I’ve added another post on my current dilemma.. I’m currently treated for connective tissue disease they’re not sure if it’s lupus or rheumatoid. I just wanted advice about this weird rash?
I’ve been off my meds since October and struggling to get back on them. I’ve had recurrent chest and sinus infections and in the last week had an infection in my boob!!! And my ear lobes (been pierced 30 years why!) anyway 7 courses of antibiotics and no closer to getting back on my meds.
I’ve had all of my issues come back tenfold and this lovely new rash I’ve not had before. I have patches on my arms and legs (not usually affected). They have a ring around them. Google told me it was ringworm! But I did find some similar looking rashes on people with lupus. Has anyone had anything similar? I’ve found the days when this flares, I feel like I’ve been hit by a bus. Very sick and tired. I want to be selective with my rheumatologist on the 5th - we have so much to cover. So if this is not significant I’d rather use the time talking about something that will get me better. Thanks, Toni
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Tonkie
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Morning TonkieSorry to hear that you are having so many issues.
I have a similar rash on both of my breasts. The doctor has told me its a fungal infection. I'm on my third different steroid cream. So far nothing working.
When I was diagnosed with Lupus in 2020 I had 3 piercings in each ear. I'm now unable to wear any earrings gold or silver as my ear lobes become very sore and swollen.
I came off of my hydroxychloroquine approximately 15 weeks ago under the advice of the lupus nurse due to my body rejecting it. Currently being monitored by the hospital every 4 weeks.
Aww I’m sorry to hear you’re struggling also. The ear lobe thing is weird? I’ve had to take my earrings out too. I have many piercings in my ears so I’m hoping I can keep some.
I have lots of steroid creams for other issues maybe I should try it on these patches? I do have one with an antibiotic in it. I just look diseased now with the eczema and psoriasis and this weird new rash.
The latest cream I've been given is trimovate.I'm also taking benadryl liquid as I'm dairy and gluten intolerant and it's the only one that doesn't contain these.
MorningI was taken off of hydroxychloroquine because the rheumatologist increased it from 200mg a day to 400mg a day and I was in incredible pain in the calves of my legs, when I rang the help lupus helpline at hospital the doctor rang me back and told me to stop taking the 400mg as sometimes it can cause a reaction in your legs. She told me to continue with the 200mg but things didn't get better so was advised to come off of hydroxychloroquine completely.
That was approximately 16 weeks ago.
Since coming off I've been much better.
I keep in touch with the lupus nurse every 4 weeks to let them know how I'm doing.
So far I'm managing . I've had a couple of
flares but have managed them.
I'm also seeing a chiropractor for acupuncture and treatment on my joints.
Good they watching things. Maybe 400mg was too much, and it would take a while for side effects to go....even if reduced to 200mg.
But once they went then maybe they would try again on just 200 mg..
I had bad reaction when first started hydroxychloroquine. Under the supervision of my rheumy I came off hydroxychloroquine and then 're-challenged' and it was okay.
I'm in my 60s and started on 200mg only. Now on 300mg. Not sure I could take 400mg.
I get muscle pains at night after swimming (which do regularly to reduce inflammation) so know the exercise also impacts if overdo things - it is a fine balance. Sometimes multiple things impact together too, I find that a bit with my heart after certain vaccinations so may lower hydroxychloroquine for a day or two to be on safe side.
Here is a post on why hydroxychloroquine is so important which made me understand why if at all possible, we should all be on the drug.
Seems like they are watching you carefully which is good. Thanks for explaining. Hope things go well.
Hi. I have lupus and ra... Used to suffer quite a lot with those rashes and occasionally do now. I take fenofexadine when it happens now but when it's been very bad I've been given steroids. Definitely worth mentioning although I found some consultants were very interested in them and some weren't. Go figure!
Hi! Yeah this is a new one for me I suffer badly with hands/neck/ears and scalp with eczema and psoriasis. Since coming off the meds my feet are now affected. Then this new weird blotchy rash on my arms and legs. It looks different to my other rashes.
