Why oh why did u stop taking plaquenil

Hey all, I'm totally kicking myself. I started taking azathioprine about a year ago along with steroids, plaquenil, pain killers etc and, apart from the pleurisy which will not shift, I was feeling generally better. So in my wisdom (and after getting an awful cold type thing recently) I decided to stop the plaquenil so I was taking a little less medication. And I feel awful, the worst of which is the tiredness, I'm back to feeling drunk because of it in the evenings again. To top it all off we're taking the kids to Disney in 2 weeks and it's a big surprise and I just hope to god I feel better by then. I guess because I've been taking it for so long I just thought it was useless. Has anyone had a similar experience and does anyone know how long it'll take for it to work again? I'd stopped it for about 10 days that's all. Thanks x

20 Replies

  • If there is one drug to not stop unless it causes damage, it is Plaquenil, why did you pick that one instead of steroids, say?? It shouldn't take you long to get back on, weeks, a week or two, I think but it depends on the dosage you were on and the activity level of your lupus at the moment, it could take longer. Next time, try and come off the steroids instead - but speak to your doctor first!!

  • Can I please just state here that stopping steroids can be incredibly dangerous and should only be done very gradually with full supervision from your physician.

  • I have just done a little googling and it seems the half life of plaquenil is 1-2 months. this means that if you only stopped for 10 days, it was not totally out of your system so it may kick back in quite quickly.

    I'm guessing and of course I'm not a medical doctor - but why not have the best case scenario in your mind, and hopefully that's what'll happen.

  • Thank you for your replies. I picked it as I'm only on a really low steroid dose at the mo and I genuinely thought it wasn't doing anything. It's hard when I take nearly 40 tablets a day to know which is doing what. I knew the steroids and immunosupressants and pain killers were all working so I chose plaquenil. Stupid stupid me. I just hope you're right and it will start to work again quickly. I suppose there is a chance it's coincidence but I find it unlikely and certainly won't be stopping again unless I have to. X

  • I think we are all guilty of this to some extent, feel well and think you can cut back on the medication. I know I have.

  • I completely agree, did the same thing, " this is way to many pills I need to cut back on something , the lower the # of pills we take someho makes me feel like I'm doing better so I can cut this out or that out. Then I decided I feel great must mean I'm in remission" two days later my respitory system started shutting doen" my Rheumy was really mad. Then I got the bright ideas of doing this naturally , all vitemens based on another holistic drs approach. Same thing , this time dr came to the hospital and calmly expressed you feel better because of the meds. Every pill I prescribe for you has a job to do. Take one pill out of the equation and everything will work differently . It's normal to think your cured when your feeling better. He said I promise I will be the first one to tell you when you can cut back or stop. Until then , trust we know what we are doing . The pain meds give you a false sense of security. Keep that in mind. ( never thought about that either ) my point is your not alone in your thinking!

    Take care



    Not just for men, for anyone effected by these crazy illness !

  • Thanks again, guess I'm paying the price, taken it again this morning and now got the god awful side effects I'd forgotten about. And just realised the title should say I, not u! Lol.

  • I've also done this in the past and regretted it. I am so glad you made this post because I was thinking of reducing my imuran. Your post made me remember what happened the last time I did that.

  • Hi I was diagnosed with subacute lupus a year ago and put on steriods 40mg reducing then plaquenil. I was so eager to get off meds as i didnt want I think to have lupus. My steriods were down to 5mg for a while whilst i was waiting for plaquenil to kick in (about 3 months) so once i came off them i was keen to come of plaquenil. Kept telling my doc i was fine and reduced dose from 2 tabs to 1 tab. Came off completely last sept big mistake!! My body became lifeless i was tired all the time loss of appetite then my spots on fingers devoloped. By christmas all my joints were affected and i was reffered to a rhemuy who said why did i come of plaquenil??? The long and short of it is i am now on 5mg steriods and 400mg plaquenil and i will not stop the meds again as this time my lupus has affected me more than last time. Stay on them they really are making us feel well x

  • Never and i mean never come of Meds unless you have been told by the medical profession. Its a hard lesson to learn, hope you are O/k and have a nice time on hols


  • Awwww jennywren444. I see your frustration at the fact that your already taking so many tablets & you prob thought just one less tablet right?

    I know we all want to be med free. But please be careful (not lecturing you or trying to make feel bad)

    Keep taking ur meds & consult your doctor on which is the best way to change ur med's around without it having bad side effects. I keep hearing that Plaquenil is really good for us...

