Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Sunflower13 10/26/2017

Hi everyone am a newbie to this forum . Was diagnosed 8 years ago with cutaneous lupus and sjogrens. My symtoms were malar rash, joint pain and swelling especially of the hands , dry eyes and fatigue . For the past 8 years i have been taking Plaquenil . At first i was on 400mg a day then the last few years i have been taking 200mg a day . Plaquenil has been very good to me . All of my symtoms dissappeared . I felt great . Now the last few months i have had some health issues that pertain to a low immune system. One of my doctors felt that all my issues are from the Plaquenil stating that it was an immunosuppresant . My rheumatologist says that it isnt a immunosuppresant drug. I took the advice of my doctors and started taking only 100 mg a day to see what would happen and to see if it would make a difference . Well after a few weeks my joints started hurting again and swelling and very painful . So i decided to go back on the 200 mg a day . I then began to feel itching only in my back area no rash just itching . I have never had any issues with the plaquenil i take a generic because brand is way to expensive . I am somewhat confused because i have never in the 8 years tried to stop taking it and now this has happened . Has anyone ever experienced this ? Or has taken Plaquenil for long term ? Any suggestions greatly appreciated . Thanks

Sunflower 13

cherokeesister3 10/26/2017

i have been on it for 4 years, for the first two years it helped a little, i still got sick at the drop of a hat. now i have flares about every three months instead of every month, i go to the eye dr. every year, so far no plaquenil deposits, very important to have this checked!! my immune system is still compromised, however, not as bad as it was when i was off it. i have itching in the palm of my hands and my feet sometimes in my mid back, dont know what the correlation is ?? i also have raynauds among other things, i will stay on the plaquenil, it helps me a lot. good luck to you, peace and love...try to keep stress down

Sunflower13 10/27/2017

Cherokeesister3 , thank you for sharing the info . Hopefully this itching issue will disappear soon its just really annoying . It doesn't bother me when I go to sleep thank goodness just when I wake up so am not sure if maybe I have become allergic to the Plaquenil or if it is something else . I wish all the best to you , be well . Please keep in touch . Have a wonderful weekend :)

1StepAtATime 11/26/2017

Plaquenil has been a life saver for me. I’m on 200mgs a day. Whenever I have a bad flare my rheumy has me do a predisone taper. The plaquenil does make me a bit tired so I’m going to try taking it at night..

MieCar91 12/15/2017

Hi Cherokeesister3. You have mentioned that you also have raynauds. What do you feel with it?
I've been experiencing fingertip pains. I dont know what is this in particular. I had some research but I am not sure.

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