I have an appointment coming up with rheumatoid at the hospital due to high anti nuclear antibodies..
I already have hypothyroidism, hashimotos, oral lichen planus & currently on eye drops for possibly Sjögrens??
I have this rash on my face & had a flare up on my chest also... photo on another post) my face is so tingly/itchy, almost feels sunburnt (which I’m not) could it just be rosacea causing dry/itchy eyes also??? X
I was treated for Rosacea back in 2012 when I had a rash on my face, it then turned out that the rash was due to Scleroderma when I was diagnosed in 2014. My GP said that the rash was probably an early sign of the disease. I too have anti nuclear antibodies.
The rash has now disappeared with the medication that I take for Scleroderma. Take your pictures to the rheumatologist, cos they can suddenly disappear.
Good luck.
Ok Thankyou for response.. may I ask what other symptoms you get with scleroderma?? I can’t possibly add more to my life lol!!!
Yes I’ve got a ‘symptoms’ album ready for my appointment next month xxx thanks again x
I have an overlapping syndrome, polymyositis with a Scleroderma overlap. My hands are fairly curled (sclerodactyly), this was the start of it, skin gets very itchy, get very tired, Raynauds, dysphagia - swallowing problems, I can only eat a limited diet cos of the risk of choking. I hope this helps but at the end of the day, keep a Diary of events, show photos cos when you get to see someone it’s very easy to get off track and ask plenty of questions.
We’re not experts here but at lest we can pool helpful information between us.
My skin is so itchy, even my fingers!!! With regards to swallowing, I always feel like there’s a lump in the throat like I can’t eat too much, but the hospital have never given me a scan & refuse to 🤷🏼♀️
Yes, I will write down as much as possible & I know your not experts but I almost lol.. I trust this site more than the doctors. Everyone seems to know what they’re talking about & the doctors don’t 🤦🏼♀️🤦🏼♀️ xx
I have to shower twice a day to stop the itching and then I use Cetraben cream which was prescribed by a skin specialist and one thing I forgot to say was my face went very puffy and my soles of my feet are very tender. Keep the diary going. I find this site very useful 👌
Ohhh was going to say, my face feels puffy & my eyes the last few days.... like an allergy!! I’ve been taking piriton & rosacea cream but it just stays the same 🙄 😘😘
Maybe you should see your GP and see if you can get an earlier rheumatology appt.
Worth a follow up.
I’ve been waiting 9 months and rang the hospital last wk.... so it’s now October 22nd... think I was lucky to get this 🤦🏼♀️🤦🏼♀️🤦🏼♀️
Did they give you a reason why no scan? I could eat very little, was losing weight and my GP fast tracked me for an endoscopy.
I was referred by my Doctor to the hospital (think it’s on my previous posts) when I turned up he basically asked why u was there!!! He said he has no reason to scan me unless I had cancer 😳😳😳 horrible horrible man Indeed!!! End of!! Xxx
When I went for my follow up I did have ulcerations, but was scolded for not having cancer! All I could mutter was "but I didn't think I had".
I have Sjögren’s as my main rheumatic disease (dry eyes just tip of iceberg) plus Hashimoto’s Hypothyroidism and probable small vessel Vasculitis. Also Got +ANA.
I think others here have said that Lupus rashes cross the bridge of nose where Rosacea tends to affect the lower part of nose - so to me yours looks less like Rosacea in this respect. I’ve had similar rashes to yours when younger and I think this is where the crossover between connective tissue diseases start. You can have Sjögren’s and symptoms of overlapping, closely related diseases such as Lupus, Scleroderma and RA. Or any of these and overlaps with others such as Vasculitis and Myositis.
And Rosacea is also much more common in those with rheumatic diseases than it is in the general population I think.
But to me, who has neither Rosacea nor Lupus, this looks more like a Lupus butterfly rash than Rosacea. But I’m not medically trained so please don’t take my word for it. Take photos with you to show your rheum.
Thankyou xx it’s such a nightmare with all the symptoms, like you said, the crossover!!!
When I mentioned Sjögrens a while ago, she literally took it with a pinch of salt & just prescribed me drops.... it wasn’t even taken serious or asked me symptoms etc!!!! Good job we do our own research!!!!
