HCQ finger joint pain: Hi everyone hope you’re all... - LUPUS UK


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HCQ finger joint pain

Loopylupus71 profile image
25 Replies

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

25 Replies
happytulip profile image

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.

Loopylupus71 profile image
Loopylupus71 in reply to happytulip

Thank you so much. I’ll call the immunology department tomorrow to see if I can go back on them. Take care xx

Krazykat26 profile image
Krazykat26 in reply to Loopylupus71

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

DJK99 profile image

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

Loopylupus71 profile image
Loopylupus71 in reply to DJK99

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

miccika1 profile image

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.

Loopylupus71 profile image
Loopylupus71 in reply to miccika1

My finger joints are stiff and painful My wrists are aching too Hoping they can sort this out today x

svfarmer profile image

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

Loopylupus71 profile image
Loopylupus71 in reply to svfarmer

Thanks for your reply. Hoping to hear from them today but haven’t heard from them since lockdown which is understandable. Take care xx

svfarmer profile image
svfarmer in reply to Loopylupus71

You too xx

svfarmer profile image

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

SurferGuy profile image

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.

Loopylupus71 profile image
Loopylupus71 in reply to SurferGuy

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

Janet-Haslam profile image

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.

Loopylupus71 profile image
Loopylupus71 in reply to Janet-Haslam

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

stiff19 profile image
stiff19 in reply to Loopylupus71

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.

miccika1 profile image
miccika1 in reply to Loopylupus71

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

stiff19 profile image

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

Loopylupus71 profile image
Loopylupus71 in reply to stiff19

So strange isn’t it ? Hoping the immunology team give me answers today. Xx

stiff19 profile image
stiff19 in reply to Loopylupus71

I hope so too good luck 🙏👍x

bones-bones profile image

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 !

Loopylupus71 profile image
Loopylupus71 in reply to bones-bones

Thank you for your reply. Glad you’re feeling better. Take care xx

Cas70 profile image

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 😃

Loopylupus71 profile image
Loopylupus71 in reply to Cas70

Thanks so much I will certainly try it xx

miccika1 profile image
miccika1 in reply to Loopylupus71

I tried that and didn't work on me. But maybe it would for you...

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