I am on quadruple the dose of fexofenadine, double dose of cetirizine and Loratadine. I get angioedema on my face so immunology advised to load up on the antihistamines. But not sure if they have same affect cause I’m taking them daily? I have some scope to increase cetirizine and loratadine.. I’m also supposed to be on steroids for the next few months (low dose) but I’ve been taking sporadically as I hate how I feel on them. I’ve noticed if I stop them everything is worse.
I’ll mention it to my rheumatologist and see if she’s interested. All of the skin has peeled off my right hand and looks very sore, it’s blistered all over hands and feet. I hope she’s interested in those places cause it’s so painful 😔 I’ve read other people have had biopsies done on their rashes but I have never been offered this on the NHS? Have you come across it?
Gosh I am so sorry you are going through all of this. It sounds so intense! I was offered a biopsy at one point but only by chnace and getting it done was complicated as my rashes were very sporadic. I was told though that they could have potentially detected lupus by biopsy so worth finding out.
Hi Tonkie. I’ve had many rashes biopsies because they can confirm lupus. Mine did. It’s not something to ignore. You must show them to your rheumatologist. Best, MM
Best thing to do is see your GP asap. I would think any person who is being followed for possible lupus or any other connective tissue disease should be seen for all new skin rashes.
If it is a fungus, they can treat that too.
Don’t be shy. There is no need to be “selective.” My connective tissue disease was diagnosed the day I had a rash after sun exposure.
I always feel so hurried in the appointments and because I have so much to go through I didn’t want to waste time on something or nothing. But I certainly don’t want to leave a fungal infection untreated so I’ll get it checked out at GP if they can see me 🤞🏻
But Tonkin your GP can let the rheumatologist know if it looks like a lupus rash. They can send you to a dermatologist who is the best person to diagnose. Or, as I said, if they feel confident it is something more common like fungus, they will treat it.
If there is any question it is autoimmune related I would be surprised your GP doesn’t react. They must know you are being followed for autoimmune disease.
Good luck and let us know what your GP says. Remember photos are never as good as in person. My dermatologist won’t even comment on a photo.
Hi Tonkie and Kay, When I had a very graphic rash a few years ago, biggest ever for me, I went to GP and they spent 2 months faffing about with ointments that didn't work, meanwhile rash getting worse. Eventually referred to dermatologist who prescribed oral Prednisolone that did slowly calm it down and eventually it went away (about 6/7 months from start to finish).
I still take the steroid tablets as it occasionally rears its head again and I increase dosage to calm things again. It may be you need this type of more forceful medication for your skin problems which will of course then reduce the inflammation all over the rest of your body as well.
I see dermatologist regularly now to hopefully forestall any more big skin flares.
Hi, It’s hard to tell with the picture, it does look a bit like the rash I had, two doctors I saw thought mine was lupus, I was sent for a urgent appointment with a dermotologist and she was sure it was lupus, I had a biopsy and it was. I was diagnosed with MCTD till this biopsy. The rash I had was all over my back, legs, arms, bits on my face and scalp. You could actually peel the skin off mine. After a shower it all look very red. I was asked if the photographer could take pictures of every bit of the rash, that’s how sure she was even before the biopsy results. I was on steriods at the time because I had tenosynovitis in my hand. Both these things flared at the same time. I was given elecon and dermovate for the rash. I am also on 400mg of hydroxy . I would push to see a dermatologist .
