Red/purplish lumps on hands that look like chilbl... - LUPUS UK

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Red/purplish lumps on hands that look like chilblains that only come out in the heat which are sore - Anyone get these with their lupus?

Spicer21 profile image
41 Replies

Hi,

I get red/purplish lumps on my hands (randomly on my knuckles and sides of fingers) that look like chilblains which only come out in the hot weather. They are sore and sometimes itch like chilblains do - Does anyone get these lumps with their lupus? (Mine disappear when the weather cools.) I am undiagnosed and also get pink/red flushing for no apparent reason across my cheeks and nose...but often it's just one cheek, with or without my nose flushing too.

Thanks in advance.

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Spicer21 profile image
Spicer21
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41 Replies
drcl profile image
drcl

Hi, I get these too (though I also sometimes get them in winter!) - they go away by themselves after a week or so. I am also undiagnosed though, so I don't know if there's any connection with Lupus. Sorry I can't be of more help!

Spicer21 profile image
Spicer21 in reply to drcl

Hi drcl,

Thanks for replying. Mine go away by themselves after a week or so too, when the weather has cooled. They usually leave behind a little bit of rough skin that peels off...it's a bit like the way the skin heals after a burn.

Do let me know if you ever get a diagnosis - I'll post up again on this thread if I'm eventually diagnosed.

shareasmile profile image
shareasmile in reply to Spicer21

Are the bumps painful when they first appear? I get red, tender bumps on my fingers. They are ouchy the first day or so, then just red bumps that don't hurt. After several days they kind of make a rough patch or pit that sometimes I can peel off, like you said. I am quick to take pictures when it happens, but no doctor has ever been able to explain these to me. Sometimes I get red spots on my nose, too. I have read about bumps like this on sites for Raynaud's, so I attribute them to that mostly. But funny that no doctors seem to know what they are.

Spicer21 profile image
Spicer21 in reply to shareasmile

Hi shareasmile :)

Yes my lumps are quite painful when they first appear and continue to be so until they start to subside/get smaller...usually when the weather cools down. (I have to find other ways of flossing my teeth as it's painful to wrap the floss around my fingers and it hurts to use a knife and fork to eat.)

I think the trouble is that docs regard such lumps as insignificant, a minor irritation at most...whereas they could be a symptom/sign of something underlying that's actually quite significant and are actually somewhat difficult to live with. I like it when we have a cool summer as it means that no, or fewer, lumps come up.

I'll post up what they are, i.e. if I ever get a diagnosis.

Many thanks for your reply.

seanto profile image
seanto

YES YES AND YES. I get this but I am un diagnosed. I also get this on my feet, ankles and sometimes my legs. weirdly got it on my ass the other day. I find I mainly get it when I have a sudden change of tempture as I find my body doesnt quite understand how it could be warm in one place but suddenly cold in the next. In which it reacts by giving my lumps that I like to call hives which also leave me itchy. gp was kinda enough to give me some anti histamines for it.

Spicer21 profile image
Spicer21 in reply to seanto

Hi seanto,

Thanks for replying. I don't get them anywhere else on my body other than on my hands but, as you say, it's definitely due to sudden changes of temperature. I used to think it was also to do with being out in the sun - and therefore involved light sensitivity - but my latest crop of lumps came up when the temperature rose and I hadn't been out of the house at all for a few weeks (due to being bedridden because of a flare with another medical condition that I suffer with). Do the anti-histamines help? - I believe I've tried them in the past but they didn't make much, if any, difference. Might try a different type of anti-histamine to what I believe I tried before. (I've been getting these lumps for years, but never thought that I might have lupus.)

seanto profile image
seanto in reply to Spicer21

weirdly I never tried the anti-histamines as like two days after I got them the weather went for a nice change and I didnt end up needing them. Its only with in the last few days that I have thought of finding where I put them to try them out as my symptoms have come back. I know there somewhere in my room just not sure where which probably wasnt a smart move, i should get med box.

Spicer21 profile image
Spicer21 in reply to seanto

If you get time, do let me know how you get on taking them. Atm I only have one small lump on one knuckle...will suffer that for now and reserve trying an anti-histamine when I get more of them, when/if the weather gets hotter again.

seanto profile image
seanto in reply to Spicer21

At the minute i have non but mine only tend to last a few hours at most but i could get it multiple times in one day if unlucky. Had some eariler today though. Im hoping if i find the meds they will prevent that happening. Though I'll let you know how it goes once im on them.

