Hi everyone hope you’re all staying safe and shielding if needed.
I was on HCQ then taken off them in March. So recently I have had swollen finger joints and they’re painful. Has anyone had this as an effect of coming off HCQ or is this another problem occurring thanks to my UCTD and Lupus ?
Grateful for any help before contacting my immunologist. Stay safe xx
All I can say is that my joints in my hands improved when I went onto HCQ. My Rheumatologist has tired to wean me off it twice by cutting the dose and both time my lupus flared after about two weeks and my hands got alot worse. I has stiff and painful fingers.
When I eventually increased my dose to 400mg a day my joints and hands improved.
Thank you so much. I’ll call the immunology department tomorrow to see if I can go back on them. Take care xx
Hi loopylupus 🤗 I'm the same as HT
I have tried to reduce hydroxy several times over the years n every time my symptoms have worsened..I have however managed to reduce to 300mgs per day 🌈😽😽xx
Hey there - sorry you’re going through this . Hope you don’t mind me asking but why did u come off them in first place? I couldn’t tolerate hydroxy when prescribed meds by rheumatology, so was on nothing for a while until I met my new top rheumy. He put me on methotrexate (after a month bout of steroids)which really got rid of my swollen finger joints and lesions - and when I came off metho as I was having quite major operations it all came back again, as it has for you it seems. Mind you, it still occurs when I’m flaring - and the joints swell to a lesser degree minus lesions every night. Are yours worse at night? Sleep seems to be very therapeutic, as you’d expect, as improved in the morning. Hope you get sorted back on some meds asap as it’s even worse in the heat I’ll bet! Take care/keep safe etc. D x
Hi thanks for your reply. I diagnosed with mild lupus then they said the HCQ weren’t making much difference even though I’d only been on them a couple of months Shortly after my appointment the lockdown happened so not seen or heard from anyone. Hope you’re feeling ok xxx
i had a horrible pain in finger joints and wrists before starting HCQ, and i still have some mild pain but it's sooooo much better with HCQ. I'm assuming the pain woudl return if I stopped.
My finger joints are stiff and painful My wrists are aching too Hoping they can sort this out today x
Hi I’m on Methotrexate which has taken a lot of the pain away in my joints but my fingers are permanently swollen , this has been the case for last 4 years - hope you get it sorted soon xx
Thanks for your reply. Hoping to hear from them today but haven’t heard from them since lockdown which is understandable. Take care xx
You too xx
Sorry meant to say I had to come off HCQ as it was causing a lot of vision problems for me , was in it about 6 months but I was also on Methotrexate as well so not sure which meditation eased my symptoms x
Hi Ll71, I'm on HCQ (I like that abbreviation as I struggle with spelling Hydrocxiquiclorikquinineqeine) and still struggle with finger joint pain. In fact, I woke up with finger joint pain this morning.
So, there's a high possibility your pain could be due to this.
Thanks. Haha I can’t say it let alone spell it. Thanks for your reply I’ve emailed the immunology team hoping they’ll get back soon x
Hi. I'm on 400mg of Hydroxychloroquine daily and my joints are much improved....I do however find that the heat makes them flare up in the summer months.
Hi. It’s so weird. I’ve always suffered with knee joint problems but fingers only happened since coming of HCQ. Hope you’re feeling ok and the heat isn’t affecting you too much. Take care x
Thankyou yes heat is exaserpating things so on advice staying cool as can. Mine all started with hands and knees but in two years more things. But where hydroxy didn’t seem to help all it definately helped for the short while taken and everything worsened when stopped. My fingers swell all year round but more painful in this heat at mo. Hope if this is reason for yours that you can take again as the relief why suffer if can get some relief and if it improves surely you will know that it’s coming off them. I do hope you get to see or speak to immunologist about this take care best wishes.
Maybe it was just a coincidence. I started with big joints pain like shoulders and then it moved to small joints only. During that time i wasn't on hcq. But after hcq small joints pain improved significantly. I was once off of it for only a week after ni had an eye issue scare and my pain in fingers came back. Once back on hcq i stabilized again that symptom
Definately I don’t know my reasons for problems but yes everything worsened off hydroxychloroquine including hands they really made a big difference to my hands and skin
So strange isn’t it ? Hoping the immunology team give me answers today. Xx
I hope so too good luck 🙏👍x
Hello Loopy. After taking HCQ for about 12 years I had to stop cold turkey style (along with Mycophenolate) as I had to have Chemo. Strangely while on chemo I found that I felt much better.....perhaps steroids did the trick.
After Chemo I eventually had joint pains again so I just started HCQ again...first 200mg and then up again to 400mg. A lot better now , not perfect but I’m rather ancient so can’t expect to be ! Not taking Mycophenolate now. Fingers swollen on right hand but left ok. Left knee v painful at night.
Will stop rambling now......Good Luck !
Thank you for your reply. Glad you’re feeling better. Take care xx
I would say yes to coming off HCQ -try a small dose of Turmeric a day - it builds up slowly - anti inflammatory - brilliant. Look it up. Chronic swollen sore gum during lockdown so I mixed some with toothpaste With Turmeric that night. Throbbing stopped and I slept soundly, swelling gone with two applications 😃
Thanks so much I will certainly try it xx
I tried that and didn't work on me. But maybe it would for you...
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