Unfortunately dermatology had no interest in seeing me 😞 even with the skin peeling off my face and hands.. they just said take quadruple the antihistamines. I’ll try again with the new rheumatologist and I’ll show her this other rash in case it is fungal. It is spreading and I don’t usually have anything on my arms and legs so this is weird for me. Thanks for sharing your experience. This is what I’ve woken up to with my hands 😭 I wanted to address all the blisters and my other skin problems at the appointment, they’re usually pressed for time.. but I’ll show her these patches too cause I don’t want an untreated fungal infection.. or if it gets me to a dermatologist that would be great ☺️
I had a friend who had a rash similar to the one on your hands, it turned out she was allergic to paper of all things. She was a teacher as well, she had to wear gloves a lot of the time. I think I was very lucky seeing a decent dermatologist or I would still be struggling along. The pain in my hand was the worse I’ve ever experienced, then the horrible rash appeared. I did wonder if the two were linked. My blood were always negative for lupus. Only ever showed a very high RF.
Paper! Gosh that must be difficult. I think mine is water? But I’m looked at like a weirdo when I’ve said it 🙈 I’m glad you got answers and found some help. Nothing really shows up in my blood either - not anything significant anyway.
hi my husband diagnosed with connective tissues disease in aug 24, had these patches in his groin, prescribed anti fungal cream and they cleared up but left purple scarring to legs
Hi. I have been trying to get my daughter diagnosed with UCTD since the age of 6. She is 21 now, Who diagnosed your husband? 15 years later and I haven't given up.
hi his symptoms started very quickly and dramatically in aug 24. GP referred him to local hospiyptal. Over 4 months he saw gastro/physician/rheum/cardio-still under all these consultants as this disease has damaged every organ in his body. Diagnosed by consultant Rheumatologist in Dec 24 then started treatment. I must admit our local hospital has been fantastic+keep trying or ask your GP for a referral to your nearest specialist centre
Hi. Thank you for the text. Who was the consultant rheumatologist? Please could I have his name? He may see patients privately from anywhere. My daughter has a damaged larynx and stomach and we are still struggling to get a diagnosis.
I just wanted to ask.. you say damaged stomach? My daughter suffers with a rare autoimmune condition - eosinophilic gastroenteritis. Have you exhausted other areas like ENT/Gastro? My daughter started with that, then developed vitiligo and she is now displaying similar joint problems to me so she may have another autoimmune disorder too.
Hi. She has had so many varied symptoms over the years which don't fit into 1 specific diagnosis - mouth ulcers like bechets, rashes, arthritis, spots in vision, inflammation in larynx (that lasted a year) and damaged her larynx, inflammation in the tummy (that lasted a year) and left her with GERD and being lactose intolerant, chronic thyroid inflammation, raynauds, hypermobility, low c4count like lupus, high serum ace like sarcoidosis, other off the scale bloods like ESR and lactate dehydrogenase. I won't stop until we get a diagnosis. 15 years and counting. I have 2 autom immune inflammatory diseases myself. What is the name of your consultant that diagnosed uctd please?
Jeez I can’t believe they haven’t diagnosed her with all of that going on! I’m sorry she’s had to go through all of that, but it sounds like she has a wonderful advocate in you. The one who diagnosed me tried to take it away again shortly after. She had misdiagnosed me multiple times also. Dr Watson is a lot more understanding. She is a lovely lady and has been really supportive. My daughter has GERD too. Have they biopsied her stomach? Esophagus? Colon? I’m only interested because my daughter is struggling with a few of the same things. She’s also needed steroid treatment to get her autoimmune condition into remission. She now has kidney involvement and I’m seeing a lot of similar symptoms to me with arthritis/lupus. I really hope you manage to get answers and a diagnosis for her. I wish I had a mum like you growing up. I was left to it… 36 years without medications has taken a toll on my body.. and took a lot of my life away being poorly/infected/swollen. Keep fighting x
My daughter is also lactose intolerant. We have had to take dairy away completely for the last 10 years. She’s 16 now and she’s getting kicked from all of her paediatric doctors and being sent to adult. I’m really worried they won’t take her seriously 😞 x
Hi. They did an endoscopy and diagnosed chronic inflammation. No biopsy. That was in 2019 and she has had GERD and been lactose intolerant ever since. Great Ormond street diagnosed twice and took it away twice. Alderhey diagnosed and took it away. Johns Hopkins in America won't give it a go. I just got the response. Its because it doesn't fit into lupus or just behcets or just etc....but why won't they diagnose uctd / mctd? I don't understand. You said that Dr Watson looks at symptoms not bloods. Did she confirm your diagnosis of ctd?
