Hi, since 2018, after taking a brief course of steroids, I have suffered with a facial rash. Initially I had it round my eyes (under brow, and under eye) down my cheeks, round my collarbone and on my nipple. I also had a small flare of it on my belly button. It was treated with hydrocortisone cream, which only kept it under control; it didn't cure it. It 'went away', and I put that in single commas because it never really did. The itching and rash persisted round my eyes and in 2019, in desperation, I asked for a rheumatologist's referral. I asked for a rheumy' because I also had tiredness, joint & muscle pain and what can only be described as 'general apathy'.
Due to Covid and NHS wait lists It took 11 months to finally see a rheumatologist, and when I did he was worse than useless. I had no autoimmune 'markers', i.e. I had a negative ANA test (I always do - I've had few over the years since about 2014) and he just threw me out, telling me it was Mast Cell Activation Disorder, maybe, but there were no tests for it so I could just buzz off. I sent letters of complaint and got some other testing done, but it showed nothing.
After all my fighting I was so fed up with docs I haven't gone near them in over a year. As the warmer weather started I noticed my eye rash was getting worse again and then, a couple of days ago, I developed severe red, burning skin on my cheeks. However, it does NOT resemble a classic butterfly rash, going up onto my eyes, as it does.
Because I have sore, itchy eyes all the time, as well as the rash, I suspect I might have Ocular Rosacea (Rosacea was dismissed back in 2018 - I'm not sure why, possibly because I had the rash elsewhere as well, and I have never had any spots or pustules). I think I might have had ocular rosacea all along, which is now turning into full-blown rosacea. I have been drinking (one small) alcoholic drink a night for the last 2 weeks and I don't normally drink. I always flush very badly with drink so I find this more than coincidental
However, as I say, I DON'T normally drink so that doesn't account for the constant eye rash I have most of the year. I am also concerned about ignoring the joint & muscle pain, which is quite debilitating but which no doctor has ever taken seriously.
My question is COULD this be Lupus, even although I don't have any positive ANA testing? Would I be showing some other definitive sign that would indicate Lupus? Or is it much more likely to be a slightly atypical Rosacea? Most Rosacea sufferers seem to have acne and so forth - me, I have sore itchy eyes and burning itchy skin - now all over my face.
Anyone who has either condition with facial rash, or who has negative ANA tests, I'd be grateful to hear from you. I need to go to a doctors because I am in so much pain, it would be really helpful if I had something definitive to offer them.
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Chancery
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Hi Chancery. Yes I have Rosacea and Lupus. I was diagnosed as having just Rosacea
And fibromyalgia first. It is possible to have
Lupus and Rosacea. I don’t have bumps.
I have mostly red burning skin when either Lupus flares or rosacea. Going to a dermatologist would be helpful. Never put steroids on your face. Ever!!! Makes burning and flushing worse. Gently press cold pack wherever you have burning. Look
Up Rosacea diet or anti inflammatory diet.
Sounds like you need a better ophthalmologist for rosacea in eyes. Plz
Message me (is that possible on this forum?) for more info if you need it. Last,
Thanks, Titters. Burning is my chief feature, followed by itching. The skin on my face has gone very red and is exceptionally sore and somewhat swollen. I have a bit of a big red balloon face, which is what I got with the initial steroids that triggered all this back in 2018. I was using hydrocortisone cream in the first year or so, because it was the only thing that worked but I got worried about using it on the delicate skin round my eye so stopped. I haven't used it this time. This time I've just been using aloe vera gel and then E45 or coconut oil on top to try and stop the skin being so tight.
I never have any luck with ANA testing and what you say about them saying you need 'positive' blood work has been my experience, although the Lupus sites say that you can have it and be negative, but apparently doctors and rheumatologists don't believe that.
What have you had from the doctors for your rosacea? Anything work? I was thinking of asking for oral and topical antibiotics, since pain and inflammation is my chief complaint. It's one of the things I find a bit atypical about mine - I get itching and pain (and burning) big time. No spots or papules or rough skin. There's nothing remotely acne-like about it. Do you get the acne or anything like that?
