Hive like rash (hot, raised and itchy) even when ... - LUPUS UK


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Hive like rash (hot, raised and itchy) even when taking antihistamines!

ClodaghK profile image

Hi everyone,

Just wondering if anyone gets similar rashes to this? I only ever get it on my legs and arms.

My doctors seem to have no idea what it is or what may be triggering it.

Just curious to know if anyone else suffers with this!

22 Replies

Were you in the sun prior to that rash?

ClodaghK profile image
ClodaghK in reply to KayHimm

Unfortunately not - was just getting ready for bed when it decided to show up! With bright lights or sun, I get the rash on my face and on hands but that’s completely different to this one!

Has the doctor referred you to a dermatologist? If the hives type rashes last longer than 24 hours it's definitely not hives but whatever it needs to be seen by a dermatologist.♥️

ClodaghK profile image
ClodaghK in reply to Boudica1

Nope there has never been a mention of a dermatologist, so maybe I’ll have to make that suggestion to my GP! Even when I don’t have the rash, there is so much heat coming from my legs (mainly from the knee down) - really irritating! Thank you x

Boudica1 profile image
Boudica1 in reply to ClodaghK

keep photo records to show your doctor and if you do get refered to a dermatologist you can show them as well. Photo's are far better than trying to explain and if there are any other symptoms like the ones you have already mentioned keep a simple diary of those as well. Good luck and hope you find out the answers soon.X

Poor you, it must feel so worrying for you... is it itchy? I got a rash that looked exactly the same (years before my SLE diagnosis), it came out of no where and I was covered in it from tip to toe... the GP was dismissive and would only prescribe antihistamines which didn’t do a thing. I ended up going to A&E, they prescribed steroids which cleared it in about 24 hours. I still don’t know what caused it but I suspect a new scented candle might have been the culprit!! All the best and hope it gets sorted for you.

Yes it’s the exact same for me, I have no idea what triggers it which is the strange thing! Totally agree, antihistamines are absolutely no help.. I am so glad that you got sorted! Thank you so much, will keep this updated if I get any answers x

Yeah that looks like rash from sun but since it is not it could be autoimmune , meaning , It is inflammatory so antihistamines are not going to help.

Hi, my daughter gets rashes just like that, it isn't anything to do with a reaction to the sun.Usually hers appears on her neck, chest and arms. Hers is allergic reaction. It can be triggered by foods, medications and creams/lotions.

Just another thing you could ask your doctor about maybe, although while trying to guess what is wrong with her, she gets no help.

Yes definitely, I can find out in regards to allergies! But at the moment I couldn’t pinpoint anything different I’ve used, no new medications etc but will definitely be more careful! Thank you x

Hi ClodaghK 🤗Yes I get rashes similar to yours in the pic. I have a primary diagnosis of subacute cutaneous lupus (SCLE) so it's my skin that is affected the most.

One of the first things doctors will ask is have u changed your washing powder? Or r u using a different soap? That kind of thing. So is that the case with you?

Keeping a symptom diary will help..u can note what you've eaten..what the weather's u feel generally..n also what meds u take to try n relieve it (even if they don't work). This all helps u and your doctor to get more of an idea of what triggers it.

One other thing before I go...does this rash happen after a bath or shower? The reason I ask is that I get very similar when I've had a shower..I seem to have developed some weird allergy to water!! Mad..but true!! 🤷😹

I'm on treatment..all the usual meds..for my skin I use Dermol lotion which is soothing n can also be used as a soap cools the area n soothes the itch n can be applied often. I get it in prescription but it can be bought online or in chemist. 🌈😽😽Xx

ClodaghK profile image
ClodaghK in reply to Krazykat26

So glad to hear someone else has experienced this! I get a totally different rash if I’m out in the sun, it’s usual the top of the palm of my hands will break out in tiny little itchy spots (so strange that it only affects there!)

Yep, absolutely nothing has changed (I tried thinking of stuff myself but nope). What I do notice is this week I’ve been feeling quite unwell & it just felt like it was a reaction to how my body was feeling inside which is unusual too!