Yeah. With only a slightly raised ANA. She went off my symptoms and the fact methotrexate hydroxychloroquine has helped. Ideally she needs a biopsy on the chronic inflammation in her esophagus. It could be eosinophilic gastroenteritis (one of the problems). It’s often misdiagnosed as GERD. My daughter was until they biopsied. Not many gastros are knowledgeable about the condition so it gets missed. Very rare autoimmune disease, but sounds exactly like my daughter.
Hi. My daughter won't go through more tests. She suffered with mental health conditions after all of this. I don't know. I am emailing Dr's in Manchester this evening. Good luck for your appointment. Hugs
Hello Tonkie I have something similar-rash (individual spots)over my abdomen back arms and legs.Mine started with three small b urst blood vessels in my hand which I don't know why unless I knocked my hand to start blood spurting out.My GP did not suggest what it was .I did read that kidney problems can cause the spots on the abdomen.I do not think mine had rings around them.
I’m getting lots of purple scarring at the moment due to a fall I had in the snow - the wounds wouldn’t heal. I don’t want anymore so I’ll see if I can see the GP to check if it’s fungal thanks for the heads up about it as I’m getting quite low about the way my skin looks and don’t want to add more on my arms and legs.
Pre-diagnosis, I had a similar looking rash, with a fringe on it, on the back of my neck that would not respond to antifungal cream which GP gave.
Never had it return since treated on hydroxychloroquine. I'm not sure it was a fungal rash. Now I would push for dermatology referral if I got rashes, unless diagnosed by a specialist we are not getting the help we need if GP does not feel able to decide on what causes something.
I had breast issues and went on 2WW breast referral - but fortunately fine , but again I think there was a connective tissue disorder cause. Anywhere there is connective tissue (everything and everywhere) we can get affected by the condition.
This is so odd too… I had a scan in November and they found cysts. They’ve got more painful over the last few months and then they started leaking blood and puss (sorry tmi). It started off another cancer scare. Thankfully antibiotics have helped and they said it was an abscess. I’m falling apart 😭
Thankyou for sharing your experience though. It really helps not to feel alone. I feel so ugly and disgusting at the moment 🙁
That would make sense, I get the mouth ulcers too when I’m run down they’ve flared up as well. I’ve contacted the GP and will see if they’ll give me some fungal cream to try.
I was diagnosed with SLE in 2015 and had very large circular rashes that called ‘my crop circles’. I, too, thought I had ring worm! My GP was very good and sent restraint to dermatology who did a biopsy. There was no cause for the rashes that they could identify. Rheumatology said it was an autoimmune response and gave me hydroxychloroquine and Mycophenolate straightaway. I still can’t wear earrings but the rashes have not come back.
That is what they are like! One leg had about 6-7 different patches and then one of my arms had 3-4. I woke up one morning feeling so so tired. It was my son’s party and I felt like I couldn’t take another step. I got in the bath and that’s when I noticed them. I’ve never had skin issues in those places so it was odd. Over the last couple of weeks they’ve come and go, sometimes really angry.. then they calm down again. I really hope this gets me a dermatologist 😭 I’ve been trying for so many years. Rheumatology referred me sending them pics of my hands and face and they’re in demand so much they just said we can’t see her 😞 it’s odd how a few people have said about the earrings too? I’ll keep mine out as they got so sore and infected i struggled to sleep for a few nights til they calmed down x
I used to be able not to wear ear rings for weeks. Now I can leave just a couple of days and piercings have started to disappear.This never used to happen pre connective tissue disorder.
This looks very similar to a rash I had last year my GP thought it might be ringworm too! It spread everywhere and as it was summer I really had to cover up as it looked so awful. I had a skin biopsy and was told lupus (I have Sjorgrens) rheumatologist advised to just keep it moisturised and It went after about 4 months.