Also, was it simply the blood tests that made them say you had Lupus or did something else make them decide it wasn't, or wasn't just, rosacea?
Hi my love, nothing useful to offer but a hug, so sending plenty. Was only thinking of you yesterday as I spotted you on a 6 year old thread and voila, here you are. I think rosacea can occur with Sjogren's too and as far as I know all autoimmunity can be seronegative, which helps you not one jot xx
We DEFINITELY have some weird psychic connection because I was thinking of you the day before that. How weird is that? Yes, the seronegative thing has been a major blight for me the past decade. I've shown loads of classic autoimmune symptoms for years, but as soon as they see negative blood tests I'm dead in the water. I think maybe it's because with Lupus "most" people have positive ANA tests. I don't know what percentage "most" is, but it does make you wonder if the people who DON'T have a positive ANA test are just being passed over until they get so sick it's unmistakable. You're supposed to treat it early to stop it getting worse, but if you are negative I seriously doubt that happens.
But how are you? I'm crap, barely managing to function, crushed by trying to deal with stuff on my own (my rheumatologist debacle and Covid restrictions meaning you HAVE to talk to a doctor on the phone has left me struggling) and I'm so bored with it I don't even want to talk about it for fear I'll drown in my own whinging. So please tell me you are thriving and having a great summer.....
I think we have the blight of seronegative in our psychic connection too....I'm sure that is why I'm getting nowhere with the Sjogren's, and all the rest in fact. I think it is about 30% commonly without bloods for Sjogren's - usually SS-A. You are spot on with need for early treatment, exactly the same for Sjogren's, but people get sent off as all good. (As with PA, and Coeliac, and thyroid - testing is mediocre at best and misses people and all that does is make us all worse and more expensive in the long run.) Sadly we are not doing our usual you down, me up thing as I'm also a bit crap and struggling to make head way. Partly due to supplements becoming 'unavailable' and having to stop too much at once. But, my favourite plant is covered in gorgeous flowers in my little back garden so I go out and have a life-enhancing sniff between downpours and try to think about nicer stuff. Please don't drown, I'd miss you x
More weirdness - I found that yesterday too! I think the most telling phrase in it is "If the question, "Can an ANA-negative person have SLE?" is asked of a new, untreated patient, the answer is probably no. If it is asked of a patient whose test is negative years after the diagnosis, it may be impossible to say yes or no." I think that is the position my rheumatologist - may he rot in Hell - was holding, and I suspect it's the general consensus. So I'm definitely a no, which I suppose is something to be grateful for - I'll get to work on my gratitude straight way.
As for your sweet self, all I can say is 'Oh noes...' ; last night I was indulging in a fantasy where I came down to see you (although I've COMPLETELY forgotten where you are now, but felt it was somewhere coastal - maybe that's just part of my wish-fulfillment) and we could sit out in your garden (I visualized you with a nice coastal garden bathed in soothing sea light, so some intuition there!) and we could sit snuggled up under one of those ridiculously expensive cashmere throws you see in 'lifestyle' magazines, perhaps under a gazebo or some such, and just hold hands. Nothing romantic, understand, no this is purely a comfort of touch thing, a shared bonding. I feel you and I might be good at that, sitting still under our cashmere, watching the rain over the hushed ocean. If we could throw in a dog or two to this scenario so much the better. Or even a cat. There's room in our cashmere haven for three, or four, or more...
Of course, no alcohol for me in this fantasy scenario of reassuring comfort, otherwise we wouldn't need the damn cashmere with the heat off my very unhappy irritated face.
That is a telling phrase. I was hoping for more comfort from his view in the following paragraph that it doesn't really matter because a symptomatic patient needs treatment whether it is definitely lupus or not.
