Extra Plaquenil

[Kismetsoul]

Hi all I have a done something very stupid, I took some extra Plaquenil hoping it would improve my symptoms. I thought if I took extra pills it would control my lupus better and I would feel better quicker, but all it did was cause some very unpleasant gastrointestinal side effects, and a nasty headache. I normally take 400mg a day and up it too 600mg a day for 2 weeks. I am afraid that I now have made things worse I am still having the gastro and headache 1wk later; has anyone else done this, and if so did the side effects eventually go back to normal?

[whisperit]

Hello Kismetsoul

Dont be too hard on yourself. We all get desperate at how ill this disease makes us and sometimes make..erm... suboptimal choices I have twice accidentally taken double my normal dose for a day (ie 800 mg), with no ill effects.

As I'm sure you know, the drug info sheet says you should contact a doctor immediately if you take an overdose. When I did that, I was told to go to casualty, where they did a ECG and then said - stay here until you get bored. That took about an hour and I had no ill effects.

It might reassure you a bit to know that some people are prescribed 600mg daily as a routine. But headache and gastro side effects are amongst those that the info sheet says you should "check with your doctor immediately". So I would do that x

[Kismetsoul in reply to whisperit]

Thank you so much, I really wasn't sure if it was the Plaquenil or just my ever changing lupus symptoms. I did contact the doctor but it's Saturday , so I will not hear back from them until Monday. 😠

Just on a side note I like to thank you for sharing all of your knowledge, symptoms, experiences, and difficulties that you have and continue to have with medical "Professionals". It is hard to come to terms with all of the ever-changing symptoms that we all feel daily; and then have to deal with medical "professional's" not believing us, dismissing us, or just flat-out telling us that if you would just exercise and stop obsessing about all of your so called "problems" all your symptoms will go away.🤬

That was the long, long winded way of telling you that I learn so many things reading all of your posts and responses they always help me. Hoping you are having a peaceful day

[eekt in reply to Kismetsoul]

I wholeheartedly agree, without Whisperit's wisdom, we'd be floundering...a note on Plaquenil: if you notice any change in your sight after too much HCQ, be sure to report it to your doc. The Ophthamologists' institute now recommends a max. of 5mg/kg body weight as incidences of retinal damage are higher than previously thought...though 6.5mg/kg still features in the rheumy guideline

HCQ has a very long half-life, 60 -90 days, so the excess will stay in your system for a good while...hoping the unpleasant side effects dampen down very quickly xxx

[whisperit in reply to eekt]

good points about the eye and long half-life, eekt, thanks for pointing them out x

[Kismetsoul in reply to eekt]

Thank you so much, I will diffinatly look out for that 😀

[whisperit in reply to Kismetsoul]

Aw, thanks Kismetsoul. I'm only doing what I've learned from so many others here. I've had far more help from everyone here than I have from all my medics put together. x

[Joy_1]

There was a post just the other day where someone mentioned that they were on 600mg HCQ a day ........

[Kismetsoul in reply to Joy_1]

I read that also, I'm going to try to find it again and find out if they've had any side effects.

[miccika1]

You'll get back to normal. No worries.

[Kismetsoul]

Thank you for the info, I will be contacting my rheumatologist on Monday.

[eekt]

Turned out I'm intolerant to HCQ (could have told the rheumy that because six tonics one time - which contains quinine, base HCQ, made me the sickest I've ever been - without the gin !)...I tapered up to 400mg over a couple of weeks, and four hours after the first full 400mg, I had palpitations, swollen lips etc...didn't notice the rash till the morning

Yes, it can have very severe effects, but those will appear when the toxic level is reached...and yes, because it's taken up very quickly but has a very, very long half-life there isn't much can be done for toxic overdose but our Kismetsoul hasn't reached the point of no return

I know lots of folks benefit greatly from HCQ, but for me it's just poison, and I'm kind of thinking you might have similar experience?

Not a lot of doctors know about the new 5mg/kg recommendation, and maybe fewer still that it has to be based on ideal weight eg ideal BMI for someone 5'6" is 60kg = 300mg

Sorry, bit of a bore on HCQ after rheumy telling me I HAD to take it despite allergic reactions, and so many people getting on well with it :[ xxx

[Kismetsoul in reply to eekt]

I am so sorry, but I truly appreciate all the information, hoping that you are having a good day...thank you

[LilyMistri2]

Unfortunately I have maculopathy because of taking hydroxychloroquine for 12 years. Keep a close eye on your vision anyone reading this post and see a hospital eye specialist if you feel funny, not a highstreet person.

Kismetsoul you should be ok. X

[Kismetsoul in reply to LilyMistri2]

I have been taking Plaquenil for 7 years. You had said to keep an eye out if you start "feeling funny" I'm not sure what you meant by that? My eyesight has gotten a lot worse since I started Plaquenil, but I am also 7 years older so that my have something to do with it also. I see a eye doctor every year specifically because of the Plaquenil and a small pituitary tumor maybe I should go every 6 months. 🤔

[LilyMistri2 in reply to Kismetsoul]

HI there and yes you’re right to query. In my case what happened was that I noticed when I was facing someone, that I couldn’t see part of their face (eyes). Only if I tilted my head up a bit could I see them eye to eye. I didn’t really connect it to the drugs but one day asked my rheumatologist. He said he didn’t know what it was but asked me to look at a chart which had a grid on it. I told him I saw a circle in that grid. He said he didn’t know how to use the chart. I had a second opinion at another well know Lupus Unit and they automatically knew I had something and sent me upstairs to the eye department where they immediately diagnosed me with bullseye maculopathy. This condition means I have holes in my sight in the shape of a ring doughnut. It is not reversible. I suggest to anyone taking plaquenil to look at the AMSLER chart to keep an eye on their sight. If you see anything unusual in the chart however hazy, talk to an eye specialist. If I’d known all this I would have seen a specialist instead of a high street store. Hope that helps. Here’s the chart. Do read about the chart. cuhk.edu.hk/medint/ovs/pc01...

[suemh2]

I put my hand up to doing something to help relieve pain, extra Tramadol, sent me to a very strange place, never again! In desperation we need something to give relief.

If you have a Specialist Nurse to phone, call them, they will offer the help and guidance from a place of understanding. Always worth. getting it checked to find out if it was the meds, was it a flare/something else.

Hope things improve soon for you.

[dalalf]

I took plaquenil for 6 weeks then stopped as I had a lot of side effects like I lost my appetite and lost 6 kilos and stopped sleeping. Another thing my 2 nephew and niece took quinine as they were in Africa and had macular degeneration due to quinine. My advice check with tour doctor it's important. I have numbness in my hands and feet from Sjogrens and APS there are no medication to improve it.

[Kismetsoul]

Thank you for your response... yeah actually going to see an opthamologist tomorrow my vision has gotten a little wonky and I will definitely bring this up to my rheumatologist