I've stopped taking my medication

I have been on Hydroxychloroquine for the past 6 years and from 18th May 2013 I've stopped taking it. I have always hated taking medication and when I was told that I have lupus and had to take this for the rest of of my life I was devastated.

Its been 4 months now and I don't seem to be affected by not taking it. Did anyone else stop taking their meds and how has it affected you? and how long after you have stopped did it affect you?



18 Replies

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  • I wish I could. I have tried cutting down on the hydroxy placquenil but aches/pains/fatiigue seems too bad so just continue. I hope too eventually to come off but maybe it wont happen.....I accept that now but still live in hope x

  • I'm on hydroxychloroqine because I have Hughes syndrome (APS) and not lupus. I too tried to stop taking it but the fatigue and arthralgia came back with a vengeance in about three months and, when I started taking it again, I had hair loss like I did when I first started taking it :( I've learnt that I'm just going to have to live with it, but hope you have a better story to tell :)

  • I too missed a few days from time to time only to wish i hadnt missed a dose or two! The pains and aches and sickness all came back with a vegengence! I dont miss my doses now! It is sad,frustrating,scarey and hard to think that there is no cure,but try to look at it at a different way! You are still here living your life and still being able to tell your tale. Take each day as it comes. I try to look at it this way. I had breast cancer two years ago and being on chemo i nearly lost my life! I have sjogren, sle and a bag mixture of everything else. Recently my rheumy has put me on steroids, its heaven, and also i am still here to tell my tale. If you ever want to chat i am here. Just msg me in my inbox. Try stay positive. Sending you a (big hug)

  • Me too I did and ended up having urticaria vasculitis and now I regret it. I am back on 400 mg and feel ok. Fingures crossed it might be different for you. Take care and don't lose hope. Xxx

  • yep i did that , hair fell out, aches and pains and sickness came after about 3 months , i think we think its not working because it does ease our lupus symptons ,i battle every night when taking it, ive been back on it since june 13 after a 6 month break only 200 at night as i chose that and i dont get cluster headaches nomore and seem to be less side effects but obviously every lupy person is different , you havent said if you take any immussupressants have you come off them to ??? hope ive helped

  • Hi Guys,

    Thank you for your responses. I am a bit scared now, because everyone who came off seem to have had a very bad experience. I feel great and have not had any symptoms! For the past two months I have been cycling to and from work. I live in East London and work in Mayfair area and a month ago I joined British Military Fitness so I have been exerting myself quite a bit and have not had a flare.

    I am not taking anything at the moment except for a multivitamin (pharmaton). I will resume the Hydroxychloroquine if I start feeling poorly but hope I don't ever have to!

  • That's fantastic. Long may it continue

  • As long as you keep having your check ups and blood tests it is ok. Have a word with your doctor about it. I have sle, thyroid cancer and epilepsy and lots of other things. So I am use to meds. hope u feel better. goodluk.

  • I am right back to square 1 and stopped meds over monnth ago but had only been taking for a couple of weeks. Good luck

  • I tried just lowering my dose by one third as i was having some pigmentation on my eyelids and upper back. The doc said to try lowering my dose. Reluctantly i did and muscle and joint pain came on quickly. my hair was coming out after about three weeks. Maybe a month. I went straight back to doc to say no way! So I'm still on 200 one day with 400 alternate days. I hope I never have to come off it. It's my miracle drug. I do get regular eye exams though as I have low vision and glaucoma. So it is a worry. One day at a time. Good luck xx

  • On the advice of my Rheumy,I stopped taking Hydroxy 12 years ago. My Lupus had been quiescent for a couple of years prior to that. My Lupus has flared this year & it has been a nightmare trying to reaccess treatment. My new Rheumy seems to think I should never have stopped the Hydroxy but I think 12 years drug free can only have benefited my body! Good Luck!

