I was diagnosed over a year ago with lupus. My Double-stranded DNA (dsDNA) was 112, ANA positive and all other lab work was basically typical of a lupus patient. According to my lab work for all of this time (esp CBC and C3 and C4 complements), I have never gone into remission. My lupus has apparently remained active. I have been on Plaquenil for almost a year. It has not helped my symptoms much (maybe 25%). It also did nothing for my labs, meaning it didn't bring my counts up. Rheumy has put me on a low dose of Prednisone. I am fighting taking this drug because my lupus symptoms are more on the mild side. I don't feel I need the Prednisone and can handle the symptoms. Unless I am desperate, I don't take meds. The only thing I am concerned about is that, if I don't try Prednisone or anything else besides Plaquenil, my counts will never go up and my lupus will remain active. I am struggling with this decision - to take it or not. Any thoughts, please?
Good Question. I wish I knew the answer. Do a lot of research and talk with your doctor. I have found that it is helpful to check with others also to see how they deal with flares. Everyone is different so pay attention to your symptoms.
I think it’s trail and error. I know that for me to get out of bed ( most days) I have to be on medication and it will be a part of my life probably for the rest of my life. I have Lupus & Rheumatoid Arthritis , Manic Deppresion, Sleep apnea, panic attacks ect. ect. There have been meds that I could not tolerate and have had to say No to but I trust my drs and I think talking to others and researching the meds themselves it is so frustrating that there is as of yet no end to the treatment and that they are just to treat the symptoms!! God help us and I just pray for a cure!!
Hello Jennifer,
Lovely to hear off you...as you know i've never touched prednisone and it's really for high active Lupus causing bad swelling to joints, organs etc...your question is hard because how do any of we know we're going on the right meds for what level our Lupus is at then you need a pure honest rheumo who is straight and i mean STRIGHT....what amount of plaquenil are you taking if your on 200mg daily it may need rising to 400mg as it does help DLE/SLE.
Love Terri xxx
My doc said I am on the highest dosage he would like to see me on for Plaquenil - 400 mg per day. I also feel Prednisone is a bit aggressive since I do not have high active Lupus causing extreme symptoms. We have to sometimes to our own advocates, so I may have answered my own question. I don't know if Prednisone would help put my lupus in remission and I don't think it is uncommon to have active lupus for long periods of time. I guess if I can handle the symptoms and there is no signs of organ damage, I could probably hold off and discuss it further with him at my next appointment. Thanks for your input, Terri!
Hello Jennifer,
Well your thin like myself so 400mg daily is the likely dosage than can extend to 600mg but that's for members carrying more weight.
Prednisone can alter your personality make you more aggressive besides being addictive and if you don't have high active Lupus if it was my choice i'd leave well alone...it sounds to me like your mainly going through what we all do it's fun playing we up with aches etc.
Jennifer i'd see what else he can offer methotrexate is surposed to be a good drug but you have to have regular blooods took to keep a check on your organs and make sure your liver is ok if you don't have organ involvement, that was similar to the Dapsone i took plus it's a none steriod also.
Let we know how things go when you go to see him.
Hugs Terri xxx