I think I may be experiencing the malar rash. I wondered if anyone who suffers can help? I'm very fair skinned and usually quite pale but have been noticing that I'm getting very hot red cheeks. There seems to be almost an arc under where my eye bags are that points up to my nose and runs along my cheekbone. I felt like I was starting a flare as had usual fatigue first, then felt a sore up my nose, in the evening my cheeks wear burning like I'd been out in the sun and got slightly burnt, the brightest part on front cheekbones but with a line almost, it seems to of gotten worse towards the evening. Today I was in the car and it was sunny and could feel them burning again! I've tried taking selfies and it does show up but the pictures aren't great as the lighting wasn't that great. There are no raised bits just flat and hot.
I'm not wishing it on myself - I'm just not a hot kinda person, more the chilly pale type!! Lol! Sending well wishes, thank you for taking the time to read this.
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Jo883
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I had a neurologist appointment last week and he asked me about my red rash and "different texture" skin on my cheeks and nose. I am not yet formally dx SLE yet but APS, Thyroid, Raynauds and mild +ve tests for SLE. Neurologist first got me onto the investigation path in association with a haematologist, following stroke, TIAs and miscarriages.. I had not paid much attention to my flushes if I am honest. Until 7 years ago I tanned easily and never burned, but since I have been ill I thought I was simply burning. The rash is hot, tingly and a bit itchy. Kind of like hives. I suspect this was the first butterfly rash that has been spotted by a medic. I have tried taking photos but they aren't showing well either! Does this description fit with a malar rash. Interestingly I have felt like I am starting a SLE flare with increased hand joint and jaw joint pain, fatigue and nausea, and my INR has fallen drastically in the last week.
I notice that a week before my period my symptoms are worse.
I'm no expert in Malar rashes at all. I've been Ill for quite awhile but just been through a rough 2 years - not suffered any malar rashes before except maybe once a long while ago when I sprained my spine! The next morning I woke up with a sore mask across my face felt raw and itchy. This one is more like a flush, that's red and hot with lines from nose across cheekbones - in going to show rheumy photos anyway as seeing her in 3rd of April - trouble is there's such big gaps between appointments you have no1 to ask inbetween - that's why I find this site so useful. I have definitely had it with an increase in symptoms ie joint pain, fatigue and sores - I too suffer every month - I feel like I've been hit by a bus and have to sit things out or heaven help me!! I'm still finding a balance with it all. I have a way to go yet as still waiting to see a neurologist at st Thomas - everything is so slow going that I think I'm going to ask to see professor Hughes privately!! Sending well wishes - thk you for taking the time to reply
Thank you for your reply, I'm still in no-mans land at the moment - I think!! Still beating the path for definitive diagnosis. The first time I had what a rash across my face I sprained my spine - I woke up the next day with a very sore mask that felt like I'd grazed my face across a footpath and it did itch a bit and flake, my osteo said it was shock from putting my spine out. I've had years of problems with my back and spine and pain and other problems. About 2 years ago it all changed I was constantly ill, joint pain, ulcers, hairloss, bakers cysts, livedo reticularis and had patches in peripheral vision both eyes - no malar rashes though! I'm doubting it - which is why I asked really as it came out with the fatigue, joint pain - this didn't itch but cheeks a bit tingly and burning hot seemed to come up in the evening but had for 3-4 days so I don't know if this constitutes a malar rash as would it come and go this quickly? I have no idea - like I say I'm usually so pale my husband noticed it. Feeling a bit sad as I just bumped into a school friend who has lupus and scleroderma, she's very poorly and has a family - it's made me feel a bit blue as her illness is quite advanced. Thank you once again for yr reply - I really appreciate it.
I really feel for you being in diagnosis no mans land as I am too and it's hard to know what symptoms might be significant or not! You just tell your Rheumy everything on the 3 rd and you should get somewhere with your symptoms! I'm sorry about your spine, must be very painful and disabling?. Are you having help for it?. I can recommend a Pain Clinic, go to one myself for a back and leg problem and it's so helpful. Good luck and let us know how you get on.X
Hmm sero neg connective tissue disease is what I'm labelled at the moment which is as good as 'no mans land' extremely hard when symptoms can be are so debilitating. Spine is not too bad now as been seeing osteo for 6 years who has put me back together after birth of my last daughter - so that's a positive!! I have done all the pain management and cognitive therapy courses in the past, and yes I did find them helpful, thank you for the thought though. We just got to keep on keeping on I guess - you take care Misty, thanks for your replies. Xx
Interesting label you have in sero- negative connective tissue disease. Mine is Undifferentiated Connective Tissue Disease, wonder how doctors have come up with these different labels to mean the same thing ie not sure yet! I mentioned the Pain Clinic because I wondered about a steroid injection for you, I've had great help from them. Glad you've had good help from an osteopath, I'm thinking about going to one. I hope your appointment on the 3 rd goes well and your nearer a clearer diagnosis. You should be with your symptoms. X
Yes I asked private rheumy about the terms used - I said to him surely that means I have UCT disease - he kinda said there the same thing. But some stay undifferentiated and others go onto full blown connective tissue disease - I also got that I'm 'lupus like'
It's bizarre isn't it because I've suffered for years with one thing or another and when I had spine problems the drs didn't offer any help cept amyiltriptalene/dihydracodiene - and finally the pain clinic - I had to beg for a scan, scan showed cervical spondylosis and lumbar disc bulging. But I was crippled and couldn't walk well - after the birth of my last daughter nearly 7 years ago I fell apart - the proverbial straw... Symphis pubic dysfunction, sprained spine after she was born - so had to find an obstetric osteopath - to put My pelvis back together - my osteo has been my life saver I owe him a debt of gratitude - because no one had taken any interest when I was asking for help I was just a mess and it had a knock on effect, nothing was in the right place, twisted spine, pelvis separated, hips in wrong place, ribs,shoulders even my foot arch had collapsed!! He's put me back together and it's taken 6 years - gotten me straight then boom - he says yr presenting like an auto immune illness, I still have probs with my hips and back I'm just think the autoimmune may of been underlying longer as I still seemed to have flares but not like now, I've been I'll since I was 19 but it stepped up a gear recently. I can't tell u how valuable my osteo has been (osteo not chiro) however now I have to be careful as sometimes a manipulation can cause me to flare slightly. Don't let it put you off as there isn't anything my osteo can't see by looking at me - it's one of the best things I have ever done - I say go definitely for osteo as I found chiro's rubbish and no joy with pysios. When I got really ill and went into hosi - Ed went through all the neurology with me and got all his books out - to explain what was happening - if you do go make sure you tell them about autoimmune - here if you need to chat anytime it's good to speak to another UDCTD!! Xxx best wishes Jo
That's so interesting and helpful what your private Rheumy said about diagnosis. I've been UCTD for 25 years ,started when I was 14 so we are very similar and I've been told recently I'm Lupus-like. My newish Rheumy is keeping an open mind , it's hard sometimes to keep understanding this as I'm sure like you , we need a good explanation for our suffering!
You have so gone thru it after your daughter's birth, that's also the time these illnesses can flare! Thanks for the good advice about going to an osteopath or chiro, thank goodness they were able to transform you, must have been hard to bond with your daughter too?. Good luck for the 3rd, hope you achieve a clearer diagnosis. It's great to talk to a fellow UCTD so feel free to send a private message if you want. HugsX
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