Rash: Hi everyone, I hope you are all keeping safe... - LUPUS UK

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Rash

CecilyParsley
CecilyParsley

Hi everyone, I hope you are all keeping safe and well. I was just wondering if anyone has anything like this? It burns like mad and gets redder with heat. It never really goes but flares badly at times feeling like a burn. My GP says just dry skin but I use very thick emollient cream twice daily. Any advice would be gratefully received xxx

85 Replies

I think that if a GP told ME that that was dry skin - he'd get an earful! Is it maybe a lupus rash?

CecilyParsley
CecilyParsley in reply to PMRpro

This is how my issues started I had been feeling very fatigued and widespread Joint and nerve pain then woke one morning and my arms and legs were vivid red and burning. I thought it was an allergy so took Piriton but I was struggling to stand and by the second day had a raging fever and could not weight bare without screaming. I got a Lupus diagnosis fairly quickly as the butterfly rash over my face was very apparent and my bloods were all over the place with ANA and DSDNA all positive, white cells very low etc. Since my initial diagnosis the Rheumatologists are not interested in my skin. I have a large patch on my back too but that itches so much I can often be found like a sheep having a good scratch on the door frame lol. Now that I effectively have no diagnosis other than Fibro and hysteria or MCTD or UCTD I am not considered clinically vulnerable yet my mouth and genital ulcers persist, my pain and swelling and rashes come and go and my fatigue, headaches, Raynauds are still with me. Thank you for commenting. Sometimes I feel that I am going mad xxx

No my rheumatologist was not interested in skin either. Yet is is all so often connected. Can you get all this to a derematologist, big hug , lou xx

Sorry Lou I am sighing now because my priority is Respiratory to sort my breathing, followed by Neurology ( appointment tomorrow by telephone) then Rheumatology, then Urology after that I need to get my teeth sorted they are crumbling and my eyes are red raw despite moisturising drops and three courses of drops for conjunctivitis so I guess Dermatology after that IF my GP will refer. I am also waiting to start counselling. Thank you for your kindness xxx

Good plan and maybe they will see there is a link with the skin . Really tough, take care , Lou xx

You too lovely xxx

I started with Dermatology as I had thick squamous rashes on my arms and legs, I was lucky as the lady I saw sent me to a Lupus specialist as I was about to have Puva light treatment. If your breathing is so bad you need to have chest ex ray I had Organising Pneumonia in both lungs ( it looks identical to Covid in structure) I was put on 60 mg of Steroids then down to 40.GP on the whole know nothing about all the different side effects from Lupus. I went to Specsavers and the test showed very high pressure behind both eyes. I have been left with Glycoma but I was given Latanoprost drops, miracle, it hasn’t progressed

I am pleased that you were sent to a Lupus Specialist. I have never heard of Organising Pneumonia? I will have to look that up . I have been reducing from 80 mg prednisalone for months now. I am down to 5 mg at last but my sats have dropped to 89 again today so I have had to restart the nebulisers. Hopefully it will even out.I am so very sorry that you have been left with Glaucoma but glad that it has not progressed. Our bodies are so complex aren't they? Stay safe and take care xx

I am lucky I live in London where there is the Lupus centre at London Bridge Hospital,now Insurance companies won’t cover long term problems I see my lovely man at Guys. Never tell , if you do have private insurance that you have Lupus

I was on a life insurance policy that covered critical illness. Once I informed them that I had Lupus they paid a lump sum off my mortgage then ended the policy. It was a huge relief but I have been unable to get life insurance since xx

It can’t help all that Steroid and now a Nebuliser. I have been quite strict about food and drink. I found coming off anything from the cow and gluten really helped, you may have tried eliminating or keeping a food diary. I know when you feel so ill it’s the last you can be bothered with.Sleep and rest and by far the best drug of all is Amtryptaline, sorry think I spelt that wrong, but it helps with sleep, depression and has little side effect

Sadly Amytrptalline did nothing for me . I am a veggie and use KoKo milk and do not eat processed foods. This is my fourth course of steroids. My GP said because my asthma is brittle I have to stay on it until I see the Respiratory consultant. Xxx

PMRpro
PMRpro in reply to CecilyParsley

Anything here ring a bell?

mayoclinic.org/diseases-con....