Thanks for the reply. The issue I have is whenever I get a skin complaint it typically resolves by the time I get to see the rheumatologist 😭 I’m not sure whether I should avoid taking the steroids just as I have around a week to wait to see her.. it would be ideal if she could see some of these issues as she never does. I’m hoping they can maybe test some of these rashes and give me a diagnosis once and for all.. I do have a diagnosis (UCTD) but i feel like I’d be taken more seriously with a definitive one.
Are you taking photos of your skin? If this is what I had then it will definitely be with you in a weeks time! Good luck with rheumatologist mine just keeps saying ‘yes very common’ to anything I flag up, very frustrating and not in the least helpful!
Oh gosh I know the feeling. It’s very disheartening. Yes the patches are still there, it’s been 2 weeks now. Sometimes they look really angry but then they get fainter for a couple of days. Usually when I take steroids all my other rashes clear up so I think I may try to wait this one out. Yeah I’ve got a few of my hands legs and feet from over the last couple of weeks. Also my swollen fingers. So are a lot of people diagnosed with a skin biopsy? As my bloods are only faint positives.
UCTD is far more common than lupus. Most of us feel we would be taken more seriously if we had a clearer diagnosis. That is only a feeling. Of course people with kidney disease and myocarditis will be on more medication and see specialists more often. But try not to minimize your symptoms.
Try to quantify your pain and fatigue to move past just focusing on blood results.
There are a lot of people here on DMRDs and biologics who have UCTD as a diagnosis.
When I was first diagnosed with UCTD and given medications, I was thrilled to finally have it recognised. However shortly after 6 rheumatologists (yes 6!) took me in a room and told me definitively I do not have an autoimmune disease. Thankfully, after many misdiagnoses by them I had already seen the GP for a second opinion so I didn’t have a long wait to see my current one after they did that. I spent all of last year questioning whether I should be on that medication.. and I think that’s why in October I stayed off it.. because the joints didn’t swell straight away or my skin didn’t flare straight away I had a bit of a false sense of security and I thought maybe they were right?
Now, I can definitively say I was on the medications I needed. Everything was well controlled on them and I’m kicking myself for stopping them. It’s just unfortunate the side effects stopped me taking it originally.
I think ill always feel uneasy in this category and I do feel like having something show up on a test or a biopsy - something in black and white - a yes - no maybes - would be comforting and very cathartic. I still feel traumatised now thinking about it.
How awful. You have a right to be angry and disappointed in the medical system. I don’t know why rheumatologists are definite like that after a patient has been diagnosed. So much better to just say bloods are better and we have to see how you do.
Have you ever thought of calling the doctors who declared you with no diagnosis? I did that but it was not a rheumatologist. To his credit he had run an ANA and it was negative.
Oh no I never want to go to that hospital or speak to them again. I had 3 of the rheumatologists scan me - all agreed I had tensonyvitis. I had been having tests for 9 months at this point. They agreed it was autoimmune and put me on the meds in December. But I struggled to get on them due to infections. By the February, because my hands were still swollen, they took me into a room for some like bullying/intervention thing?
There were the 3 rheumatologists present who had scanned me and 3 more. No matter what I said someone shut me down. They were so condescending. I left absolutely humiliated. Trying to fob me off with fibromyalgia and this pain disorder in my hand again.
If I’m honest.. if I do ever get a definitive diagnosis, I’ll be sending it to them! To show them how badly they let down a patient and how wrong they were. Awful experience.
I’m currently considering whether it would be worth seeing anyone privately. My current rheumatologist is great - but the NHS waiting times are not. Possibly thinking of seeing a dermatologist privately who can look at all the different skin issues? And I’d be more likely to be seen when they’re active? Or do they not biopsy etc. I’m pretty clueless.
That sounds truly awful. It is not uncommon for doctors to see fibromyalgia in the beginning until other symptoms start. That is the unfortunate evolution of the disease. But the way you were treated sounds is not forgettable. I would definitely send current records to all of them.