Yes will keep all pics ready for my appointment, thanks again xxx
Just another thing, with your ANA, do they always remain high or can you bring them down& what symptoms do you get from Sjögrens that’s not thyroid??? Xxx
🤬about general (RA/ PsA) rheumatologists like my first one - who agreed I probably had Sjögren’s secondary to my misdiagnosed of RA.
It took a relocation and a lip biopsy plus high immunoglobulins, raised CRP and high PV and +ANA to confirm.
A good rheum who knows about Sjögren’s as a full blown systemic disease may be very hard to locate but worth it if you don’t get diagnosed with Lupus (if your anti DsANA is negative and no biopsies show Lupus)
The great likelihood is that quite a few who are diagnosed with Fibromyalgia or UCTD, seronegative RA, Lupus or even MS - actually have Sjögren’s as their main disease.
This is what I was told by one of the few Sjögren’s experts in the UK - who btw is also the president of the British Society of Rheumatologists.
Following 2 years of severe RA type symptoms my worst symptoms have been neuropathy, sensory ataxia, tremors and fatigue (which is terrible). The dry eyes and mouth I’ve had all my life and barely notice now - same with constant tinnitus. They don’t progress as long as I keep on top of them with drops and gel and I do also have punctal plugs as I forget to use drops as much now due to numbness around my eyes from neuropathy.
My present rheum is great but not a Sjögren’s expert so I think she does listen to my research. I also have some pointers to early Scleroderma but keep being fobbed off by neurologists with functional overlay or FND. I’m a fighter but the inflammatory fatigue does slow me down and fighting Doctors takes guile and energy that I presently don’t have! X
It does look like one, and is similar to ones I've had. However, as Twitchy has said, we aren't medically trained. Keep all selfies to show them x
Morning xx Rash you’ve had?? For lupus?? I’ve tried to go load one of my chest area & it’s not loading 🤦🏼♀️🤦🏼♀️ xx
Yes, I've had the classic "butterfly rash" a few times. Like many here I don't have a clear primary diagnosis, only a secondary one of Raynaud's. I may or may not have Lupus/systemic sclerosis/ other auto immune type thingies. Usually I go to a Conective Disorders clinic within the rheumatology Dept.
I always say I don't care what it's called as long as I'm being treated ( and many of us take the same drugs for different conditions) x
We're a friendly lot here, and will try our best to help you through the ups and downs x
I agree!!!! I just want to be treated & not get worse 🤦🏼♀️ this site is fab!!!! Appreciate your reply 😍😍
Hi Lisa, I have hashis and a Sjögrens/lupus overlap and went to the doc years ago thinking I had rosacea. One even said I had. The next one said it was never rocasea. To me, you look like what happens to me, but I’m not a doctors. I think the others are correct....take the photo to your rheumy and write down every symptom. It took me a couple to find the right rheumy. Good luck and don’t worry x
Ahhh Thankyou, it’s just so frustrating & time consuming, In the meanwhile, we are suffering!! My appointment is next month...after being in an ‘urgent’ waiting list for 9 months!!!
I’m planning on being fully armed ready for them lol!!!
Thankyou xx 😘
It’s so frustrating right? Just try not to get stressed by it or anything...it’s really bad for you. Also, rest when you are tired. Someone recently explained the tiredness brilliantly to me...like wading through wet concrete! X
Omg rest when tired... at the minute, I would live in bed 🤦🏼♀️😂 yeah that’s exactly what it is..... concrete 😘😘
I’ve just read your previous posts...we sound very similar. I’ve been feeling nauseous since I was 28 and have felt like a hypochondriac..even my lovely husband said to me lots of times before they worked out auto immune that it’s hard to keep sympathetic when someone feels ill so often. Anyway, I def have Sjögrens and they think lupus too...but different docs think overlap/more lupus/more Sjögrens. The bottom line is that they treat them more or less the same way...and so the diagnosis is just words. GPS think that Sjögrens is a dry mouth/eyes etc...but it’s SO much more than that....feeling like you have flu every day! Look at BSSA and Lupus UK websites.