If not - how does the rheumy account for your mouth and genital ulcers?

CecilyParsley
CecilyParsley in reply to PMRpro

Probably my hysteria? 🙄It is like my eyes..GP..we don’t deal with eyes, Rheumatologist..not my area. It is a never ending cycle of 💩I have no faith in any of them anymore. They simply don’t care. Believe me I have said to my husband if this is in my head, if I am making myself sick I need to be sent to a psychiatrist. I have said that to my GP and Rheumatologist previously and been told you have Lupus. Now I am in no man’s land xx

PMRpro
PMRpro in reply to CecilyParsley

What's up with your eyes?

CecilyParsley
CecilyParsley in reply to PMRpro

I look like one of those white rabbits. I was diagnosed with dry eyes shortly after my Lupus diagnosis in 2009 but I use Hypermol drops four times a day which helps. The year before last I developed the macular oedema from an overdose of Hydroxychloroquine. The Olthamologist said I have a small ulcer on each of my maculars now but they are not significant enough to treat so I was discharged. About three months ago my eyes became sore and crusty. My hubby went to the chemist and got me some drops for conjunctivitis. I am now on my third course ( different types) but it is not shifting. I have slight double vision in my right eye and blurry vision. It feels like there is a pressure behind them. I thought maybe my blood pressure was raised but it is actually low for me 105/52. I think maybe I should try a vet I might have more luck lol xx

PMRpro
PMRpro in reply to CecilyParsley

All of those can be caused by uveitis - but you would expect an eye specialist to recognise that. Another one?????

CecilyParsley
CecilyParsley in reply to PMRpro

Perhaps it is all part of my “ hysteria” ? Xx

louise-a
louise-a in reply to PMRpro

I went to my gp twice for my eye symptoms on the third visit (different gp) I was sent straight to the eye hospital. Diagnosed and began to treat my iritis but some damage remains to this day. Lou xx

I am so sorry Lou. My surgery’s view is that “ we don’t do eyes”. They have repeatedly refused me an appointment. Our Health Board ‘s Ophthalmology referral is now via Specsavers so you have to go there first. Invariably they then refer you to the macular clinic in their Newport branch who then send the images to the Ophthalmology department for them to see if you need to be seen xx

This is what is happening the system has several hoops before you can get where you need to go. Horrible. xx

Tykle
Tykle in reply to CecilyParsley

It's so annoying isn't it? My GP setup is the same. I had already been seeing an eye consultant but was discharged because the treatment was working well. A year later, I developed an allergy to the eyedrops I was on and went to my GP. Apparently, as I had been discharged, I had to see a high street ophthalmologist, who (surprise, surprise) said I needed to see a consultant. All of this took months when a GP phone call to the consultant would probably have sufficed. All this hoops must be such a drain on the NHS.

CecilyParsley
CecilyParsley in reply to Tykle

I could not agree more. I am dreading going to the Optician because I know full well I will be referred to the Macular Unit again but my eyes are so sore. I have my lap top two inches from my nose typing this. I hope that your eyes feel better now? Xx

Tykle
Tykle in reply to CecilyParsley

I had to laugh at the image of you close up to your laptop screen because that's what I'm like now! The eye clinics are doing phone appointments at the moment so I've been given a whole bag of different things to squeeze into my eyes. It's all fun isn't it?

About the photo: I get lots of skin rashes that look similar to that. It's how my lupus first started many many moons ago and it has been a recurring issue. I find they are worse with temperature changes and changes in circulation (like stopping after a long walk or putting feet up at night). I saw dermatologists at the time, who did lots of biopsies and tests but they put it down to lupus as there didn't seem to be anything else. I think it's just another way our dodgy immune systems react to anything they don't like, whether it's the sun, heat, a change in the weather, or maybe it's just them getting bored!

CecilyParsley
CecilyParsley in reply to Tykle

I am so pleased I made you chuckle..it is the best medicine 😂. My hubby is not laughing I just knocked my Kenwood liquidiser over . There is glass all over the kitchen floor. He shouted for goodness sake Blind Pugh, get out of the kitchen. I never had the rashes before I was diagnosed but now they are always there. As you say temperature and stress and fever make them so much worse. Xx

Tykle
Tykle in reply to CecilyParsley

It looks like lots of lovely people have some good advice and ideas so I really hope you find something that helps you. I don't think smashing the kitchen appliances is really the answer!!!

