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.
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.
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..
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 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
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 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.
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!!!
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.
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.
- Plaquenil Information for Consumers
- Plaquenil Information for Healthcare Professionals (includes dosage details)
- Side Effects of Plaquenil (detailed)
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
Posted 12 Nov 2009 • 5 answers
Posted 12 May 2010 • 2 answers
Posted 25 May 2011 • 4 answers
Posted 1 Mar 2012 • 1 answer
Systemic Lupus Erythematosus - Would like to know if anyone stopped taking plaquenil and if they had
Posted 4 Nov 2013 • 2 answers