I’m on a clinical trial for biological immunosuppressants just now and still taking hydroxy...so hopefully there is some help out there. I have also started to see a naturopath because I had read a lot about leaky gut. It makes sense to me, but hard to follow perfectly. The autoimmunity handbook is a good place to start. Sorry...on a roll...but having a little lie down...with my phone!! X
Awwww having a little lie down....😍
Omg leaky gut is so bad 🤦🏼♀️ I literally took everything from my diet in the end, not realised I needed good fermented foods to heal it!! I saw a nutritionist & it’s so much better now thankgod!!!!
I know what you mean about saying you feel ill all the time, feel like I’m having a flare up now & wanted to ring the docs (maybe my thyroid meds need tweaking) just couldn’t face speaking to reception & explaining ‘I feel like shit’ basically & I don’t know why 🙄🙄
Will
Look at those sites Thankyou.. and the book 👌🏻
Hope you wake up in the morning with a huge spring in your step lol 😘😘
Would you consider going to a private dermatologist? I know you are unlikely to get an appointment immediately if you have to get a referral. Rashes are important and some are hard to diagnose. It would be helpful for your rheumatology appointment if you have a dermatologist’s opinion. A photograph will be helpful but a dermatologist would want to see the eruption closely.
Yes!!! Somebody has given me details of a really good one apparently but was going to wait & see what hospital say but it’s definitely my next step 😊
Ohh just realised you said would be better to see dermatologist before hospital. Ok will see she can fit me in x thanks for the advice xxxx
It would be great to have someone see your rash ASAP while it is there. You could even explain to the receptionist that you want to get an appointment so that you have the dermatologist’s opinion to take to your consultation. I once had a photosensitive rash on my arm that my rheumatologist wanted biopsied, but the dermatologist felt the rash was already in too late a phase to get an accurate report. Photos are good but may not differentiate between rosacea and lupus. Your g.p. could also help to get an urgent dermatology appointment if he thinks it would be helpful.
Oh thanks, that would be fab. I’ve just googled private & they’re up to £200! Just wondering if this is the norm 🤔🤔
Wow, that's a classic malar rash. Do you recall what set it off? Does it come and go? Def show this to your doc especially if you have any other autoimmune symptoms.
Ohhhh nooooo 😫😫 been trying to think back when it started!!! It’s get better/worse but not noticed as much thru the summer as I was tanned so weather I had it I just don’t know 🤦🏼♀️
With rosacea, do you get spots on the cheeks as well????
I’m just praying it’s not lupus 😔
Yea, rosacea can really appear anywhere and it’s actually not uncommon to have both. It could also be a case of just general vasculitis (blood near the skin). It’s really the pattern that was striking. However, not all people with Lupus have malar rashes. If you have any photos that would be helpful.
Most important thing to know is: to get a diagnosis of Lupus a rash isn’t enough, so don’t worry too much. You have to have a minimum of 4 criteria to get the Dx. So, if you’re having any other symptoms that’s when you prob should talk to a doc. For now track the rash and maybe go see a dermatologist?
Take care and keep us posted! ❤️
I’m just hoping it’s not as I already have a few autoimmunes & have tested positive for high ANA, been referred to hospital (appt Oct 22nd) and am showing signs of it but I know many things can mimic it etc.... I just don’t want anything else 🤦🏼♀️ as you can imagine!!
I’ve tried uploading more pics & it wouldn’t let me. Was also trying to think about what set all these new symptoms off & it was around Nov/December last year & going through quite of a bit of stress with my sons dad at the time & just couldn’t cope!!
Thankyou & I will do!!! Xxx
After talking with so many people, stress is #1 or #2 for triggering malar. UV exposure is only one cause - the most popular for docs, but the data says there is more than one cause.
Hi Lisas_tired,
Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, chest, hands and feet. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...
If you haven't already, you can read our booklet on lupus and the skin here lupusuk.org.uk/wp-content/u...
The Lupus Encyclopedia provides helpful tips and information on how to treat dry/itchy skin which is listed below:
•Take shorter baths and showers
•Do not use soap on most body surfaces, except underarms and private areas
•After bathing or showering, pat the skin dry; do not rub (rubbing removes moisturising oils)
•Avoid using fabric softeners. They irritate dry skin.
We published a blog article on coping with itchy rashes which you can read here: lupusuk.org.uk/coping-with-...