CecilyParsley
CecilyParsley in reply to Tykle

No I am gutted. Mind you if it had been my Vitamix I would be crying so silver lining. Maybe the new Rheumy can offer some advice when I get to see him xx

MtnClimber
MtnClimber in reply to PMRpro

All I can say is, WOW! So many people are suffering. My thoughts and prayers are with you all. I feel my issues are minor compared to so many of you. Much love and peace, friends.

🤗♥️🥰🙏🕊

EJ

My daughter has really cut down on rashes after my son in law eliminated everything containing formaldehyde from the house. My daughter wasn’t happy when he targeted her make up. He persuaded her to try Tropic (other makes available). She has seen a huge improvement in skin and itchiness. Her dermatologist at the hospital did some tests and confirmed the formaldehyde link. Best wishes Kevin

I use all natural things Kevin, from soap to deodorant, cleaning stuffs. I am nkt aware that there is formaldehyde in anything I use but I will check from now on thank you

KayHimm
KayHimm in reply to Kevin53

Interesting, Kevin. I think my weird nerve reaction has something to do with formaldehyde. I notice that is in a lot of imported products.

Glad your daughter has improved.

K

My skin perpetually looks like that but I also have horrible ichthyosis vulgaris on my legs. They look like dry salt flats. I also have chronic eczema which can itch and turn red as well. My lotions, soaps and laundry detergents must be scent free or I break out something horrible in patches like in your picture with little bumps. Luke warm instead of hot showers or baths also helps.

I hope you find relief soon CP. Take care. ❤️xx

Yes I am the same with scent free soap, lotions and I cannot bare hot water on any part of my body. Bless you that must be so irritating and uncomfortable. I do get the odd patch of wet eczema but nothing as bad as you. Thank you for responding . I hope you find a treatment that helps. For me only the lard type emollient cream helps the dryness but it irritates the raised slightly swollen areas xx

When I have eczema in my scalp, I use Aveno shampoo and conditioner and it calms it every time. I wonder if you could use the shampoo as a body wash or if Aveeno has a wash or oatmeal bath that would help.

Totally understand how frustrating these allergic/immune reactions can be. I can tell you the protocol in the US after being through bizarre after bath itching that coincided with other stuff. First they want you to eliminate all possible offending products. That is not easy. I even wondered if maybe the tub cleaner was the culprit. There are hypoallergenic soaps, shampoos, and creams. Once you have eliminated all of these, they will do allergy testing. After that, depending on other issues, they look other causes. Mine turned out to be nerve related.

A dermatologist probably can tell if it is autoimmune related. That would be another track to take. Can you get a telemedicine visit? Does the rash get worse when you have joint pain, fever, fatigue?

These rashes are rarely simple. Wish I could be more helpful.

It sounds very uncomfortable.

Xk

It gets more raised and bright scarlet when I am hot, or when I am having a flare. It burns as if I have been scalded and nothing eases it.Today is as it is at all other times. I was sat by the window tweezing my eyebrows looked down and thought I can see the rash even though it is not inflamed at the moment so will take a photo and see if the lovely people on the forum recognise what it is. I never have the water hot, never use any products that are perfumed or have anything unnatural in them. I use non bio washing liquid un scented and emollient creams twice daily except when the rash is inflamed when I cannot tolerate them xx

This might sound crazy but mention the burning to the neurologist. Damaged nerves can cause all sorts of weird things - itching, temperature sensitivity, pain.

