When I was first diagnosed in Oct 2013 I was put on Plaquenil and Prednisone. My Rheumy told me it takes 3-6 months for the Plaquenil to become effective and in the meantime the Prednisone would manage the symptoms. I was getting discouraged because after 3-4 months I was unable to wean off the prednisone and my doc was concerned that she was going to have to try me on something stronger than Plaquenil. I hung in there with the Plaquenil...and last week I realized I felt pretty good on a very low dose (2.5 mg) of prednisone, so we decided to stop it...... I am 5 days off prednisone now with NO LUPUS SYMPTOMS!! I havent been off of prednisone for more than 24 hours since October! The Plaquenil has kicked in - and it did take almost the full 6 months.
So, for those of you out there just starting Plaquenil - be patient!!
I've been on Plaquenil for 11 years now... and I go off and on with Prednisone... hate that drug, but it's the only thing that will get my Lupus Nephritis back on track! It's the best feeling weaning off of it though and finally being able to stop it everytime!
I am on Plaquenil as well. My rheumy did the same thing as you. Started Pred. first and then did Plaquenil and it took me about 6 months to me get off of pred. I only take pred. if I have a really bad flare which isn't too often. I think I only took the pred once maybe twice this year. I take 5 mg pred. if I have to and only for 1 week generally does the trick. I found out with Lupus it can sometimes be trial and error. But you have to hang in there and finally it will get somewhat better. It never goes away though.
Good luck to everyone just starting out - hang in there! After 5 months of wondering if I would ever feel better again, I want to tentatively say I feel "good." I can visualize myself working again, maybe trying to get back to a somewhat normal life. As recently as a couple of weeks ago I was wondering how I could possibly work when I couldn't get out of bed. Lets hope this good phase lasts a long time!
I am glad i have u guys in my life because i have been afraid to stop the press because I’m afraid of the results but you have provided me with the courage to at least try to wear myself off of the preds. I have been on the paquenel for months and have yet to really experience any symptoms so I’m going to give it a try. Tomorrow I will be pre free and find out where I end up. One blessing is at least I can always start again and obtain refills. Thanks again .I learn more about this disease from you guys than from my PCP and he is a good doctor
THANK YOU Nikki for this post....I really needed to read this today.......I just started Plaquenil for the second time in Dec. so it has been about 3 months in for me.........I have been wondering if it is actually going to do better than this for me ! LOL I do feel better .....but it seems like I have some sort of issues/symptoms almost every day.......I too am off the prednisone unless I am having a really bad day .....so I haven't had to take it very much though all this.........Right now I am just hanging tough through all the mild symptom days !!! So..... if I can hang tough about 3 more months things are looking good !!! There is light at the end of the tunnel .... and it is not always the train ! LOL
