View Full Version : Going OFF Plaquenil??

07-11-2009, 01:40 PM
There's a much bigger story here, which I'll tell in another forum soon. But my question for now is if any of you have gone off Plaquenil, and if so, did your lupus get worse without it?

In a nutshell, my lupus seems to be in remission, which I still can hardly believe. The Sjogren's, however, is very active. The rheumy said I can stop the Plaquenil since the labs showed so many things in normal range, but the thought of that terrifies me. I've been through hell the last three years since I was diagnosed. Really, the hell started before I was diagnosed. But now that I'm feeling good and I've ben on Plaquenil since November 2006, I'm scared that everything will fall apart if I go off. Isn't it because of the Plaquenil (and other things) that I'm at this place? Wouldn't it all fall apart without it? Or is the goal to get off Plaquenil and when the symptoms lessen it's the right time to do it? I know I'm rambling...sorry...I do that when I'm stressed and worried, lol.

07-11-2009, 04:46 PM
I went off of plaquenil in July of 2007 and Ive been fine without it I dont recognize any difference I usually do pretty well with my lupus I range a flare every 2 to 3 years so thats not bad. Dont worry u will be fine off the paquenil. As a matter of fact celebrate:yes:. U deserve it. I wouldnt worry, like I said Ive been off for 2 yrs now and I haent noticed anything significantly different. And my reason for being taken off is because I ended gaining a allergic reaction to plaquenil. So I cant take it if I want it, lol. But the fact that test are showing positive things for u means that u r well and thats very good. I wouldnt worry I'd just thank God :yes: I hope what I told you gives you a little insight


07-11-2009, 05:34 PM
Congrats and Chriss is right, you should celebrate this milestone. If it makes you feel any better, if you go off of it and you start to feel bad again you can go right back on. You already know that your body responds well to it. I had to go off of it due to the fact I ended up with a horrible rash from it. I was already feeling yucky when I went off of it so I am not a good judge on that part. Just remember we are all here and we will support any decision you make in regards to your meds. Good luck, congrats and keep us posted!!!!!

07-13-2009, 08:22 PM
Chriss and Danica, this really helped me - thank you SO much!! I didn't know anyone who has gone off Plaquenil, so this makes me feel better. I still can't believe the lupus is in remission, it's what I've been praying for, but now I feel so scared that I'm going to get a flare again and it will all be as it was before. I just had blood drawn again today, so I think I'll be more ready to celebrate when I get these results back and everything is still okay. I guess I'm guardedly excited and celebrating for now!

I am still going to take the Plaquenil for another week, just to be sure. My friend is coming in town on Wednesday to visit me for a week, and I don't want anything to go wrong while she's here. As it is, she was supposed to come last Christmas and I was in a major flare so had to tell her not to come. I want so much for us to be able to have fun without my health getting in the way. Then once she goes home, I'll stop the Plaquenil and see how it goes.

07-13-2009, 09:02 PM
Remember, stress and worrying can throw us into a flare. So, when you find yourself thinking about all of this, just sit down and breathe. Focus on how far you have come and how much you are looking forward to your friend visiting. You will get through this and you will stay in remission for as long as you are supposed to.....maybe forever!!!!! Your story gives me hope and I should be thanking you for giving me something to look forward to. I wish we were all there to celebrate with you but celebrating through our posts will just have to do :angelic:

07-13-2009, 09:08 PM
hi brandichi,

let's celebrate your possible remission. I know that rastagirl has been in remission for many years....i am not sure if she has discontinued the plaquenil....i am sure she will be along very soon and will be able to let you know what worked for her.

congrats brandichi, i hope you are smiling every day.

07-14-2009, 02:23 PM
Thanks, guys. :cute: I am feeling more like celebrating and I am truly appreciating every minute that I feel strong and more like myself. And celebrating here online is perfect!!! I''m out of practice celebrating in real life anyway, lol. I am excited about my friend Jen visiting tomorrow, and she totally understands about my limitations and doesn't care a bit if the house isn't perfect. Which is good, because it's not gonna be, lol :)

Danica, definitely do have hope. I was told by my first rheumy a year ago that I would never be any better than I was then. At that point I was not doing well at all, still in a lot of pain from arthritis and overwhelming fatigue. I could barely manage to work all day, then I collapsed by 5:30 every night, and would force myself to get off the couch at 7:00 to make something for dinner. Before that, I had been on the neubulizer 4 times a day because of lung involvement. So if I could move through all of that to this remission, than you absolutely can too...and I can't wait to read your post that you're there!!!! :yes:

07-14-2009, 08:08 PM

I can understand how you can be nervous, but trust me its time to P- ARTY!!!! You are gonna be just fine. I hope you and tour friend have a blast!!!


07-15-2009, 07:29 AM
I tried to go off plaquinal a year ago and it didn't work for me, so I went back on. But I would for sure try to go off again if I was feeling able. The less meds I'm on I think is the best.
Good luck to you and I hope you can stay off.

07-15-2009, 07:45 AM
Branchi....Just a thought to ponder, not a party pooper... since your Sjogren's is very active..Plaquenil is used to treat some of the symptoms of Sjogrens too...inflamed joint and muscles. But since it is active, will it become more, or perhaps try another regimen.


07-15-2009, 08:44 PM
Pam, if you don't mind sharing, what happened when you went off the Plaquenil? Did it send you into a major flare? How long did it take until you knew you needed to go back on? And how long did it take after going back on until you felt better?

Oluwa, that's exactly what I was thinking...that since Plaquenil is prescribed for Sjogren's as well as lupus, and since it's so active right now, is it really a good idea to stop taking it?? Although I will say that my joint and muscle pain is almost down to zero now, and I can't remember the last time I could say that - even way before I was diagnosed.

Is it strange to say I celebrated by cleaning today?? Probably, huh? But that's what I did today. I got up at 6, cleaned the bathroom, mopped the kitchen, decluttered the kitchen, finished straightening the guest room, made the bed, and vacuumed the house. The celebration is that I could DO IT, and that was totally impossible before. I can't say I enjoyed it, but I felt like I really accomplished something. Now if only I could ENJOY cleaning as much as I enjoy being online! :)

07-15-2009, 09:51 PM
Cleaning makes me feel good because it means I have enough energy to do it!!!!! Thank you for sharing your story with me. I have a nebulizer right next to my bed and I still have to use it. The lupus caused me to have severe asthma.......do you have asthma too??????? I would love to be able to breath easy again. You know what is funny......I don't remember what it feels like to have a pain free day. It was soooooo long ago. It such an everyday occurrence. I am so happy your pain is almost 100% gone! I look forward to that day! By the way, you are doing very good with the whole celebrating......we are just getting you ready for your friend to visit!!!! Keep us posted on how you are doing once you start going off you plaquenil..........also, think about what Oluwa said and you may even want to call and ask your doctor about this again, just to be sure :veryhappy: It is better to be safe than sorry! I am thinking about you tonight and sending you soooooo many hugs to celebrate your news :hug:

07-29-2009, 12:36 PM
curious..my doc wants me to start Plaq. have any of you had tremendous success with it?? I am very leary, do to my MANY allergies..I don't need another "rash" or worse. I really want to consider if the benefits out weigh the possible risks.:skeptical:

dassar RN
07-29-2009, 02:52 PM
congrats to you!!! I just wanted to know how long did the lupus take to go into remission.

I am very happy for you.

Dassar RN