Check in after your appointment. 🍀🍀

I have a whole list from balance to tremors to floaters, I almost feel sorry for them 😂😂

They’re used to long lists. No problem there. 😅

I hope not Kay. The Urology Nurse was severely irritated when I tried to answer her questions fully. She told me I have other people to speak to not just you and you keep talking??I said you asked me a question. She sighed and said yes but you do go on?? What can you say to that? When I got the record of our conversation she had put that I took Hydroxychloroquine for my asthma but was taken off it because it made my asthma worse?? Clearly she just was not listening. Let’s hope tomorrow’s appointment goes better xx

Bio D products are worth looking at, reasonable prices. Again other suppliers are available. Best wishes Kevin

Hi Cc, O' that looks so painful. I get prickly pin point rashes. Burn, and itch like crazy. Your photo looks almost like a derma burn. Our skin, we are in, reacts to things no one ever thought of. Even foods, or what is in them. Acidic foods, and what is added to the public water systems can trigger mine, or just cold air. I use Bio D, like Kevin suggested, and then wrap the area with spring bandages. Like gloves for you hands, but these are for the body. They use them on burn patients, burn bandages, look them up when you can. They really help. I wish I could give you more information my friend, So I pray your appointment goes well, please let us know. I'll keep praying, and sending you big soft Cwtches, blessings, and Love, Xxxx Thestormy sunshine :)

Thank you Storm. They certainly feel like burns when I am in a flare. How are you doing lovely? Xxx

Hi CecilyParsley yes I’ve has a hell of a week.

Oh bless you, it is miserable isn’t it? I hope you get some relief soon xx

I do hope we both get some relief soon xx

Thank you so much xx

I really feel for you. I write a list of things when I see a consultant. I copy one for the doctor too and go through it together. It works quite well. I have very dry eye problems which artificial tears made worse and caused conjunctivitis etc. for months. Turns out I had an intolerance to the eye drops and having tried virtually every eye drop known to man I found I could tolerate celluvisc. But as someone else said, burning pains are often a neurological problem and hopefully you can be helped. There are various drugs such as Amitriptyline that can help. But do make that list and hand to the doctor when you go in. Take care and keep us all posted

I make lists too Loopyru. This is a telephone appointment and the most stressful factor is that I was referred a year ago for a private consultation with a different Neurologist which was then cancelled. I do not know this Neurologist or why he is calling me. If he intends to carry out a private consultation over the phone I will not proceed. I have saved up the private consultation fee as my GP thought I should be seen immediately and there was an 18 month waiting list on the NHS. Perhaps he referred to the NHS also I do not know but this letter came out of the blue. Fingers crossed it goes well xx

So sorry to see you have this problem Cecily. I don’t know what it is but a retired ward sister recommended Aqueous Cream when I had a horrendous Lupus rash. It is only around £1 for a 500ml tub from any pharmacy but really moisturises and the best thing is you can use it as a shower gel/cream too. Hubby started using it in place of soap and found the cracks and hacks on his hands healed. Maybe worth a try Cecily? I hope you get some relief soon. 🤗😘

I use Epimax ointment twice daily Spotty. It does help unless in a flare where everything burns it xxx

CecilyParsley You are always ready to offer kind & supportive words for us all. I can give no knowledgeable advice but I just wanted to say I for one care & hope that angry rash calms & eases soon.

Good luck for your appointment today..you seem in a determined mode🤞& you know none of this is in your head. Stay strong, calm & positive & don't let them beat you down😘

Bless you Daisydayz that is such a kind thing to say. Thank you so very much xxx

Aww CP, that looks very itchy and painful. I have no answers - sorry - but sending gentle hugs

🤗🤗🤗

CecilyParsley
CecilyParsley in reply to MEGS53

Thank you Meg, hugs always appreciated. It doesn’t itch it burns like mad xxx

MEGS53
MEGS53 in reply to CecilyParsley

You really are having a bad time of it, CP.And your doctors

Grrrrrrrrrr!!

👿👿👿👿

CecilyParsley
CecilyParsley in reply to MEGS53

I am trying to avoid them on the whole Meg. It is very sad that ZI have such little faith in them. The Rheumatologist was great though so I hope when I finally get to see him things will change. Fingers crossed. I hope that you are keeping safe and as well as you can be lovely xxx

MEGS53
MEGS53 in reply to CecilyParsley

🤞🤞🤞

Take care, xxx

I believe it's colloidal oatmeal.Sorry to butt in!

Dear CecilyParsley

Your leg looks like your loosing pigment , my arms have patches of this , but not as much has can be seen on your leg . I do get burning pain in my skin on my arms , I’m also seeing a neurologist next Thursday , but it’s regarding weakness and having no reflexes , with joint pains , I was diagnosed with nerve sheath demyelination in my elbow area about 2/3 years ago .