Spicer21 profile image
Spicer21 in reply to seanto

Thanks, seanto :)

LuckyJC profile image
LuckyJC

Yep, I get this. GP thinks it's something called pomphylx/Dyshidrotic eczema. She gave me some steroid cream which has helped hugely. Haven't had it since

Spicer21 profile image
Spicer21 in reply to LuckyJC

Thanks LuckyJC,

I've just looked it up and it's somewhat like I experience but not quite...the lumps I get tend to be larger than the photos that I've seen of it on the Internet and more purple and don't occur on the palms of my hands, but mainly on the knuckles and the sides of the fingers...And there's always an association with the weather, i.e. they appear when it gets hotter - especially when it suddenly gets hooter. Steroid cream could be the answer to taming it though; they use it a lot for skin conditions, don't they? I'm due to see my GP for a repeat prescriptions review so I think I'll ask them about it them. Thanks very much for your input/reply.

stacieann1989 profile image
stacieann1989

Yeah! I get these quite often, they're itchy and annoying! I seem to get them on the palms though! X

Spicer21 profile image
Spicer21 in reply to stacieann1989

The nearest they get to my palms is at the bottom of my thumbs - had a nasty one there a few weeks ago. Have you been diagnosed with lupus Stacieann? I still wonder if what I'm experiencing is some kind of lupus rash.

stacieann1989 profile image
stacieann1989 in reply to Spicer21

Hiya, yes I have been diagnosed with lupus just recently. But they believe it's "inactive" due to lack of symptoms but at the moment things seem to becoming active :-( hope you get some answers as to what the rash could be. Make sure to take photos and record when you seem to get these rashes, for example in cold or hot weather etc to show rehumatologist. X

Spicer21 profile image
Spicer21 in reply to stacieann1989

Thanks Stacieann. I'm sorry to hear that your lupus seems to becoming active; I hope this will only be a short blip and subside very quickly. My husband's taken some photos of my hands but they haven't come out well; wish I'd got some photos done a couple of years back when the rash was very extensive and very purple, but, at that time, I didn't think I might have lupus. Thanks again for replying. xx

Dida profile image
Dida

Hey there!

I got that once or twice, (thing is, it was merely a discoloration, no other symptoms). It went away by itself after a week or so. That being said, i did visit a dermatologist. I don't think he was able to diagnose it though, because he told me that it was probably a bruise, although i don't remember hitting myself anywhere. I'm still not sure what it was till date, but I'm fine now. hope it turns out just fine for you!

Spicer21 profile image
Spicer21 in reply to Dida

Thanks Dida,

Glad yours went away by itself. My lumps always disappear when the weather cools. I can kind of cope with it when the lumps come up but it's not pleasant...However, I am particularly interested in whether it's a symptom of lupus. Sounds like it could be from some of the replies I've received. Thanks for your reply/input.

Patricia2015 profile image
Patricia2015

I get them too, in my case they are on my eyelids and on the base of my thumbs. My GP says it is hidrotic eczema and I should keep the skin fat (not dried out). However after months I returned to the GP and he gave me steroid cream. After than they disappeared in a few days.

I have a probable UCTD diagnosis.

Spicer21 profile image
Spicer21 in reply to Patricia2015

I get them on the base of my thumbs too. How are we supposed to keep the skin from drying out? Sounds like I really do need to get some steroid cream from my GP - Will have to pick a time when my lumps are bad as, knowing my GP, they'll be dismissive and won't want to treat.

I'd never heard of UCTD before - Have just been looking it up and it could fit me.

Thanks for replying Patricia.

Patricia2015 profile image
Patricia2015 in reply to Spicer21

My GP suggested to wash my hand less often. Unfortunately that is difficult for me as I have an overactive bladder cq urine retention so I have to wash my hands a lot of times.

But the washing theory is not totally waterproof (LOL) as I certainly don't wash my eyelids or my face often, only once or twice a day.

Dismissive doctors? Welcome to our club... we are here to help each other because doctors don't help us.

Spicer21 profile image
Spicer21 in reply to Patricia2015

I agree with your sentiments re dismissive doctors, Patricia. I too don't think I can possibly wash my hands less often than I do...not without risking food poisoning! Will see if my GP will give me some steroid cream, but will have to wait till my hands look really bad to convince them it needs treating.

Patricia2015 profile image
Patricia2015 in reply to Spicer21

Good luck and don't forget to take pictures of your hands before treatment to be able to show it to a rheumy.