Your fantasy has, as ever, put a huge grin on my face. Some cashmere-snuggled hand holding in company with as many dogs as you wish (preferably the hairy sort with plenty of coat to get your fingers into - any size, shape or colour) sounds bliss. We'd certainly have been very wet here today without a good gazebo, but sadly no ocean. We'd talked about Morecambe because if I remember you were there for a bit (? may be completely wrong about that) and it isn't too far - in fact I was there a couple of weeks ago so that was the last bit of sea that I saw (!) with sunlight on the water. We are surrounded by hills, and neighbours, and weeds. I'll start tidying.......xx
Yes, I thought that was rather lovely and wanted to go and confront my rheumatologist with it and say "SEE? That's what doctoring looks like." Mine seemed to be under the impression that his job was to rule out autoimmune conditions, not to actually help the patient. He was a 'tick-box get out of my office' type extraordinaire. Sadly there are far too many of them in the NHS, or maybe just medicine in general. He actually said to me at one point, during our arguments disguised as phone calls, that he 'only worked part-time' and didn't have time to deal with my letters. I believe I wrote two, one of which was a complaint. Apparently his job is only to deal with his work load and he's done. He was certainly 'doctoring' like that. Yes, I'm still bitter. I haven't trusted a doctor since.
BUT that's all water under the bridge (yeah, I sound like it is). Let us focus on the far more interesting subject of how many small fluffy creatures you can get under a throw with two disillusioned women in need of solace and hugs....
P.S. Are you in Cumbria then? Or are you below Morecambe rather than above? Either way, one of the nicest parts of England to live. During my years in Cumbria and Morecambe I always wanted to live in Silverdale or Grange-over-Sands. Both gorgeous. I really like the Solway.
P.P.S Do not, under any circumstances, tidy for a visit from me, not even a fictional one. In fact, I insist on dust, pet hair and all manner of clutter being dispersed throughout the house. The one thing I have learned through all this miserable sub-par living is you start avoiding people and social stuff because you are ashamed of your house but don't want to make the effort, or don't have the damn energy, to clean the house. I will know by the extent of the disaster just how much of a soul-mate you are. Of course, I know that already really; you're my sister from another mother. XX
Sounds like our rheums are brothers from another father.....mine insisted that my bloods were sparklingly normal and that there was no sign of any autoimmunity (totally ignoring the ones already diagnosed and the family history), although in writing he did amend that to no sign of anything rheumatological. Either way, nothing that he was interested in diagnosing so no symptoms that he wanted to hear about. The only good thing was that (probably to get rid of me) he sent me to a neuro. But it doesn't make you keen to spend time trying to explain, again, to yet another.
Silverdale for preference, but only because I know it better and love it. The only place we've been to this last 18 months (when allowed) has been Leighton Moss and being a bit fond of plants also to look at orchids etc at Silverdale, Trowbarrow and Gait Barrows. It was a diversion on the journey home that took us into Morecambe. We are in Rossendale, Lancs.
You really are my sister and you are spot on with the social avoidance. You will know that I am your soul-mate, without a shadow of a doubt. The only thing we sadly don't have is pet hair as my current dog is the invisible kind and really doesn't shed much! The rest we have in spades - in fact you'd need one to shift it xx.
Rossendale - what larks! I did a mega-tour of a lot of the small mill villages around there during the time I lived in Manchester. We were desperate to escape the crime in Manchester (never seen crime like it before or since, thank God) so we looked around all these small villages where, at the time, you could pick up houses for a song. We looked at the cute ones like Hebden Bridge and so forth, but they were already getting a bit pricey for our non-existant budget so we tried Rossendale and looked at houses in Rawtenstall and Bacup, and other places I've forgotten, but they weren't quite gentrified enough, particularly Bacup, which was awful. In the end we went to Morecambe, but ironically I think we'd have been much better off in the mill towns. We didn't do enough research to discover that Morecambe was full of drug addicts and ASBOs who had been thrown out of Manchester council housing; it was just frying pan to fire, which was a great shame because I loved Morecambe in essence. Ah well....
But still, although they're a bit cramped, the houses where you are (although we saw some HUGE ones when we were looking), it is VERY green with lots of canals and stuff. I loved the way they were all built on hills and on water. The canals were my all-time favourite thing, probably my only favourite thing, from Manchester. Spent many hours escaping horrible estates, noise and stress on long walks along canals.
And yes, Silverdale is gorgeous. Again, in the 6 miserable months of house-buying failure we spent in Morecambe we spent a fair bit of time round there, pining for the money to afford a house there. Now, as a much older and wiser woman, I realise my dad was right and I should have studied law and stuck to writing as a hobby. If I had, I'd be wealthy, with a big (paid-for) home and a holiday home by now, and that would be after divorce! Ah, hindsight's 20/20 vision.....