Before attending your appointment you may like to read our blog article about getting the most from medical appointments here lupusuk.org.uk/getting-the-...
Please keep us updated, wishing you all the best.
Thankyou so much xx just 1 more question, do you know roughly how long they give you for hospital appointments? Is it rushed like doctors appts or will have more tests done etc?? Xxx
That's okay, I am glad you have found the information helpful. I honestly cannot state how long you are allocated for an appointment at a hospital. Perhaps you can ring the secretary to ask? Best wishes, Chanpreet 
😘😘
Lisa has anyone considered Dermatomyositis? I was diagnosed with it 15 or so years ago after much the same symptoms as you (particularly the rash across the face and chest), also weakness particularly in my arms (I couldn't even change a light bulb). I hope you get to the bottom of it, it took a couple of years to diagnose mine which was very frustrating. There's nothing worse than knowing somethings wrong but the medics can't identify what it is. Xxx
Hi SouthHams
Nobody has even taken the time of day to be concerned about it!!! I was explaining to the doctor & she just wrote me a prescription for rosacea cream, at the hospital, the consultant didn’t even want to see a pic of when it flares up!!
About to make a private appointment with a dermatologist now so fingers crossed, I’m sure she will get to the bottom of it xx Thankyou, what medication do you use and what happened with the weakness??? X
Lisa it's a long story so I will try and be as brief as I can. In my early 40's I knew something was really wrong as I had this rash over my face and chest and felt really tired all the time and couldn't do much physically, even the smallest jobs frustrated me as my arms were so weak. I kept on going to my GP and he thought it was just an allergy to something. I took myself for various allergy tests and tried giving up different foods and changing washing powder etc but nothing made any difference, in fact it got gradually worse. It's horrid knowing there's something wrong but you can't get to the bottom of it and nobody seems to care or even listen to you. On one of my many visits to the doctors my GP happened to be on holiday so I saw a young doctor, he gave me a thorough exam and said he had an idea what it might be but it was a rare condition and I needed specialist tests, he sent me to the hospital. It was then I was diagnosed with Dermatomyositis and put on high dose steroids (80mg), they even took pictures of me and put them in a text book (they had the decency to put a black band across my eyes - I felt like I was in a contact magazine!!). But at least I now knew what I was fighting. The steroids made a huge difference and I was able to function again, and I made regular trips to see a Dermatologist.
After 12 months or so she said I had been on the steroids too long and wanted me to try an alternative (Azothioprine). Unfortunately I was allergic to Az as it stopped my body producing blood cells (red, white and platelets) over Christmas and the New Year break I went steadily down hill and couldn't do anything, just walking up the road 20 yards tired me out. I went to see my GP and was sent straight into hospital, they told me it was amazing I was still alive as I had nothing in my blood (hardly any blood cells), they gave me 14 blood transfusions one after the other to replace my blood. So after that I'm about to go home and am sitting on the bed waiting for my wife to pick me up when my body started to shake all over and I passed out, it transpires the last transfusion was infected and it knocked me for 6, I wasn't expected to last the night.
After 3 months in hospital, the first few weeks of which I don't remember, I was finally allowed to go home. I won't go into what I went through in hospital suffice to say it was a pretty unpleasant and traumatic time, but at least I made it through in the end, so I'm seriously thankful for that and grateful to the hospital staff that made me better. My specialists told me the Dermatomyositis had gone, and put it down to the trauma that had re-booted my immune system. Quite amazing really, in a funny sort of way the infected blood had ultimately made me better!
Now 12 years on I am fine, ok I have PMR and am back on steroids again but that's no biggie. I am a bit concerned the DM may come back one day but thankfully so far so good. I hope you get diagnosed sooner rather than later, and if it's not DM then fine at least you can rule it out.
You have my best wishes. Get well soon and take care of yourself. Pete xxx
Hi Pete, sorry for late response, have been away. That is crazy!!! Must have been awful for you! That’s funny you say about your arms feeling weak, when I’m in a flare up, my arms are so weak, I was queuing at the till & literally could’ve even hold anything! Can’t believe what you went thru :((
Nice to eat everything is under control now & thanks for your info xx will definately look into in xxx take care x
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