I have never been told exactly what Plaquenil does for SLE. I just know my Rheumatologist put me on it. I stopped going to him because he was so negative and I lost an entire year with my family and friends because I was scared to death that being outside in the heat or cold would make me worse. My family doctor prescribes my medicine now and I only go to the Rheumatologist if I have a flare. I am doing very well but I want to know more about what Plaquenil actually does for SLE.
Systemic Lupus Erythematosus - Does anyone else take Plaquenil for Lupus?
Question posted by kcd250 on 9 Feb 2012
Last updated on 15 August 2019 by Shar5123
I’ve taken it for a couple years. My dosage depends on my flare ups. This is what I found online
Plaquenil changes the way your immune system works. In some kinds of lupus, your immune system attacks your body instead of protecting it. Plaquenil tries to quiet or slow down the immune system.
It does help me
I see someone Spanky in a comment said they have Behcet’s. I have that also and never knew anyone else that had it.
I have SLE, Raynaud's, and what my rheumo calls "autoimmune thyroid disease" (I call it hypothyroidism) among other things. Plaquenil is a good drug once you fight the side effects- I take both at night and sleep through them usually. Unfortunately my lupus is no longer controlled by just that anymore despite what my rheumo says, I have severe memory loss, seizures, and 3 small strokes along with constant headaches and tremors. I see a new dr next week, never be afraid to find someone new if you don't get answers or explanations. Best of luck!
No I do not know why I take plaquenil and I have Lupus SLE
Your Rheumy could have a bad bed side manor, but I found Plaquenil to be my savior. I was being treated by my Endo chronologist for my lupus. Just treating symptoms as they came. That was ok for a while. But, when I moved up to RI from TX, I started having neurological issues. Luckily I found A wonderful rheumatologist and he put me on plaquenil and prednisone. Before seeing him, they thought I had myasthenia gravis, MS, and some other neurological deficit's. I had so many spinal taps I had dysphasia. I couldn't walk without a cane. After seeing so many specialists in Boston, Providence and so many other. I got to my rheumatologist and such a sweet man told me he could help. I take 200mg of plaquenil twice a day and prednisone when I have a flare. And my flares are far apart. My life isn't great, but who's is? I can live this life with help from my doctors.
My lupus also caused me to get a pacemaker at a young age and somewhere in the middle of all that I got leukemia. Those two years were rough, but I got through that. Just last month I had a scare, my white count went to 1.8 and platelets to 92... luckily it was just my lupus. Like I said, my plaquenil makes my life livable with a few speed bumps. Just keep living and don't dwell. I do whatever I want, but the sun... beware that will mess you up! You may just want to find a new rheumy! One you are comfortable with. And be honest and ask lots of questions. Your life can still be good and Plaquenil is a good thing... just keep check with your eyes! Good luck! Sorry I rambled on... As for the plaquenil it brings down all the inflammation that causes most of your problems with SLE.
I've taken plaquenil 200mg over 10yrs for lupus with no problems.It helps with the stiffness in joints and keeps the skin rash away, for me. Good luck to you.
I have lupus SLE as well, I was diagnosed when I was 17 years old. I had extreme memory loss and wieght loss, blood clot ect. I take plaquenil as well and I have been for the past 9 years it works well for me. There have been times in the past when I went without it due to insurance issues and without my body began malfunctioning. Even when I go only a month without it, my symptons start arising and my flares begin. However, I have had some vision issues- similar to vertigo, but it was "confirmed" by my opthalmologist it had nothing to with the palquinel- despite the fact that I've been on it for almost ten years (I'm not 100% convinced, esp. since one of the major side effects of plaquenil after long term use is vision problems). I have googled it and and asked my Rhuemo. but to no avial there is no clear cut answer, I just know that it works for me and without it things start get ugly. I dont have issues with the sun light, but I do however with the cold. But thats the unique thing about lupus, it effects everyone differently.
Yes, my Rheumatologist put me on Plaquenil for SCLE..also said it would help arthritis. Had one breakout last year and used Predesone (sp) for 4 weeks to get rid of it. Just now am experiencing a mild flare up ... just a few spots but am using a cream and they are going away (Triamcinolone Acetonide Ointment) prescribed by dermatologist. Have decided to quit taking Plaquenil after hearing of terrible side effects.
Hi!! I am also a lupus patient and I take plaquniel although I have been on it a while I do not see a change in my symptoms. I have explained this to my dr and he just adds other meds like prednisone and the newest called sulfasalazine. I can not find any information on the new one regarding why it is used in lupus patients. I just started it a few days ago so I don't know if it's helping yet or if it's going to at all. I hope this is helpful for you... Good luck and the best of wishes to you!!!
I was diagnosed with SLE and Fibromyalgia in 1990. I have been on Plaquenil pretty much since then. Plaquenil is an anti-malarial drug and is pretty standard treatment for any Lupus patient. What it does for me is to help more with the internal symptoms, such as the flu-like episodes, fever and chills, etc., that leave me bedridden. I have other medications to combat the joint pain and my other illnesses.
I have been on plaquenil since 1992. I was practically bedridden with chest pain from costocondritis and pleurisy when I was finally diagnosed with sle. The plaquenil made me even more exhausted, and it takes 2 or 3 months to kick in, but it was so worth it. It was a miracle for me. It is used to reduce the inflammation in your body, and inflammation can occur anywhere in lupus, usually in and around your organs, including your skin.
I also have Lupus, but with all my other conditions it has not been treated at all. I always like to hear from folks about what works & what doesn't & make notes as I see my rheumatotolgist on the 28th of March. I don't have an answer for you, but maybe reading the info will help. I have provided a link for you below. Hope this helps to put your mind at ease... Mary
Plaquenil is actually a treatment for malaria but when given to patients with Lupus the patients improved. Over the long term the medication protects your blood vessels which reduces long term complications. I have had Lupus for 23 years. Eventually the side effects abate. It should also help with joint and muscle pain. The first couple of months were the hardest for me. Lupus has affected my lungs ( I have never smoked) resulting in pleural effusions, costocondritis, and my central nervous system. Plaquenil will also reduce the number of flares you may have. Do as much research as you can about current treatments. After 50 years there is now a new medication, Benlysta. The studies are promising. I just began the new medication. I have a good friend who was in the study and she went into complete remission after years of being quite ill. I wish you the very best...
I actually have been taking it for the last ten years..Ive just come off it because I believe that being on it for so long Ive built a tolerance and didnt think it was as effective anymore..But I think it is a good drug for people with lupus. Not sure if your doctor has told you but you do need to get your eyes examined twice a year... good luck..
I have Lupus and i seem to be in less pain when taking plaquenil than without it. But I do have alot of nausea when taking med... and headaches are frequent. Ok to go in the heat just wear lot s of suncreen and a hat. Stay in under a tree or in shade as much as u can.
Cold is no problem usually covered with alot of warm clothes anyway...
I love heavy tights or support hose for extra warmth on ankles and legs.
I really havent had much luck or help with anyone Docs telling me any good answers on what plaquenil does for anything. But I dont want to be on this for ever either.Hopefully , something better will come.
- Plaquenil uses and safety info
- Plaquenil information for Healthcare Professionals (includes dosage details)
- Side effects of Plaquenil (detailed)
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