Plaquenil - the lupus staple drug
Over the past few years, it seems that a little drug called plaquenil has become one of the major players when it comes to treating lupus. Not only are the side-effects minimal, it's believed that this drug can help reduce joint pain, fevers and fatigue, as well as inflammation, and that it can keep the disease under control and minimize flares. Note, for more severe lupus activity, plaquenil may not be sufficient.
It seems that most lupus patients I meet are currently taking or have taken some dose of plaquenil, me included. You can check out my previous prescriptions 101 post about plaquenil for more information about my experience with the drug.
Currently, plaquenil is working just fine for me - no side-effects, no flares...so all is well. In the past, however, I have had periods where the drug wasn't sufficient, and I also experienced that rare (very rare) side effect involving retinal changes that prompted my opthamologist to recommend that I suspend using the drug for a period of time. My eyes returned to normal, I stayed off of the drug for almost 3 years, and I haven't had any trouble since going back on the drug over three years ago. Fingers crossed - plaquenil is again in my good graces!
Since many of us have experience with the drug, I thought I'd post the poll at the right to see just how the drug measures up. Take a moment to answer the questions at the right - and see the company you're keeping when it comes to plaquenil!
It seems that most lupus patients I meet are currently taking or have taken some dose of plaquenil, me included. You can check out my previous prescriptions 101 post about plaquenil for more information about my experience with the drug.
Currently, plaquenil is working just fine for me - no side-effects, no flares...so all is well. In the past, however, I have had periods where the drug wasn't sufficient, and I also experienced that rare (very rare) side effect involving retinal changes that prompted my opthamologist to recommend that I suspend using the drug for a period of time. My eyes returned to normal, I stayed off of the drug for almost 3 years, and I haven't had any trouble since going back on the drug over three years ago. Fingers crossed - plaquenil is again in my good graces!
Since many of us have experience with the drug, I thought I'd post the poll at the right to see just how the drug measures up. Take a moment to answer the questions at the right - and see the company you're keeping when it comes to plaquenil!
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Thanks
I took plaquenil for 6 weeks and had just started to feel GREAT...no fatigue or joint pain...and bam.... huge allergic reaction that was originally thought to be a flare...but had to spend a couple of days in the hospital on solumedrol and came with lots of steriods. I am down to only 5mg of prednisone now with baby aspirin....but rheumatologist and I are both very disappointed that I cannot take plaquenil again. He said he will never let me try it again.... :(.... I think allegic reactions to it are rare...but I had a doosie... (heavy sigh)
Sigh ......
But thankfully, after 9 weeks, it seems to be sort of working. I'm still tired, my joints still swell without warning, I'm still getting those horrible mouth ulcers that I know you all know about, and my malar rash is only seeming to get worse despite my rheumie telling me it'd get better. But I've reached the wonderful stage of being able to do normal stuff again, like go to the gym, go to those meetings after church and being able to spend real time with friends.
I guess I just have to wait and see what he say in January when I see him again...
So interesting how different doctors approach treatment, isn't it?
We were just discussing at my lupus support group on Tuesday how things are so vague with lupus...there's no cut and dry, no right or wrong...just a lot of trial and error, along with the personal experience of both the doctor and patient. That's why it's so important to have a good doctor/patient relationship, right? You have to tackle the whole lupus thing together, and have a certain comfort level with one another in order to get the best results possible - and those results will be slightly different for everyone. Never a dull moment!
Aymie - As long as you and your doctor are on the same page re: your drugs, and you're comfortable with his assessment, sounds like you're in good hands. Of course - those other symptoms you talk about aren't any fun at all...so stay after him. :) No matter what happens with the plaquenil, don't lose sight of those other issues. He might - but you shouldn't back down! Just so glad, however, you can see the light at the end of the tunnel.
And Lupie - tough luck for all of us about Cellcept, I know. Thanks for the update!
Three days later, I was admitted to hospital, totally paralyzed for 60 hours until iv steroids kicked in.
My doctor's receptionist is horrible.
I also received Rituximab infusions in May, for my platelet disorder.