Particularly when a patient has swelling in the joints the RA and lupus question remains. I think I read of those with UCTD that progress one predictor is arthritis. A forum maybe who recently progressed to lupus did, in fact, have arthritis. So that could be while you are being watch closely.
I am unusual in that I never had much joint pain but muscle pain in the early phase.
Don’t wish for a lupus diagnosis. It comes with a fifty percent of kidney involvement and possibilities of vital organ damage.
As they became better able to diagnose lupus, they can also see the much larger category of “non-classifiable or incomplete lupus.”
Glad you have a good NHS rheumatologist. I would definitely see a dermatologist privately. It seems your many skin issues aren’t being treated successfully. She can biopsy those new spots if necessary. By the way, with all of your allergies, has anyone switched you to zinc based sunscreen?
Hey Kay, thanks for the message. Weirdly I have my first neurology appointment next week. I was originally sent for some of my symptoms looking like MS.. before I was diagnosed with UCTD. However I am still going as I've found out that some of my leg issues could be from a gene disorder. I keep getting asked by Physio's and doctors if I was brain damaged at birth or if I have cerebral palsy.
I am incredibly sensitive to heat and cold. I have never heard of PoTs though. I did read about something called Erythomelagia.. or something.. which could explain why my hand turns a worrying shade of black (they originally thought my limb was ischemic). So it could be more than just reynaulds. When I went for thermal imaging the lady was shocked, my left hand stayed blue throughout., My left leg is the same. If I go into a warm room my face burns. It embarrassing being beetroot.
I am not really certain what a neurologist deals with if I am honest, I never would have thought to ask them about the heat intolerance, so thanks for the heads up about that. I have waited maybe 18 months for this appointment. i have rheumatology on the 5th and neurology on the 6th and I'm hoping I have some good news or given some hope life will improve in some way.. any way..
It is confusing. Nerves in the body regulate temperature - super complicated stuff with the autonomic nervous system.
Your issues could fall under several specialties. Why don’t you just say you mentioned your problems and blue extremities to someone with autoimmune disease and problems with nerves that control heat tolerance. She thought I might want to mention it to you.
They will take it from there. Always better to be straightforward. Once I mentioned that I had an online friend with eryhromelgia and wanted to know if that was similar to my problem. He started quizzing the medical student on it. 😁
Something is going on with you. These things are super hard to pin point.
It may not be. But you mentioned the sensitivity to heat so it is worth bringing it up. That is their job to know if it is in their area, not ours.
There is a lot of overlap with so many of these complex illnesses. A rheumatologist treating a scleroderma patient knows a lot about severe Raynaud’s. It involves the autonomic system too. The nervous system is pretty important in everything.
It is not hard to see how affected your hands are.
They blister and in between my fingers gets very red and sore. Then all the skin peels off. I never thought that it could be related to neurology, so thankyou. I will definitely mention it. I would rate the pai I had yesterday in 2 of my fingers as a 9/10. It was excruciating and I didn’t think it would end. I’m not sure if there is some nerve pain going on when they’re swollen.
I thought it all came under rheumatology so I will be exploring other areas now and hopefully get some help/meds.
First rheumatologist was that concerned she sent me to an and e. Every doctor who has seen it has been worried. I’ve had Dopplers and scans.. MRI etc and they’re no longer worried it’s something sinister. That’s why they were trying to diagnose CRPS .. but my leg is affected and the same colour too. Pain specialist said it’s not CRPS. Considering all my other symptoms there’s just too much for everything to be a standalone illness 🙈 feel like such a hypochondriac! Hopefully this week will bring some relief and hope. Thanks for letting me vent ❤️
You can’t be hypochondriac! Just look at your feet! The neurologist may have insight into other symptoms. You never know what will help crack a case. 😮
We all have stories ..
I prefer “expressing feelings” to “vent.” The years of uncertainty and falling apart physically takes it toll.
