need steriods if I get joint swelling.
It took about 6 months to have any effect for me. I am slightly less fatigued on it. I had to stop it for a month last month due to eye issues and I noticed how much more fatigued I am off of it. My eyes are ok so I went back on. Only thing I find with Zentiva is that I get very constipated so I can only tolerate a dose of 200mg which is a pain.
Hi Elise. I have been on hydroxychloroquinne (brand name Plaquenil) for nearly 30 years. It has helped me control symptoms a lot but it is not a magic bullet. It has reduced the number of times I have been on steroids. I think it is a real help. However, I would recommend you ask if you need eye check ups while on it and heart monitoring (an annual echocardiogram or an ECG for example). Good luck!
Interesting. I was just diagnosed in 2019 and only take 20mgs a day. I just wonder if I could ever stop taking it as it did darkened my neck and chin….. last year my doctor said I didn’t need it and 2 months later I was losing hair like crazy again, then took me like 5 months to stop it.
I’ve been on Plaquenil for a couple of years…it has helped with some things, like sores and rashes, but unfortunately not others. It’s supposed to help with joint pain and fatigue, but I haven’t had any luck in that department! Be aware that it can take a few months for the meds to kick in full strength. Good luck to you x
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