awlI started 200mg/day of plaquenil on May 2th. Was told by the doctor that the med, should help me control the systemic arthrirts(Sjogren syndrome /lupus) after 4-6 months of using the med. So far I have no more energy than when I first started and has developed neuropathy which I have just found out from Web MD that this neuropathy is one of the side effects of this med! MY doctor does not want me to stop. Saying that by stopping this it would take another 6 months to build up the benefit. But so far if gave me no benefit! Please help. THanks.
What is the correct way to discontinue use of plaquenil?
- Posted:
- 12 Nov 2009 by awl
- Topics:
- plaquenil, sjogren's syndrome, systemic lupus erythematosus
Details:
Responses (5)
yerkillinme28 Jan 2010
Please don't stop your plaquenil until you are sure it is the right thing to do and in your best interest. I am on plaquenil but also experience some of the same things you do. There are other meds that can help with what you are experiencing, and if your doctor didn't address that then I would seek out a second opinion... or maybe another doctor if you're not comfortable w/your current one. Plaquenil is a 6-weeker as far as the benefits are concerned, but it would be more dangerous to stop if you spend a lot of time outside and if this were the summer. If you're gonna experiment, I went off it cold turkey as it didn't hurt to do it that way, but you better get back on before the summer or you could experience a flare-up. BUT, I AM NOT EVEN CLOSE to being a doctor, AND I don't know how severe your Lupus is. But when my doc let me try I didn't have a weaning process (I was on 200mg am and 200 pm). I'd rather see you get a second opinion, but I'm telling you what I know because we all do what we want to do in the end.
14 Apr 2010
Neuropathy can also be caused by the Lupus itself. I have them too. I have SLE, Sjogren's APS, Hemolytic Anemia, Heart disease and now the neuropathy in my right leg. It takes a really long time for the Plaquenil to kick in. It may even take a year. Mine didn't start working until I was on it for 8 months and I take more than you do. I take 200 mg twice a day. I initially started at 800mg a day then dropped it to 400 mg a day. Please don't give up, you will have good days and bad days. Try and do some sort of exercise, even though I know it's very hard to motivate yourself, maybe just a little walk around your home. I just walked onto my porch and looked at the nice flowers starting to pop up. I then walked down around my lawn to smell them all and then found myself pulling a few weeds and brushing away dead leaves. Then I had to lay down, but I did feel better that day.
lupy girl2 Oct 2010
Hi
I just joined the site this evening. I was diagnosed with SLE Lupus- three years ago - after many years of being incorrectly diagnosed with numerous other diseases. I have been on plaquenil since May 15, 2007, the day I was diagnosed. My dosage is 800 mgs per day- and it has to be the brand name-only. Additionally, I take 600mgs ( 6 x a day) of Topomax daily for the migraines that were destroying my life as prescribed by my neurologist. Every 3 months, I have botox injected into the back of my head (approximately 15-20 injections during one visit) and neck to freeze the nerve endings. This helps reduce the strenght and intensity of the migraine headaches. I also take a daily vitamin, fiber com, calcium pill, baby asprin, cymbalta (2 x a day), mobic (2 x a day) an anti-inflamatory. I was doing fairly well for a while. The weather would get to me, not resting enough or allowing myself to get to stressed.
10 May 2011
hi,
I started taking plaquenil seven years ago and i feel that it has really helped me, I
feel much better. I know that it helps with the joint pain but it also is bad for other
parts of your body. Lately i feel like my eye sight is getting really bad. I feel it can help you but it can also hurt you. I have stopped taking this medication one week ago. In the beginning i felt like my joint were aching but, i knew that if i would not give into the pain i would get better. well so far i feel good . i want to know if there is anyone that has expirence the same thing i did. I never had a menstol period while on this medication and now that i stopped i am getting my period again. Has anyone expirenced this. Please let me know!
Thanks
msfabtstone
15 Jun 2011
i have diagnosed with lupus sle for 12/13 years and im on steriods which have basically destroyed me i just had surgery and the had to remove 2 inches of my instestines, im also on plaquenil it has mad my eyes very dark some dark spots on my face, my eye sight changes every time i go for glasses my hair fell out not sure if its due to the lupus itself or the meds. but when i stop taking the drug the arthritis flares up really bad like it's doing now so i started back taking them today i can barely walk my feet hurt so bad. I'm a black female. would love some feedback on race, and afflictions with this disease thanks.
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