Did you get tested for Raynaud's? It's also an autoimmune condition and sometimes overlaps with lupus or other conditions. Also, how is your thyroid? Sometimes when your thyroid is not functioning as well as it should, it can affect your sensitivity to temperature and could also cause skin changes, including rashes.
at the start of my auto immune journey,I had a rash like this in one spot on my left leg.it came and went,the creams GPgave me made no difference.it itched at times.
I’m on Myclophenate,no rash.
Best thing to do is show the Consultant the picture on your phone.Best thing to do is make a list of your concerns,most important at the top of the list.
As things are covered tick them off,usually I find most things are covered.
omg that’s really helpful.. I develop two of those things! The rash between my fingers when they get warm AND the rash on my neck - which I complained of to my last rheumatologist and she said necks aren’t affected! This is so enlightening thankyou
The immunologist has you on a lot of drugs. I wonder if they think you have severe allergies. Did you mention heat causing that neck rash?
Are you sure it is caused by heat? Mine turned out to be photo allergy from sunscreen. It is so hard to track these things down. You use hypoallergenic detergents, right? Heat started causing hives - turned out it was the detergent and the sweat precipitated the reaction.
Hey. Oh yeah I have severe allergies too. Reacted to most medications my eyes swell shut. I can only use one soap, soap powder etc. the only trigger I’ve found for my neck is being hot it seems to flare. I’ve told doctors and my partner in the past (long before I knew anything about lupus) that I think I’m allergic to the sun. I felt ridiculous saying it but it’s the only trigger I could find. My skin is also not a fan of water! Or tears.. so maybe sweat could have the same effect? When I’m driving and the sun hits my face I’m sure it’s another trigger for my eyes swelling. I get that painful rash between my fingers too. I have to hide from the cold in winter and hide from the heat and sun in summer. I spend most of my time in a dark room (eyes are sensitive to lights) with either electric blankets on or in the summer the air conditioner. But methotrexate/hydroxy combo took most of it away. I had suffered with lots of it for 16 years and finally I was on things that helped. When I finally get back onto a medication I won’t be messing it up again 😬
Oh, Tonkie, you have major hypersensitivities. It is probably hard for your doctors to even know what is coming from what. That has been true of me, though eventually they get there.
The problem is allergy testing only pinpoints one type of hyper-responsive reaction. You could have allergies to products that cause your peeling rashes but autoimmune reactions that affect blood vessels in your extremities.
Doctors are not necessarily dismissing you when they look at a photo and seem to not react or be taking it in. But if it were me I would show it to both the rheumatologist and neurologist just in case it is relevant in the total picture. We tend to think in terms of what type of doctor we need to see for diagnosis but it seems they are looking for a process or a system. Sort of like “what could happening in this poor woman’s hands to cause them to swell and turn blue? And how does that fit with … that she just told me? “
Have you asked if you could get back on your methotrexate while on antibiotics? It seems people here usually stay on their medications during an infection. You might want to ask.
Don’t blame yourself but, yes, the sooner you get back on treatment, the better. Not good to have swollen joints and all the rest.
As a kid when we all went on holiday.. my 4 siblings and my parents would get this gorgeous tan. If I spent any time in the sun I’d have these horrific blisters. Really massive ones. I’d be covered no matter how much factor 50 my mum put on me. Had joint issues since my teens. I was always poorly with infections. It still took me until I was 36 to consider I had an auto immune disease. I never twigged 🙈
Yeah I told my new rheumatologist. She said that we can only diagnose certain conditions from what happens from now on. Throughout the years I’ve learned how to cope ie avoid the sun.. water.. creams etc so they don’t get to see as much as they would if I was doing those things. The pain the sun causes it’s not worth going out in it just to show them the reaction.
