Okay so geez I feel really stupid. I was feeling better for several months so I decided that I must be well and quit taking plaquenil. I was okay for a while but now I feel absolutely horrible. And really stupid, and embarrassed. Oh course I didn’t tell anyone either. Has anyone else ever done this ? I guess I just need to figure out how to forgive myself . any support would be appreciated and yes of course I’m going to start taking it again .
Don't feel embarrassed or really stupid. NOW you know that taking this particular medication helps you. Lesson learned. Move on.
Well, the great news is that you now know that plaquenil really works for you. That’s actually a huge bonus. Sometimes we don’t realize how bad we were feeling until we feel better. You just did it the opposite way.you’re actually very fortunate. It can take a very long time to find the right right meds that make us feel better.
I am new to this site so hello to all! I am 65 years old and was diagnosed at age 62. I think I had Lupus since I was young though. And yes, I have thought about stopping my meds but a friend of mine did that and she got really sick. I have repeatedly asked my doctor if I could quit but he just says, "I wouldn't do that" ! So, don't feel embarrassed and just start up on your meds again!
Ellen
Lupus is not something that will go away in time. It's a forever illness that is only controlled by meds.
Stopping your meds was not stupid, it was just frustration. Now you know that plaquenil really works for you.
Stop and smell the roses now, keep moving forward, and make the best of what it is.
You're gonna be ok!
Hugs ((())) to you!
Some days I sleep all day long and forget to take my meds. I can tell when I do. The Dr said I could stop the methotrexate. I’m excited yet Leary . Time will tell
Of course I’ve done that… With the same result! hugs
Been there, done that…a few times!! 
I did the same thing twice we live and learn so chalk it up to a learning experience. { I am a nurse and should have known better}
First of all thanks for all the great responses. funny thing after I talked to all of you, I came clean with my daughter who is also a nurse. She laughed, and kindly said “mom do you know how many patients I see who fail to take their meds? and some of them actually die.” I’ve always been so good about taking my medicine, but I got angry a while back because I just didn’t feel like it was working well enough and that’s why I quit taking it. So you’re all right, now I know and I’m back on my meds. Thanks again for all your support .
Just to add one another perspective not mentioned yet… It is always a patient’s choice, at the end of the day, whether to accept treatment or not… But it’s extremely important your doctor and those around you know you decided to stop! They need that info to respond appropriately if something goes wrong (and of course tell you the proper way to taper off/back on!) As a bonus, it’ll feel much less embarrassing if you are open about your intentions and later acknowledge your hopes for being better (what everyone would hope, also your doctor of course! They just have more knowledge of the risks and a more cynical view on whether it’ll work.)
After it hasn’t worked, anyone who criticizes with an “I told you so” stance is a jerk and doesn’t understand how tough it is to be condemned to take a drug with significant side effects and known burden for your liver! You have the right to take the chance and learn for yourself if you need or don’t need the medication, and discussion with your doc allows you to have the best knowledge of the risks while you make your decision.
I think a big part of going against a prescribed treatment is wanting to feel in control–the illness and our autonomy–so asserting your decisions should help with that. Whether you are talked out of it or not, you affirm it’s your choice and changing your mind means making a different choice based on additional info. In this case you did find some definitive info… But probably feel ashamed because of sneaking. Own it from the start and you’re exploring, not hiding 
And of course when exploring, it’s important to leave a note about where you’re going so the rescue mission can come help!!
Glad you’re ok and I hope going back on it helps (the big thing to be careful of with chronic illnesses is staying ahead of it… If you have a backslide it can take a lot heavier treatment to get back to where you were, and if it were a major flare, there’s a chance of lasting damage that won’t recover!) And thanks for sharing your story with the rest of us… Unlike a doctor’s jaded reply that it’s not a good idea, we get to see that an optimistic true fighter gave it a shot, but found negative results! It’s a lot more meaningful than simply words of caution.
Brynn
Faladora said:
Just to add one another perspective not mentioned yet... It is always a patient's choice, at the end of the day, whether to accept treatment or not... But it's extremely important your doctor and those around you know you decided to stop! They need that info to respond appropriately if something goes wrong (and of course tell you the proper way to taper off/back on!) As a bonus, it'll feel much less embarrassing if you are open about your intentions and later acknowledge your hopes for being better (what everyone would hope, also your doctor of course! They just have more knowledge of the risks and a more cynical view on whether it'll work.)
After it hasn't worked, anyone who criticizes with an "I told you so" stance is a jerk and doesn't understand how tough it is to be condemned to take a drug with significant side effects and known burden for your liver! You have the right to take the chance and learn for yourself if you need or don't need the medication, and discussion with your doc allows you to have the best knowledge of the risks while you make your decision.
I think a big part of going against a prescribed treatment is wanting to feel in control--the illness and our autonomy--so asserting your decisions should help with that. Whether you are talked out of it or not, you affirm it's your choice and changing your mind means making a different choice based on additional info. In this case you did find some definitive info... But probably feel ashamed because of sneaking. Own it from the start and you're exploring, not hiding ;) And of course when exploring, it's important to leave a note about where you're going so the rescue mission can come help!!
Glad you're ok and I hope going back on it helps (the big thing to be careful of with chronic illnesses is staying ahead of it... If you have a backslide it can take a lot heavier treatment to get back to where you were, and if it were a major flare, there's a chance of lasting damage that won't recover!) And thanks for sharing your story with the rest of us... Unlike a doctor's jaded reply that it's not a good idea, we get to see that an optimistic true fighter gave it a shot, but found negative results! It's a lot more meaningful than simply words of caution.
Brynn
Brynn, thanks so much for your wonderful words of wisdom. What you said really hit touched me. Thanks so much for taking the time out to respond. It really means a lot, Marti (short for Martha )
Ann A. said:
Absolve yourself and move on. Of course other people have done it. No one really wants to believe that they have an incurable disease. It takes a while to get there. Took me almost a decade. No you are not alone. You are just a human being with optimism. And do not give up hope. Right now I do not need the medicines (the clue for me to stop them is that they were clearly making me feel worse and so I weaned off with supervision). But no, you are not alone. I am glad that you have not lost your optimism and hope. Don't be too hard on yourself.
Thanks Ann! I’m so down most of the time I guess I didn’t even realize I had optimism LOL!
Jend719 said:
Well, the great news is that you now know that plaquenil really works for you. That's actually a huge bonus. Sometimes we don't realize how bad we were feeling until we feel better. You just did it the opposite way.you're actually very fortunate. It can take a very long time to find the right right meds that make us feel better.
I hope you have or will very soon why is the meds that work for you !
I did it for several months until my doctors BEGGED ME to begin taking it again. I figured it must be crucial if they begged.
Ive done the exact same thing more than once with more than one med. The exact feeling of thinking I dont need it because of feeling better, fear of side effects, but in the long run finding it to be a mistake in doing so. Dont beat yourself up. We live and we learn.
Hi! I tried that back in late Dec-Jan and that was a total mistake! I did tell my doctor that I had done that and he was like Why did you do that? My reply of course was I don’t want to take meds for the rest of my life, he looked at me like sorry but you got to ! The words that he said was painful for me to hear , but hey the truth of the matter is Yes the meds will always be a part of my Life . He also suggested that if I don’t take them daily make sure that out of 7days that I take 1 pill 3of those days ! Only so my body won’t reject the med! Well all I know is there was a major change without them, talk with your doctor…Beverly L.