That made me chuckle. Yes, hindsight is a wonderful thing and if only I'd known - mainly known myself better, in fact - then my decisions would have been very different. But as someone far braver than me said recently, you can't wait until life isn't hard anymore before you decide to be happy, so that is my new mindset.
A lot of Rossendale is bad and far from gentrified, but improving, and the hills and the stone and the people make up for a lot. I've lived in worse and felt far less at home. We have free range sheep and I love that. Hebden is great but the flooding would put me off, so it better be Silverdale after all, should my ship come in.......
Sorry, with all this nostalgia and desire for snuggles and comfort, I keep forgetting to ask you - what supplements did you lose? Is this a Brexit problem?
To be honest not certain, but I suspect it is more the Codex Alimentarius and its effects on supplements - within EU but seems also to be being adopted in US which is where mine were made or ingredients sourced. At present I've lost my multi vitamin/mineral due to reformulation (and it was the only one option I had, so now introducing individual supps for each element), both thyroid and adrenal glandular gone with no feasible alternative as yet and liver support likely to be going as also reformulated but not yet tried. They even have their eye on B12 I understand and NAC has problems potentially, if not already, so this could be quite an issue for many. Constantly hard to find things. I'm worried xx
Oh dear, that sounds like sh*t. There's nothing worse when you have worked hard to find your own regimen, and are coping without docs, and then they pull the rug on your support system. I read Malcolm Kendrick's blog and I remember recently someone saying that they were pulling lots of supplements. Part of the whole Reign of Terror that Covid has opened up, maybe. We've effectively said pharmaceutical companies can control people travelling, and what they can do - it' s not surprising that they might have an (under)hand in getting lots of supplements 'disappeared'. Dear God, I'm beginning to sound like a conspiracy theorist. The worst thing is though that nowadays conspiracies aren't so very fantastical any more.
I'm going to have to bite the bullet and phone the doc on Monday. I've been putting it off, but if I eat anything hot or put anything on my skin, other than aloe vera or coconut oil, I swell up like a big red sore balloon. I look like a beetroot, writing to you right now. I need some help. Damn, really cannot be bothered with this.
Ah well, I shall keep my fingers well-crossed for you - that you find something to replace your losses and that you somehow find a miraculous lift of spirits amidst all the drama that is life in 2021. At the moment all I ever think of is the (ironic) Chinese curse "May you live in interesting times." We're sure as hell doing that. Kisses and hugs to you. XXXXXXXX
Nice to hear that you are reading Malcolm along with me! One small oasis of sanity. More power to his elbow.
Good luck with the doc and becoming less beetroot-like, I'll be thinking of you.
We have been saying the same to each other throughout. I can't see how we all will go back to being less polarized when we have had fear forced into our psyche. But we personally will try and I wish you calm and joy. Hugs and kisses returned xxxx
Hi Chancery. The important thing to do in my opinion is treat the symptoms on your face. Lupus involves mega fatigue, joint pain, organ involvement ( not always) brainFog, depression and if I’ve missed anything someone will put it right. There are two
Rosacea forums where I learned a lot. Google search them I’m sorry I don’t have their addresses. No steroids. No cortisone cream EVER on your face. You need a good Derm to get it diagnosed properly. And treated properly. There is a rosacea caused by steroid creams on the face. One thing might help is a good antihistamine right now to see if it helps with swelling and
Itching etc. plz let me know if I can help further. Titters
I hadn't thought of an antihistamine, thanks for that. Ironically, I just ran out of quercetin at the same time this flared up - perhaps not a coincidence!
Rosacea and the lupus malar rash are hard to distinguish. Rheumatologists and dermatologists can spot a lupus rash if it is distinctive.
In answer to your question about the rash and negative ANA. There would have to be more clear cut symptoms to consider lupus with your symptoms, I think. Other things cause fatigue and muscle fatigue. The rheumatologist would need to see signs of inflammation in joints, skin, organs as well as abnormal blood tests to consider lupus.
