I don't know if anyone can help as this isn't technically lupus related. I've been on plaquenil for 6 months for suspected Sjogren's syndrome (I don't have antibodies for Sjorgren's or Lupus but I do have Hashimoto's and have all the symptoms for Sjorgren's so the rheumatologist suggested a trial of plaquenil).
Basically I've been on the drug since January and saw the rheumatologist on Wednesday to see how things are going. I *think* I'm improving but it's been a gradual process and I said to him that it's quite hard to tell how much of an improvement I'm feeling. I do think it's helped with fatigue and muscle pain but it's hard for me to compare to Xmas as when the improvement is so gradual I think it's really hard to notice on a gradual basis.
Anyway he's suggested stopping the plaquenil for a month as he said sometimes that's the best way to tell if it's helping. I took my final tablet Wednesday morning and haven't had any since.
I feel like I'm having some kind of withdrawl to the plaquenil but the consultant said just to stop taking it, that I didn't need to gradually reduce dose etc. Friday afternoon I got home from school (I'm a teacher) and pretty much slept from 4pm through to 7pm and then was asleep again at 10pm right through until 9am Saturday morning - I haven't needed to do that for ages! Yesterday afternoon I slept again from 4pm - 6.30pm as I felt so exhausted. I woke up last night feeling really nauseous and then I went into town this morning to meet a friend for coffee and came over really dizzy with my hands shaking etc and had to come home and now I'm back I still feel nauseous and constantly light headed. Also the muscle pains in my legs have been much worse than normal over the weekend.
I'm basically wondering if I could be having withdrawl effects from the plaqunil and if anyone has heard of this before? I know the consultant said I could feel worse once I stop taking it but I wouldn't have expected to see such a change just since Wednesday? I'm just freaking out slightly as I've got a super busy week at school coming up with sports day and the like and at the moment feel like I can barely stand up
Although testing antibody negative for Lupus at Xmas in the last 3/4 months I've had a butterfly rash come up across both cheeks that is really noticeable and the consultant could clearly see it on Wednesday so he's going to write to my GP to get my antibodies retested just in case. I'm just wondering also if it could be possible to have lupus and not have a positive antibody result?