Have you ever just stopped your meds. I mean just quit taking them. why do you think you do that? I mean Im just as guility and Im caught up in the cycle now of not taking my meds. I know there have got to be others out there, now wether they are willing to admit it or not is a different story. wht excuses do you tell yourself or how do you justify not taking them. And if your like me you take your meds for awhile and feel better feel good and then the next thing you know it's been 2 mnths since you had any and life sucks.
I could not do this with predisone, was always told have to be weaned off predisone. Would love to stop all meds but had to stop methtrotrexate for three weeks months ago and I couldnt move due to pain. I wonder do the 14-18 pills taken daily actually help?
I have never, ever thought of skipping any of my lupus meds… I’m fortunate not to have many side effects and SO relieved at how they’ve taken me from miserable condition to a point where those around me wouldn’t know I’m “sick”. There was one med I was instructed to stop, by a doc at the ER (then confirmed by my rheumy too), due to the sudden, severe nausea/vomiting it caused once I had tapered up to therapeutic dose (this was CellCept aka mycophenolate.) Rituxan infusions worked great, with minimal side effects (plus you can’t “quit” a long-lasting infusion 
) The steroids I’m on have never given me too many side effects because 1) I’m not taking all that much, and wasn’t even before starting my taper off (a year ago… It’s been slow-going and I can’t get past the current level I’ve had the past 6mo) and 2) I’m on methylprednisolone, a prednisone derivative that is more potent as an anti-inflammatory and immune suppressant but less disruptive to endocrine function and other side effects. I was getting a little fuzzier and having some muscle wasting, but was terribly thin instead of gaining weight (got down to 10% below my “ideal weight”, 2 clothes sizes down from my normal which is already quite slim.) That point was when I was the sickest, and since the steroids were helping turn it around, I didn’t dare quit! Plus, quitting steroids suddenly is super dangerous.
HOWEVER, I will admit reluctance and “forgetfulness” about taking some of my other meds… Psychiatric ones. I tend to be very cautious/resistant to dose increases, or especially new drugs on the list. I was talked into a second mood-stabilizer (that has more side effects than the other one I’m still on.) Although it does have pretty unpleasant side effects, I have to admit it is actually working (at the higher dose, when I had been hoping/wishfully thinking the lower dose was going to be enough…) Having bipolar moods is pretty awful, but in this subjective hard-to-see-from-inside-it way that makes it much harder for patients to follow their doctors’ best advice. The area where I’m REALLY obstinate is regarding anxiety and sleep meds. Ok, I can agree with putting in a medicinal version of bowling bumpers for my moods… And keeping my sleep regular is almost better than the meds for keeping my moods stable… But for some reason I hate the idea of taking sleep aids or anxiety meds. For one, they are addictive, not just abuse potential, but also loss of your body’s ability to self-regulate sleep… But mine’s already horrible at it anyway so why worry about that I’m so paranoid about addiction and so sensitive to low doses that I won’t become an abuser, but I like to hang onto at least a shred of my own biorhythms. I’m on the alternate-day dosing of steroids to facilitate that, but in all honesty, I should come to terms with the fact that what little I had of a sun-responsive biological clock (the way we keep on a sleep at night schedule, and bipolar folks have an impairment with this process) has been shot by the steroids and avoidance of daytime sunlight! So yeah, I guess my psychiatrist is right I should take some sleep meds to set my sleep to nighttime to keep my moods steady and allow function in my life which will lead to less anxiety and thus less need for meds… My acupuncturist also reminds me often how important it is to be asleep at night, during the yin peak (my initial treatments with her were for yin imbalance… Relates to both my moods and lupus.) Acupuncture also helps with sleep regulation, and guess what, I haven’t been going! I even like that treatment! So I’ll be making an appt shortly!
