It’s been ages since I’ve visited. Hope you are all as well as you can be.
I have a question about Plaquenil. I was diagnosed about 2 years ago, and was prescribed Plaquenil. A year in, I changed rheumatologists, because I wasn’t happy with the treatment I received. A little over 2 months ago, my current rheumy took me off the Plaquenil, as the tests she was running were showing no indication of Lupus, and wanted me off it, pending new blood work. It didn’t take long before all of my symptoms returned with a vengeance! Knowing that it takes 1-2 months for it to completely leave my system, I suffered through. Seven weeks in, I couldn’t handle it, anymore. I called my rheumy and begged to be allowed to get the tests done and restart the Plaquenil. I wasn’t supposed to test until early April. She okayed the testing and, after getting the results said I could restart the meds. So, now it’s been 2 months off, and I’m wondering how long will it take to start feeling the benefits. It took nearly a year to work, the first time!
Been there,, done that, it will probably take a few months to kick in before you feel any benefits from it. I know some of us lupies are on plaquenil for life, it helps with symptoms and keeps the lupus from attacking and causing organ damage I hope this info helps, feel better soon,
Unfortunately it may take a few months to get back to where you were. I wish rheumies wouldn't do things like this! It's very common though. You go to a rheumy, they dx lupus, they put you on plaquenil, prednisone, Cellcept, etc. Then a couple of years later, when everything has stabilized they decide you must not have lupus after all, and they take you off your meds! Of course, this is a bad idea. I don't know why they can't accept the idea that meds can make you better, but you still need them to STAY better! :(
Doctors can be really frustrating. Due to moving and retiring, I’ve had 4 rheumies in the 1.5 years since I’ve been diagnosed. I also had to change primary care doctors. More than one seemed unconvinced by my original Lupus diagnosis even though I had the classic positive labs and symptoms! One was hinting that my whole problem was that I needed to get off meds and get orthotics for my feet and get massages. Seriously?
Yes, a year and a half later I’m not experiencing acute symptoms, and some of my labs have gone negative. That’s what is supposed to happen! Plaquenil is stopping the active disease. I’d challenge anyone who wanted to take me off Plaquenil.
Meanwhile, while you’re waiting for the plaquenil to kick in again, can you go back on prednisone? That was the only thing that worked for me the first 8 months while waiting for the Plaquenil to take effect. Good luck and I hope your meds kick in soon!
I have gone thru the same thing over and over also. I a!m now driving 200+ miles to see the internist I had in another stat . Good luck everyone. There are a lot of us with incompetent doctor .
Hi Jazi,
Sorry your having problems with your doctor, I had a problem with
My doctor saying my blood work did not show rests of the lupus, so she look at my pass blood work and continued me on the plaquenil. Your primary doctor can give you a refill if you have a bottle, some will. Try going to a foot doctor about your feet, my feet feel lumpy, gritty and my fingers and toes so dry. I’m going to see another neurologist, they put me on gabapentin and it helps, the gritty dryness is what’s so uncomfortable, I’ve been spending money on so many different kinds of lotion. When I see the rheumatogy and the primary doctor I will ask for medicated lotion and a doctor who specializes in it and have test done, I hope and pray you can get the help you need in Jesus name, be encourage and keep the faith Jazi.
Hi, I have been taking it now for 4yrs., which the last 6mths. , my same doctor since day one, has dropped the intake from daily to three times a week , just to keep it in my system. But he really wants to take me off totally along with the prednisone-which I take one twice a week (for reason of the kidneys , even though there is nothing wrong-safety purpose) , but am not doing THAT !!! BOTH help me . Get ur doctor to put you on some type of pill schedule to get it back into your system. I really enjoy the relief that it gives to me with the imflammation…Beverly L.