Mast cell activation disorder can be debilitating. There are tests and immunologists could help with diagnosis.
It is difficult to answer your question. Lupus can start out with vague symptoms and negative tests. Maybe the best answer is you do not have diagnosable lupus at this time.
Thanks, K, my current thinking is I most probably have neurogenic rosacea. There's a (very) slim chance it might be erythromelalgia, but I think that's less likely. I think the reason Lupus is so 'appealing' is because it would also explain all my muscular pain, joint pain and exhaustion - that would be terribly convenient! But I know I will probably die not knowing what it is; they just don't research a lot of these conditions which are seen as 'female complaints' and, as such, are all in our heads.
Actually the US puts millions of dollars into lupus research. They have come a long way in terms of understanding the mechanisms even in my lifetime.
It may seem convenient because of the fact that these conditions affect the entire body. But they have to affect they body through autoimmune immunity.
Don’t give up but it is best not to try to diagnose yourself.
I know how they affect the body, Kay - I was being facetious. I wasn't wishing I had Lupus, I was wishing I had a convenient explanation for my symptoms. And there's a difference between diagnosing yourself and trying to get a handle on what's happening so you've got something constructive to take to a doctor. I'm doing the latter.
What I meant was when people have confusing symptoms that affect various bodily systems, they can look to lupus as the cause. Sometimes it is.
You should definitely report new symptoms. Ask specific questions like why do you think this rash is not a lupus rash?
The mast cell activation needs to be looked into. There is a lot of hope with that diagnosis. Your rash may be more flushing. I had MCAD ruled out. Like you, I had facial rash.
Do you have allergies? React to heat, pressure or medications?
Yes, it's heat that I am reacting to primarily. That and alcohol. So far I haven't noticed anything else specific, but heat is the big one. I don't drink hot drinks because they hurt my TN, but I do eat hot meals and they've started making me burn up. My face is sore, itchy and slightly red all the time, since the two weeks of alcohol consumption triggered it. But I've stopped the alcohol for about a week now and while it reduced the 24/7 pain and itching and the oedema, I'm still reacting to hot showers, hot air or steam on my face (e.g. cooking) and anything hot I eat. It lasts hours too, and once I've got a couple of meals etc under my belt it's just permanently sore and itchy, and red.
I had the bizarre experience tonight of tasting a single rice grain out the pot to see if it was cooked and realizing after I'd sat down again that my face was heating up and getting irritated - from a SINGLE grain of hot rice. You have to admire that kind of sensitivity, even if it is a pain.
While my overall redness went down after stopping the alcohol, the area it's covered has got worse. I now have it on both cheeks, round my eyes, to my brows and worst of all, under my chin. It's got very red and irritated there and is itching like mad.
I do react to heat in one other way (as well as my TN, which is temperature-triggered), which is in cold weather if I go back into warm and sit down, like on a bus, I get REALLY severe skin itching along my flanks, buttocks and shoulders. I've had this for some years now.
I do have 'allergies', as in things I react to, mostly medications, like Ibuprofen (attacks my gut), aspirin which I can't take at all (again, gut), codeine (causes Sphincter of Oddi attacks) and Elastoplast. But I also tend to have adverse reactions of one sort or another to drugs in general. And I have sensitive skin. And I have IBS. I'm a sensitive soul all over, basically. Bu this itching and pain is too much to endure. I'm going to have to bite the bullet and phone the doc. The trouble is I suspect it might not be conventional rosacea nd is maybe more neurogenic. Can't see a GP being familiar with that!
Wow - I can see why the rheumatologist thought MCAD. The symptoms of extreme reactivity don’t really sound autoimmune. Even the sun sensitivity many of us have is not really like that.
I would get in to see an immunologist if at all possible. You really do sound in the allergy/ mast cell category. When I had the red rash on my cheeks they said it was flushing. I get it from autonomic dysfunction but people with mast cell disorders flush too. I think it is the vasodilation.
Your itching sounds consistent too. Temperature changes trigger mast cell activation.
You really need to tell your GP that the rheumatologist suspected mast cell disorder. These disorders are debilitating but can be controlled with less toxic medication than autoimmune disease.
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