So yes, as you can see, even as an avid participant in managing my health, knowledgeable about the benefits outweighing the downsides… I am often reluctant about meds for certain indications. I’m glad you’re bold enough to bring up this honest topic 
Brynn
Only once have I stopped my meds without the doctor’s ok. I was around 20 and couldn’t afford them and I paid the price for that. Plaquenil wasn’t available as a generic and was really expensive. I learned my lesson the hard way. I have stopped my anti-depressants with my doctor’s approval. I didn’t need them until my youngest was born, then got hit by post-partum. Ever since then I have been on and off of them. I didn’t need them for a few years, then I slowly slid into the gray void again. Now I just stay on them. My kids need a level headed mom and my husband deserves a wife who isn’t intensely irritable or crying in bed. I see my psychiatrist in a week or so and will either be increasing my meds or adding another one as the cellcept is bringing the depression back. I think that having kids around serves as a daily reminder to take my meds, plus I’ve been on them forever. When you start taking them as a child, you grow up with it as normal. There have been many times when I’ve gotten frustrated and tired of taking them but I just remind myself that the side effects are worrh it.
I have done this often when after a few weeks I start getting side effects worse than the condition the pill was supposed to treat. I have often gone through nasty withdrawals for it too though.
I’ve weaned off the Prednisone, it’s dangerous to stop taking that. I’ve never stopped taking my meds. I’ve had side effects on some that had to be stopped & replaced by my Rheumatologist. It’s too dangerous to stop your meds “cold turkey” especially if the Lupus that affects your major organs.
I am also guilty. Sometimes, I honestly just get tired of swallowing pills. I went to the doctor and complained that my mouth and throat were so dry, I feel as though I need to remove cotton or something and my pills were getting stuck. She prescribed another pill for the dryness. Then switched me to an injectable to replace one of my pills. I took the injectable and my arm hurt for 4 weeks. The side effects are my main reason for discontinuing any medication.
I have stopped taking my mess in the past for approx. 3 months until my doctors begged me to take it because my kidney was removed due to kidney cancer. I also stop taking my preds sometimes for 3 or 4days JUST BECAUSE I sometimes want to feel NORMAL. I make no excuses.
I’m guilty,it’s not that I don’t take my meds,however I do sometimes take them they way I want to,not the way the doctors want me to…I know that sounds bad,but to be honest,I forgot to take my afternoon doses a lot.As most of you know my husband is a Lt/firefighter/EMT,He gives me all kinds of grief over the whole pill thing,He says,it’s people like me that like to play god with their meds,are people they go on 911 calls too.so it is a sore subject in our household…I will not take prednisone period ever again…I will not take antidepressants or anxiety meds…I will not take anything that makes me feel out of control…it doesn’t help that I’m type A control freak with OCD…I do not like to drink and I really don’t like pain meds,"Don’t I sound like a lovely lupus patient??? I have spent yrs in and out of the hospital.so many problems and many surgeries…sometimes I feel like a science experiment.I think people with lupus are very in tuned to what is going on with their bodies."I feel like I know what is best for me at the time I make the choice I do with my meds…it doesn’t mean I’m right…it is what it is…At this point in my life,I want to do what I want to do!! I’m not getting any better and life is short…
Survivor4ever
I 'forget' my meds alot. To be real honest, I get in moods where I just don't want to take them. Two years ago, I didn't take anything. Now I have a pill reminder box - I don't like it. I 'forget' on the weekends alot, and then when I go back to work on Monday, I take them when I first sit down at my desk and start working, And then the Savella I take upsets my stomach, and I feel justified for not taking it over the weekend. Duh, if I would take it over the weekend, it wouldn't be as bad on Monday when I resume.
I understand how you feel. For me, its just a resentment I have against the whole Lupus-thing, that I fall into. Its like the ostrich sticking its head in the sand. Forgive yourself.... being sick is not your fault. Not taking the meds, does not make it go away. I'm going to listen to my own advice, and go take my meds : p
I dont know Iwhy i get in these ruts where I just quit takimg my meds 18 - 20 a day and I only 43 years old. I just get tired of taking meds I hate he weight Ive gained, I refuse to take predisone because I told them I could not be held for responsible for my actions because the predisone makes me feel like I could litterally kill someone. I know that when I takew my medicine responsibily I feel better and when I don't I get suicidal jst like I am now. And to be honest I can't afford them sometimes.