Spicer21 profile image
Spicer21 in reply to Patricia2015

Thank you - and will do :)

Nikki246 profile image
Nikki246

I get them as soon as the weather warms up. I've be diagnosed with Lupus since October, but had it for years. The lumps come up on the side of my knuckles and are very similar to chilblains in looks and feel. I alao get tiny clear blisters that pop and then skin on the palm of my hand peels off. (Dr did tell me the name but I can't remember it) she gave me steroid cream which helped but you can only use it for 2 weeks then have to have a 6 week break. I was also given a soap substitute which has helped. Since I had a steroid injection last Wednesday (as had so much muscle pain) my hand is getting better!

Spicer21 profile image
Spicer21 in reply to Nikki246

Exactly like me, Nikki. As soon as the weather gets hotter they appear and I too have had them for many years (but I don't get blisters on my palms). I get an awful lot of muscle pain - was diagnosed with fibromyalgia back in the 1990s, but I have my suspicions that I have lupus, although recent blood tests were negative...could be sero-negative though. Am going to refer myself to a consultant. Thanks very much for replying.

Nikki246 profile image
Nikki246 in reply to Spicer21

I don't know where you live but I got my Dr to reffer me to Guy's Hospital. It's a bit of a trek (2hr train journey) but worth it as they have been far more helpful. I see Professor D' Cruz, he has done far more tests and been far more helpful than my Rheumatologist at my local hospital.

Spicer21 profile image
Spicer21 in reply to Nikki246

I've head such good reports about Prof D'Cruz. I'm going to ask for a referral to him, just as you suggest. If my GP won't refer me, I'll have to bite the bullet and fork out to see him at London Bridge Hospital privately. Thanks for you advice, Nikki. I greatly appreciate it.

Thedancer5253 profile image
Thedancer5253 in reply to Nikki246

That's really interesting as my rheumalogist has just referred me to doctor Cruz at Guys hospital. My appointment is in March now, it was meant to be Feb but it was rescheduled. Good to know you feel that you've had more help from him as I was skeptical about going. I was diagnosed with lupus in 2000.

Mimi1950 profile image
Mimi1950

I get the same thing. My doctor said it is normal for us. Must use sunscreen and cover up when in the sun. These things hurt indeed.

Spicer21 profile image
Spicer21 in reply to Mimi1950

Thanks Mimi. I always cover up in the sun, just as you have been advised to do. However, these lumps come up without me going outdoors or in the sun. I was recently bedridden - due to another medical condition - and so I'd not been outdoors at all during the hottest days of this year and the lumps still came up - due to the heat alone. It's all very odd.

Barnclown profile image
Barnclown in reply to Spicer21

Yes, my version of this flares simply due to warmer ambient temperatures...I don't even have to be in the sun.

Thanks for starting this very interesting discussion, fielder

🍀🍀🍀🍀 coco

Spicer21 profile image
Spicer21 in reply to Barnclown

Hi Barnclown :)

You're welcome - and thanks very much for replying. Can I ask - have you been diagnosed with lupus or are you like me still looking for one?

I also get facial cheek and nose flushing; do you get that at all? (I might ask on another thread about this too - as my flushing seems to come and go for no apparent reason and usually affects one cheek more than the other.)

Barnclown profile image
Barnclown in reply to Spicer21

Yes: am 63 with infant onset lupus + vascular ehlers danlos hypermobility + a primary immune deficiency & the usual collection of secondaries

Spicer21 profile image
Spicer21 in reply to Barnclown

Sorry you have so much to contend with...I have two other auto-immune diseases plus the 'dust bin' diagnosis of fibromyalgia. Do you get any facial flushing?

Barnclown profile image
Barnclown in reply to Barnclown

Thanks.. & good idea: will be another interesting thread 👍👍👍👍and yes I do get symmetrical facial & nose flushing covering the usual malar rash areas...and usually coinciding with flushed hands & feet

Spicer21 profile image
Spicer21 in reply to Barnclown

Thanks Barnclown - will post up about the flushing soon...I get it on one cheek more than the other.

Barnclown profile image
Barnclown in reply to Spicer21

Yes, these local variations happen, eg when my feet flush, the right is usuallymore flushed but not always 😉

Spicer21 profile image
Spicer21 in reply to Barnclown

I guess it's like with most medical conditions, most patients aren't text book typical (even though for a diagnosis our doctors would like us to be!) Have done a separate posting re the flushing; will be interesting to see what replies I get. Kind wishes :)

Barnclown profile image
Barnclown in reply to Spicer21

👍🍀

lotsoissues profile image
lotsoissues

I get those small itchy bumps too on my hands mostly sides of fingers and knuckles. But I've also been diagnosed with psoriasis of the palms so I'm wondering if everyone here has secondary psoriasis...I saw a renowned lupus researcher here in California and showed him those itchy bumps and he looked at me bewildered so I'm wondering why we have these bumps and doctors are clueless....story of my life though

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