Had 2 weeks taking plaquenil liquid (one dose a day). I even felt there was an improvement with my joints in that short time! After 2 weeks my dose was then doubled but the day after I started the 2 doses I noticed my joints were aching badly and this has continued. It seems very odd that this has happened and wonder if anyone has an explanation for me!



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  • hi jane , i take the pill form hydroxychloroquine i was diagnosed nearly 6 years ago now this has always been the drug of choice for the lupus department at my hospital , at first it worked well i had a month where i felt there was improvement but then my pains come back . i have tried to have my medication changed to something that works but my hospital still keeps me on this drug . the only advise i can give is give it time and if you still have no improvment push your doctors to have your medication changed . i hope this is of some help to you .

  • thanks for your reply . I will continue with it then and see how things go. I've also noticed I'm not sleeping much at night - between 4 and 6 hours since being on the double dose. Can plaquenil keep you awake?


  • hi again =o) i really am not sure if this is what is causing the sleep dep i go through stages some times i can sleep for england but then other times i can go weeks only sleeping a few hours a night but this started long after i started my meds , if you dont mind me asking what is your diagnoses ? also what area do you live in . i was diagnosed with sle and im from stoke on trent =) always try to stay in touch with other lupies i find we are more helpfull to each other than the doctors are to us hope to keep in touch

    lisa =)

  • hi lisa i am also from stoke on trent and was diagnosed with lupus and sjogrens syndrome 2 years ago even though i had been having symptoms for 26 years! do you know of any suppoer groups in stoke for people with lupus?

  • Hi.

    The Stoke support group had to stop unfortunately because there was a lack of interest. However, there are other meetings that take place around the west midlands. You can find out more at

  • hi paul ,i have had a look at the link you gave me they all seem very far away i do drive but my first thought was for the people who cant and the people who couldnt cope with the travelling . it is such a shame that the support in stoke had to stop but to be honest i didnt even no there was one ! thinking that could be the lack of interest are you from stoke is there anything we can do to get another group up and running do you think ? =0)

  • If you're interested in getting a group running in the Stoke area again, your best bet is to email Yvonne Norton ( she is the chair of the West Midlands group and will have contact details for other LUPUS UK members in the stoke area. She can help you get in touch with them and discuss possible meetings.

  • hi , not that i am aware of paul below informed me that the one we did have closed due to lack of interest , it has actually quite inspired me to see what we could do to get another group together what would your opinion be on this ? =0)

  • I'm from Plymouth and have lupus, Hughes syndrome and osteoporosis.

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