Celeste, this post is a response to something you put into words clearly but that also applies to many people here who refuse their meds, especially without consulting a doctor! They can encourage you to take them, but if you adamantly refuse, they can at least help you wean off safely, work to find alternatives, and at least make notes in your record so that when you show up at the hospital in a crisis they know what’s going on. This is no joke: if you’ve suddenly stopped long-term steroids and you have an accident or injury, your body won’t be able to go into shock, a protective mode that will keep you alive. You are basically putting yourself in a position that a broken leg would likely kill you.
I don’t mean to sound harsh, but to challenge the strong opinion Celeste put out there… If you’re not cooperating with treatment, how would it be possible for it to improve as much as you and your doctors hope? So saying “it isn’t getting any better” doesn’t make any sense. To me it sounds like giving up on fighting for wellness instead of taking control of anything! It’s often true that the meds we’re on aren’t helping as much as they should (and again, there’s no way they can if they aren’t taken properly), or the side effects are intolerable. But that’s all the more reason to work WITH your doctor to find other options… Unlike in the past, there are many options now to try! Some with very minimal side effects. I’m on a cocktail of 6 daily, previously more than that, and a half-yearly infusion treatment. My side effects are minimal, mostly gas and bloating as well as dizziness if I don’t sleep long enough to sleep off my night meds. If I get off track with my dosing, that’s when all hell breaks loose and I start to really have bad effects.
Also, specifically for Celeste’s post regarding the mental health component (but I think many of us fall under this same category! I’m full-on bipolar with anxiety), I know antidepressants are prescribed for long-term management of anxiety and also for OCD if I remember correctly… I’m not sure if you meant that is an official diagnosis of yours or just a character trait (character traits don’t need treatment… But a disorder is when the pattern starts to interfere with function in your life! I’ve dealt a lot with defining that shady boundary, so I really feel for you on that!) It sounds like this is very much interfering with your relationship, and it’s important to remember it hurts others close to you when you don’t take care of yourself or let them help you.
Can you re-focus the need for control to needing to stick to your treatment and seeking more options for the best outcomes? However, the thing I would recommend most to anyone with lupus, and especially the frustration you’re describing, is to learn to let go of the need for control and bend with it, letting questions go unanswered sometimes, tolerating a great deal, but also springing back to fight for a brighter future by managing your illness. Letting go of stress isn’t easy, and it’s not something you just do, it has to be practiced (meditation is one of the best ways and has medical evidence if benefit for many illnesses!) I think anyone wanting to achieve mental wellness, most of all without meds, needs to maintain some deliberate practice of letting go and finding the joy in living that lupus can’t shake. It’s worth the effort because it’s so essential to preventing continual reactivation of lupus, which is strongly triggered by stress!! A great inspiring start, which features frank discussion of all the ugly and painful parts of this patient’s experience rather than just happily naive advice from an outsider: the book “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard. I’ll get off my soapbox now, but please, it really does matter and you really can feel better, at least in loving life and yourself and the rest of humanity even when you never “get better.”
Faladora,thank you so much for the advice,I do believe we have a small misunderstanding,I’m not unhappy with my life at all,I have an amazing husband,very supportive adult children,a very beautiful home in the country,I can shop and travel as much as I like,and I think at times the denial helps me live a happier life,I do have some serious issues with pills because my mother has been drug addicted my entire life…I do talk with someone about it,I watched pills destroy my mother and she will never be the same,roller coaster rides of anti-depressents,anxiety meds,pain pill,it has had a profound impact on my option of pills,I am always looking for other healthy ways to make myself feel better,I’ve lost mega weight,I went from a 18 to a size 4 and I have been able to maintain this weight for 5 yrs now,I shop at whole foods and new seasons,mostly organic.not much meat…I do not believe my OCD bugs my family at all,I just love everything spotless in my home,I do not tolerate any kind of mess,everything should have a place…I’m very detail oriented.my children are like that as well…I’m a planner and I’m a stickler for being organized …it makes me happy,messy things make me unhappy…I have had to seek help for this,and can leave a dirty dish in my sink without freaking out now…“not for very long”…I am a work in progress…I’m trying every day to not let the little things send me over the edge…fishing season starts soon and that is my way to relax,and I love to shop for shoes,I have about 300ish pair…no joke!! I do love all the great advice I get here…thank you…