    Get well in time for Disney Land x

  • Hi Saran28, thanks for your post. I have recently come off Steriods (have been on 5mg for the past year) and was also very keen to come off it too. Was estatic when doc said I can come off them and was hoping I could stop the Plaquenil soon after. But now that you mentioned about the spots on your fingers and feeling tired I'm worried I may have to go back on the steroids. And cause my doc thinkd I'm doing well he's now changed my 6week check ups to 3months...are there more symptoms to come and should I contact him with my concerns as I dont wanna wait 3months and end up worse....(just when you feel your taking a step forward but then three steps back...huge sigh)

  • I haven't got this experience but can imagine what you must be going through. Hope you feel better soon - and that the trip works out just 'purrfic.' xxx :)

  • Oh dear, hope you feel well enough to have a good holiday with your children, hopefully given the Plaquenil may still have been in your system it wont take too long to get you feeling well soon.

    All the best


  • DaleDiva and Davidj summed it up really. When the drugs start making you feel better you start to wonder if you can do without taking them all or can reduce the dosage. I rarely take painkillers simply because I want to be aware of what is going on with my body and I'm lucky to have developed a high pain threshold but this isn't always a good idea. If you are in

    any pain it is likely to reduce your activity and this will have other side effects. All in all, best to stick with your doctor's advice. Having had a big reduction in my lupus problems over a number of years, I did gradually come off Plaquenil. As mentioned by others, you are unlikely to immediately suffer the negative effects of stopping the drugs as I was told that Plaquenil is stored in the liver for quite a while after you stop taking it.

  • Well, I've started taking the plaquenil again and I'm happy to say that after 5 days of horrible side effects I'm feeling much better on it. Thank you to everyone who replied and for your support. I hate burdening my family with my illness all the time and sometimes you just need to ask someone who has had the experience themselves. Thanks again and take care x

  • Such a big help, reading how so many people on here , have at some point tried reducing their medication. After 6 months of intravenous chemo and high dosage of steroids and whole list of other meds- 2 years on and after gradually reducing the steroids down to 5 a day and was doing well , so thought l would try stopping them altogether. BIG MISTAKE ! and l paid the price within a few weeks with terrible flare. My Renal const was so understanding and explained l am not the first patient to try that approach and l won't be the last! Now l know to listen to his sound advice as he knows best and whenever he can reduce any of my drugs he will do , so from then on l leave everything in his capable hands.

  • I stopped taking plaquenil after totally losing my hearing in one ear overnight. I stopped taking a number of potentially ototoxic drugs at the same time.

    Azathioprine didnt seem to agree with me either. But sometimes I think it has just as much to do with the total combination of drugs that you make be taking at any time. A potential toxic timebomb.

    imo just because A & B & C has passed trials and been deemed to be effective, it doesnt necessarily mean it is safe to take A + B + C etc.

  • Hi, what an interesting post. I have just got back from hol in Cyprus and whilst I was there and feeling very relaxed (I guess due to the meds and away from it all) I thought too that perhaps it was time to cut down on the placquenil and just keep taking the methotrexate. I am presently on 400 mg daily of placquenil. I have tried to cut down before and managed to do it for a few days without dreadful side effects so went back on it. This time, as daft as this sounds, I only managed until about 4 hours later as I had bad stomach pain, chest, neck muscles and ended up just taking my normal dose. I would not have thought that this would have had such a fast impact as this but it really did. I worry about being on the 400 mg daily of placquenil due to the damage it can do to the eyes and I really like reading. Since then I thought it would be best to seek the advice of the rheumatologist when I next see her. It is clear that the placquenil is affective but given that I have never really needed to use medication before I still struggle emotionally with the idea of needing it. I wonder if the pain was just simply due to withdrawal from the med and in time things would stabilise. I hope in time I can cut down as it is horrible to think that they will have to be taken permanently. I think the advice above is really sound though and I will heed this. Thank you:)

  • Reading all these responses with the same experiences really gives me peace of mind :-) Finally, just this year, after a rollercoaster ride of several misdiagnosis, I was finally diagnosed with Lupus. Its good to know that one is not alone in this battle. And I am glad to read that we all learn as we go, for I have experienced somewhat of the same things. My struggle has been both physical and mental when not taking Plaquanil as prescribed. I am also a rebel when it comes to pills, so I have a hard time being consistent and I have paid the price.....Paying the toll though emotionally/mentally is what scares me, when not taking plaquanil correctly. Is it just me?? Lol I still have yet to learn and adjust to the disease but any feedback would help!!! Sending love and peace.

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