I’m sorry you’ve had hypersensitivities too. It can be quite a restrictive lifestyle. Tuesday is nearly here.. I don’t think I’ve ever wanted or needed an appointment more. I’ll ask about staying on my meds through the infections - that would certainly avoid this happening again. Perhaps there’s a different one you can stay on through antibiotics. I’ll keep you posted.
Hi Tonkie. I am sorry to hear about your struggles. I have been trying to get my daughter diagnosed with undifferentiated CTD for 14 years now. Who diagnosed you with CTD? 14 years later and we are still looking for answers.
I got diagnosed by Dr Little (don’t recommend) but I do recommend Dr Watson at Withington hospital. They are very thorough and go off symptoms rather than bloods. Wishing you good luck, it’s tricky getting anything diagnosed in kids. I’ve had a similar journey with my daughter and auto immune disease.. then had to wait 9 months for an epilepsy diagnosis and medication for my son. Even though it was very clear he had epilepsy!
Sorry I missed this. You give me hope! Yes 10000 symptoms. I sent you the list in another text. Why would you not recommend Dr Little (he diagnosed you?). Thanks for Dr Watson's details. My daughter was told it's all in her head until I insisted that they check her thyroid, larynx and tummy. All inflamed....ofcourse. My daughter was 6 when she first got ill. She is 21 now with damage due to no diagnosis and associated steroidal treatment (during flare up)
so guys my appointment is tomorrow yay! Unfortunately due to steroids my rashes have calmed down.. you can still see where they were. Is it still possible to biopsy if they’re on their way out? If my rheumatologist doesn’t offer should I ask about this? Sorry I’m really anxious in appointments and don’t want to be cheeky!
Sorry to hear about your rashes but this statement has annoyed me:
“they’re not sure if it’s lupus or rheumatoid...” ?😥🤔
Surely the doctors can do better than this? “Rheumatoid “? What on earth do they actually mean?
Advice!
See a property qualified dermatologist who should/will do all the lupus tests for the numerous, complicated skin manifestations of lupus.
This reminds me of a most frustrating time I had with a professor of GENERAL PRACTICE when my arm was covered in red rashes saying to a trainee: “ Um, ah, is it an allergy, blah, blah…?”
I was eventually referred to NHS dermatology where a hip punch biopsy was taken and blood tests also done Result: DLE/SCLE cutaneous lupus was firmly diagnosed and medication was prescribed. A long story. Too many docs do not know about lupus! So as this website firmly states in bold: “ if you don’t know this disease how on earth can you diagnose it”?
Hi, sorry I mean rheumatoid arthritis if that makes it better. Just in the UCTD category. No one interested in my rashes. Can’t get a referral to dermatology. They won’t change my meds. Feel like I’ve got no control over my own body or treatment. Very low after my recent appointment. I would like to go private but I’m not sure if it will get me any further as nothing shows in my blood. And when I do have very obvious symptoms - swollen eyes, rashes everywhere, purple hand.. swelling.. no one seems bothered about that. Lost all hope I’ll ever have any semblance of a life. I’m terrible off meds, it’s not much better on them as I’m so fatigued and nauseous. What’s the lesser of two evils 😞 sorry for such a negative reply. I see no point in pursuing or trying to get the right treatment or see the right people I’m dismissed by everyone x
Your rash looks identical to mine, and it hasn't disappeared in over 2 years. It was my first sign that something wasn't quite right. Is your rash blanchable (does it disappear when you press down before reappearing)? Does it itch? Is it scaly? Is it persistent and never changes? Does it appear to fade slightly when you are standing up or in the cold? Like others on here, doctors first thought it was fungal, but medication did not help. Steroids did not help either. I will let you know what the biopsy shows, but it might be a while as everything takes so much time lately. FYI mine is blanchable, smooth, not itchy, and fades slightly when I am cold or standing up which gives us a clue it is possibly microvascular. Have you been assessed by a dermatologist yet?
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Facial rash or not?
Feel like I'm going in circles trying to figure out what's wrong. I think it's lupus! 
First recognisable flare
Reoccurring chest rash
is this a lupus rash? 
