Hydroxychloriquine - first 24 hours worse symptoms?

[FabledPilgrim]

Does anyone remember feeling really unwell when they started on Hydroxychloriquine ? Did anyone's symptoms worsen even temporarily before getting better? I don't want to read too much into it but I'm only a day into it and I'm feeling rough.

[Spanielmadlady]

I've been on hydroxchloroquine for 2 years now.when I first started taking it I felt rough had a bad head every day for a month .I rode it out and have had nothing since.i hope you've had your eyes tested x

[eekt]

Hi FP, watch out for a pin-prick rash that spreads to all-over...but this is what your doc will have said...some people can't tolerate HCQ (I'm one! 😜)...plus there are some very rare drug interactions (that was me! 🙃) ...but your doc will have checked those ...check back in here if you start to have other things going on! and have a good Christmas! xxx

[Jmiller623]

Hi FP. When I started plaquenil, everything got a little worse. Palpitations, rashes, joint pain. So much so that I stopped it. Big mistake. Went back on and stuck with it. Things quieted at about 3 months. By 6 mos, my skin, joints, hair were much better. Full effect noticeable at about 9 mos. I still have nerve issues though.

Plaquenil will also cause you additional photosensitivity beyond baseline. Some have GI issues - diarrhea, nausea - but it never really bothered me that way. I did find that brand name worked better but I can’t find any since COVID stuff started so I’m back to generic.

Hang in there. Things should improve with time. Like Spaniel said, make sure you get an optho exam. Should be tested 5 yrs after baseline is established with initial exam.

[Spanielmadlady in reply to Jmiller623]

Hi J...i know you are in the US but here in the uk eye tests must be every year whilst taking hydroxchloroquine x

[Jmiller623 in reply to Spanielmadlady]

Thanks! Depends on the doc over here. Some do them every year if you have other problems (like my janky eyes) but our guideline says one and done and repeat in 5 yrs. I think it should be done every year. Glad UK knows what’s up.

[Spanielmadlady in reply to Jmiller623]

I know you are medical so didnt want to come across as bossy 😬 but I know things differ between our countries. They do the OCT test here as well and we are given the amsler chart too. Merry Christmas J take care xx

[Jmiller623 in reply to Spanielmadlady]

Merry Christmas Spaniel!!!! 🎄🎄🎄

Not bossy at all. I welcome any and all corrections. Would never pretend to be anyone’s physician on here. Just a loopie loo like everyone else. Plus I’ve learned more from y’all about CTDs than I would from any attending in medical school. Helps me decipher what’s a real problem and what isn’t. I love y’all so much!!!! ❤️xx

[Spanielmadlady in reply to Jmiller623]

Sending love back to you J 😘 xx

[FabledPilgrim]

Thanks for all your comments 🙂

I have a thorough consultant so I don't know whether it was cos of time constraints or what but she didn't discuss the drug at any length and certainly didn't discuss possible side effects or the risk of retinal toxicity which I've learned about through my own research. I'm normally good at interrogating doctors on meds as I'm not that keen on taking stuff but I think I was just overwhelmed by the diagnosis and didn't think to ask.

I've also started Nifedipine which is playing havoc with my internal thermostat.

It would have been nice to have had some warning of what might happen but I'll suffer short term for long-term gains if I have to 😎

[miccika1]

I think it's coincidental. It takes at least a couple of weeks for hydroxychloroquine to start building in your tissues

[CecilyParsley]

Hi FP I was on Hydroxychloroquine for 11 years. I really do not think that the sudden escalation of your symptoms is as a result of this drug. It would not work that quickly. It takes weeks to get into your system so unless you are having a bad reaction like rashes which would indicate an intolerance or allergic reaction to it my advice is to persevere with it. If you are worried ring 111 or your GP surgery for advice. The only issues I had on 400 mg daily was nausea and dizziness a few weeks in which quickly dissipated. Sadly I had a Rheumatologist who increased my dose to 600 mg and I developed oedema on my maculas so I have been unable to take it and I am so much worse for it. Good luck xx

[Fisher50]

Definitely, I've been on these now for about 10 weeks. Yes I felt very rough for the first several of weeks. Hydroxychloroquine does take approx 12 weeks to get into your system. If you've not book to have your eyes tested, I have an appointment in Jan. Hydroxychloroquine can interfere with your vision.

[BonnyB]

Hello. I started hydroxychloroquine a couple of weeks ago.I had a really upset tummy from day 1. Felt more wishy washy(heady) than usual and slight nausea. I had the medication with food at first, then switched to about 30 minutes after food. No idea if I just started to tolerate the medication or the switch or right for me. I've had no improvement yet in my joints,swelling or rash on my face but as someone has said it's 12 weeks before it kicks in. I also split the dose, breakfast and dinner.Hope this helps you a little X