I do think it’s all nerve related ?

Have you got weak ankles/knees ?

Phone appointment at least will hopefully get some kind of answers .

I agree with the list making , but I sometimes get over whelmed with the amount I need answers and help with , always feel effected by my appointments in one way or another .

🦋❤️

Really is that what you see Willow? I thought my legs were over pigmented so much brown and red. I seem to have weakness all over, muscles, nerves, tendons, joints. My knees are completely wrecked. I was on the list for double total knee replacements but decided I just could not cope with the stress of constantly being turned down for surgery because of other health issues .I honestly do not know what this is with my legs. I do have patches on my lower arms too but they are not as painful. Good luck with your Neurology appointment I hope it goes well for you xxx

Dear CecilyParsley

Yes I did see/notice the red/brown areas , yet I more noticed the whiter areas , I have a vasculitis problem . I’m wondering if it’s some kind of blood cell problem or lack of red cells under skin , making skin look very patchy , and in turn causing nerve /pain sensation .

Thank you for wishing me luck with my appointment , seeing a neurologist , last one now retired . It will be part of my Rheumatology much needed face to face .

🦋❤️

My husbands legs look like that and doesn’t have any immune problems, he was a heavy smoker and landed with thrombosis in both legs so is on permanent blood thinner. However they also look like my sisters who has RA and has never smoked in her life but landed up with thrombosis, mainly because she is wheel chair bound and also takes a blood thinner. There is a very simple test called a Doppler which checks the flow of blood to your feet. Just an idea as some of these problems may be circulation to your feet

I have had several Doppler, all clear even with the rash at its worst. I have never smoked in my life either. I do feel like my circulation is very poor. I have significant oedema most days in my legs, so bad sometimes that I cannot flex my ankles

I get exactly the same thing on my leg I feel your pain I'm also under derogatory as well as rheumatology my doctor referred me as he said it was my lupus keep telling them

CecilyParsley
CecilyParsley in reply to Pmeh

Thank you I will try and summon the courage to ask yet again xx

Pmeh
Pmeh in reply to CecilyParsley

I know exactly how that feels and now I'm in a awful position keep pressing

Have you been checked for Bechet's? And if so, checked by a proper vasculitis specialist as opposed to a rheumatologist?

I agree with PRMpro that your symptoms, particularly the genital ulcers, strongly indicate this is what you may have. I was checked and excluded from this diagnosis last year largely because I don't get the genital ulcers.

I was checked by Professor Fortune at the Royal London, Whitechapel hospital over a telephone appointment. I was referred to her by a neurologist. It may be possible for you to have a telephone consultation and provide a medical history and medical notes in advance?

There's probably someone closer to you and I believe there's a centre of excellence/ specialist in vasculitis in Aberdeen.

John Mills is an absolutely lovely man who heads up the vasculitis.org.uk charity. Please check out their information pages online and consider calling him for a chat. You are not in need of a psychiatrist, but I fear some of the medics who have been dismissing your very obvious and serious physical symptoms may be!

Good luck and I hope you get relief and proper help soon. 🍀

No it was a Rheumatologist that first diagnosed me based on my genital sores, joint swelling etc. There seems to be no joined up working. When I had my three gastroscopies each time they noted bleeding sores in my gullet. They took biopsies each time saying they were infected thrush but each time the biopsies came back clear. When I get the genital ulceration I get a croaky voice and struggle with swallowing. My gut problems worsen and I feel that these painful ulcers are right through my body. My Rheumatologist of five years used to shrug and say probably when I asked that question. He said that I have probably had Bechets for 30 years but that my other symptoms were Lupus and Fibro related? Then the next one I saw said it wasn’t Lupus or Bechets based on one blood test? Thank you so much for the info. Aberdeen is too far for me, I am in South Wales but I will definitely have a look on the vasculitis site xxx

I am so sorry you are having such a horrible time. There are other centres of excellence, Cambridge is particularly good - maybe you could try and get a referral to Addenbrookes where David Jayne and his team are?