  • I stopped taking the meds for a couple of years. Couple years back a had a flare, since I was diagnosed at a young age and was about 14/15 when this flare came, I didn't know what was happening, I didn't know about the beginning flare symptoms, I had that rash on my face, lost a lot of weight because I couldn't eat anything. Every time I tried to eat I would just puke it back out. Had a low fever, couldn't see for more than 2 hours, had a hard time falling asleep and a low graded fever all the time. Ended up going back to the hospital (it wasn't my choice to stop, my father stopped taking me to the appointments). But even though I went through all that, I still don't really take the meds, only when I feel that a flare is coming. So.. Yeah. But then I still go to my appointments. Once every 6 months.

  • Hello, thanks for posting this. I also have confirmed SLE and made the decision not to continue with medication.

    I was diagnosed 4 years ago and my consultant put me on methotrexate. I had a severe allergic reaction to it, so of course had to stop taking it. I also spent about a year on steroids and plaquenil. Like you I have a real problem with taking drugs and being told that I'd be on medication for the rest of my life was devastating and the side effects of taking them were just awful.

    My body had become accustomed to taking the medicines and I had a period of severe illness when I stopped taking them. Now I haven't taken medication regularly for 2 years, I still have flare ups, still have recurring infections (which tend to lead to going on 'short' courses of steroids when I finally give in and visit the gp, after months and months of not being able to clear the worst infections), still have exhaustion, bouts of hair loss, joint pain...blah blah blah etc.

    It's impossible for me to tell whether I'd be any better or worse off by taking the meds, especially as the side effects were so vile.

    My main question is whether taking them, on balance with the immediate side effects and various long term serious side effects, leads to a longer and healthier life? Because surely (for me anyway) if taking them DID lead to a healthier life, that would be the point in taking them. No consultant has been able to answer that, which has left me not being able to justify taking them.

    I've found that lupus seems to be all about the meds and if you don't take the meds for whatever reason, you find yourself in a pretty lonely place. Consultants can't offer any help, GPs don't really have a clue about SLE, family / friends etc don't really understand and / or think you must be fine anyway if you're not taking medicine, which is why this post is so refreshing in a way.

    Personally I've really struggled to accept the diagnosis, having always tried to be fit and healthy and I'm sure that's partly why I stoppec taking the meds - meds are for sick people.

    I hoped Lupus would go away (and it does...til the next flare up...or until I try to do more than my usual daily grind and then pay for it all too severely. I Lupus almost impossible to talk to friends and family about (I can't do "poor me") so when I'm really ill there's the occasional reaction of "what's it called? That thing that makes her a bit off sometimes. ..Yes maybe it's to do with that". I don't help myself really in that respect! But as far as the meds go, if there was a magic pill that took away all the symptoms, didn't have side effects or long term health risks. .I probably would be taking it....maybe ;-)

  • I think exactly the same thing, I am 17 years diagnosed and feel that meds are like benefits there to help you through the rough time but not to be relied on forever. I am very lucky I have great care from my Renal consultant and he keeps a close eye on me it's like a chemical balancing act. When you have to fight for your life you appreciate it more.

  • I have been on lots of medicine plus Infusion for SLE Lupus and I'm looking at not taking my meds any more. I was diagnosed 2010 and I do not feel they are working. And tired of being a guinea pig. I will see doctor in November and will let doctor know what I want to do. What to try natural pills like tumeric, chlorella, chaga mushroom. I want to detox first. Wish me luck.

  • I have not taken my meds since November 2014. I have been with lots of aches and pain.

  • I stopped taking plaquenil at the end of December. Honestly, my symptoms were just as bad while taking it, if not worse. I started it in September, so I didn't have any real withdrawal or anything. My symptoms have been less since then, but there are other factors like diet and exercise to consider. Healthy fats from salmon and vitamins from leafy greens will help. You might also want to take turmeric curcumin for inflammation.

  • I also stopped taking my meds almost a month ago and I've been feeling better. No pain, no rashes or fever and no dizziness. Even my eye sight got better. My only problem is chest pain but I still had it while I was on meds. I am a little bit concerned after reading these comments. I havent spoken to my doctor, because I dont wanna take pills again.

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