Hydroxychloroquine Reaction

[Traveller125]

I was diagnosed with SLE/RA about 17yrs ago. It settled down after a bit of trial and error with meds and had been very stable for many years with just 200mg of hydroxychloroquine daily.

My last annual medication check showed that my white blood count was low so it’s been monitored regularly and 4 weeks ago I was told to stop the hydroxychloroquine incase I was reacting to that. My last blood tests have come back ’satisfactory’ and I’ve been referred back to rheumatology but I’m now worried that I won’t be able to go back on the hydroxychloroquine.

Has anyone had a similar experience or know whether it’s likely I can resume the hydroxychloroquine after giving my body a break?

Thanks

[Largather]

Hi, I was diagnosed 2008 ANA negative SLE. Became positive 2015. I take 200mg Hydroxychlorequine every other day upto tolerance the have a break of a couple of weeks. Also, only take Zentiva brand ( same ingredients as Plaquenil which it replaced in uk). Cannot take anyother brand as have severe reaction. My kidneys are under control. GFR is 78/80 for a few years now, was as low as 19/20. Hope this helps

[field]

I have also been taking the zentiva brand for 20 years and have had no issues with it, it's the only brand I can take, without reacting. Everyone's tolerance is different, so it's often trial and error.

I wish u all the best.

[Traveller125 in reply to field]

Thanks for your replies Field and Largather, it is the zentiva brand I’ve been on. By the time I see the rheumatologist I will have been off them 2 months or so, so hoping the break will reset my tolerance🙏

[Paprika60]

Hi, I am slightly puzzled. If you can stop taking hydroxy and have not been offered any other medication, does it not mean that you are in remission? Isn't that what we all want? Are you feeling unwell since? I only ask as I get unwell everyday (brain fog and weakness in movement) soon after I take 200mg of my daily dosage and I have been begging my doctors to let me discontinue or lower the dosage...and they won't let me. I also cannot take another other brand but Zentiva. Wishing you all the best.

[Traveller125 in reply to Paprika60]

Hi Paprika60, I have some joint pain but been told it can take as long as 6 months for Hydroxychloroquine to get out of your system so I think I’ve still got some protection. The only reason the meds have been stopped is because that appears to be the cause of my low white blood count, not that I’m in remission. I’ll get a chance to discuss the medication options when I see the rheumatologist, though most of the alternatives I tried in the early days affected my white blood count too and hydroxychloroquine was the only one I could tolerate. If I could come off the meds completely I would be delighted but I really don’t want to go back to the stage I was when the SLE/RA first flared up as I was pretty much crippled, with almost every joint in my body affected. I really hope your bad effects settle down eventually, it did take me a couple of years to stabilise

[Riselikeaphoenix_123]

I am surprised that they stopped the hydroxy as I was told that it is important to take because it helps prevent organ failure or at least makes it less likely. The only time that I thought that the change it to maybe methotrexate as if it's affecting your eyes.I am both hydroxy and methotrexate injections. I would ask next time you ho. Good luck. Cx 💜