Crossing my fingers for you- don't give up as there's a good doctor for you somewhere x🤞💐💐

I actually went to St Thomas’s in 2011 after my then Rheumatologist diagnosed Bechets and took me off Hydroxychloroquine. After a CT scan I was told I had low grade lymphoma. I disputed this and asked for a second opinion. The Rheumatologist at the Lupus Unit said initially I definitely had SLE unless someone else had taken my blood tests but after my irate Rheumatologist contacted him he downgraded it to UCTD and discharged me. The new Rheumatologist sounds very interested and I have to hope that he wants to help me xxx

I am so sorry- you have really been through the mill. I hope this current rheumatologist gets things moving in the right direction for you 🍀💐

Thank you. Fingers crossed 🤞🏻 Xxx

Cecily I am so sorry to hear your tales of woe. I have rashes just like that and they are so distressing and itchy and painful. It was because I had them all over me that I got the diagnosis. My GP tried everything and the only thing that I believe worked was amitriptyline which I took regularly for ages. But, when I saw the dermatologist, who diagnosed the lupus, he told me to stop taking it as it could cause dementia! I have to say since taking the Hydroxychloroquine it has been better but it still happens. I don't know what to say other than to sympathise. Because I went down the dermatology route I can't get anyone to take other symptoms seriously and it is so upsetting. The latest thing is my hair is coming out in small clumps! I do find keeping my skin moist helps. Also I try and keep cool. I don't wear wool anywhere near my skin. And of course no sunlight without loads of protection. I used to put ice on it but was told it was an absolute no no as it could damage my skin permanently but I have a small handheld fan from John Lewis and just blowing cool air does seem to help a bit.

I also have dry eyes but tear-lac does really help. I have had other drops but found I was allergic to the preservative and it made my skin red, dry and scaly. Worth checking if your drops have preservative in them I am told they are much cheaper than the preservative free.

It does help knowing I am not alone so thank you for sharing. If you are mad so am I!!!

I am so sorry that you too have had these issues. I haven’t tried tear lac for my eyes. An Olthamologist put me on Hydromol and they have been fabulous up until the past month.It must be so upsetting to lose your hair. That was one of the symptoms on the Lupus checklist I didn’t have . Covid has me looking like a cross between Hagred and Worzel Gummage lol Thank you for your kindness, it means a lot xxx

I get this type of rash on my knees and elbows and the GP would say it was Ultrcaria. After biopsy it turns out it was a lupus rash. I never get it on my face and back, but it’s starts with incredibly itchy spots that multiple looking similar to yours and then they seems to join together getting hotter and sore. It flares in the sunshine and leaves my joints feeling stiff and heat doesn’t go. But it was only because of my diagnosis that my dermatologist tested the rash.

CecilyParsley
CecilyParsley in reply to CJT37

Mine never itches on my legs and arms but the patch on my back drives me mad. I can no longer go out when the sun is shining without thick black leggings or my legs blister yet my arms don’t blister. It is very weird. Take care and keep safe xx

Hello there. So sorry not replied before now (working this week). I get something very similar on my right cheek (face😉). I’ve tried all sorts of creams but without much success. Have sent away for Cerave from Boots so waiting on this arriving. Will let you know how I get on with it. I hope you’re doing ok. Sending 🤗s. XX

I love Cerave I was using a pot a week until my Pharmacist at my GP surgery put me of Epimax ointment. I won’t lie it is like lard but it eases the burning. Good luck with the Cerave it is very creamy and leaves your skin smooth and soft. Big Cwtches back to you lovely xxx

🥰💐🤗🥰

😢🥰

Hi Cecily, I'm sorry you're having such a horrible time. I've just had a quick look in The Lupus Encyclopedia and there is a condition called Acute Cutaneous Lupus Erythmatosus, which can occur in several forms, one being described as 'generalized acute cutaneous lupus rash', causing reddish blotches and a warm sensation. It says it's not a photosensitive rash, but occurs in areas covered by clothing and is related to flare activity. Don't know if this helps, but I hope you get some anwers soon. Sending virtual hugs

🙂

Thank you so much I will definitely have a look at that. Stay safe and as well as you can. Love the name too xxx

Yes, it does have colloidal oatmeal, and it also has sweet almond oil & avocado oil in both the shampoo and conditioner.

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