I haven’t noticed the bath/shower - our bodies are just crazy aren’t they! 🤣

Amazing, thank you so much! Seeing my doctor on Monday so will see what he has to say! X

Krazykat26 profile image
Krazykat26 in reply to ClodaghK

I get the rash on the palms of my hands too..I have to be very careful in the sun n also lighting indoors!! Fluorescent lighting in particular. I have to protect myself with sunscreen, hat, shades, cover up everything, I also use UV protective lip balm!! Note your've got a good pic there n before your appointment write down questions that u want to ask..leaving a bit underneath so u can write in the answers to your questions!! Write everything even if u think it's irrelevant coz this lupus is a tricky beast for sure.

The skin is often a clear indicator when I'm experiencing a flare along with fatigue n joint n muscle pains etc..they r definitely connected. This will help u to build a picture for yourself as well as the doc 🌈😽😽xx

ClodaghK profile image
ClodaghK in reply to Krazykat26

Oh my god me too! I thought I was crazy, getting rashes from being in front of my laptop or my bedside lighting!!! I have never heard anyone else have this issue! I definitely will do, I’m learning some new things every day which is great as I am becoming more knowledgable!

Amazing, thank you so much for taking the time to reply to me! X x

Krazykat26 profile image
Krazykat26 in reply to ClodaghK

You're most welcome 🤗 knowledge is power!! 🌈😽😽Xx

MCAS... possibly. My rheumatologist and neurologist are very “clued up” with this diagnosis in lupus patients. Also seen in APS and Sjögren’s patients.

My neurology team has a protocol called a MCAS “protocol” they put their MCAS patient on that receive IVIG. ( that’s now me.)

I should have been on it prior to rituximab as well. I was on about 1/2 of it. It does help somewhat.

It calms down mast cells and helps prevent them from degranulating.

This is only one possibility- something to ask your rheumatologist about perhaps.

You do have a MCAS specialist in the UK- Dr Tina Peers.

Okay that’s really interesting! Thank you for that information.

Definitely, I am currently on a waiting list for a Rheumatologist (2-3 years here in Ireland) but hoping I can get my GP to speed things up during my next appointment!

Salzer profile image
Salzer in reply to ClodaghK

Hi Clodagh. Just wondering where you are in Ireland? 2 to 3 years is a crazy wait! I only waited 5 months from GP's referral to appointment in public rheumatology clinic in Dublin. It may be your referral letter didn't have enough information. Definitely worth asking GP to do another one. Or you can see someone privately quicker though I know it's expensive! You shouldn't have to wait that long. S

ClodaghK profile image
ClodaghK in reply to Salzer

I’m in Cork! Wow really? When my GP was sending away the letter, she said I would be waiting a long time to be seen and approx 2-3 years. I’ve got a letter to say that I am on a waiting list and that was about 4 months ago now! I’m seeing my GP on Monday so will definitely find out as my health has just been on a downward spiral the past 6 weeks or so. Thank you so much for the advice, really appreciate it! X

Salzer profile image
Salzer in reply to ClodaghK

Definitely worth chasing it up especially if things have gotten worse. Have you called the hospital clinic to ask if they know how long the waiting list is? Would be useful to find out. Sometimes you can fall through the cracks while you wait patiently! Though covid has definitely slowed things down too :-( But there should be no need to have to wait 2 or 3 years! Good luck with the GP appointment and hope you get some good news soon.

Hi I have just had a rash just like the one you have the Doctor said it pityriasis rosea check that out on Google to see what you think I'm on cream and antihistamines which so far aren't helping the itch is the worst think about this they tell me it goes away its self I hope this helps check it out.

When my symptoms of Lupus were really strong like the butterfly rash etc and I was just starting real treatment, I would get hives. It was one more skin manifestation of Lupus. Everyone can get hives for many reasons but for me it was directly related. I do not get them now but I’ve also been treated for 10 years.

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