Hello all. I am not diagnosed for have been generally unwell with fatigue/joint problems for some years. In August 2021 I became very ill with fever, rash, joint pain, and double pneumonia. I had been briefly bitten by a tick 2 weeks before but no bullseye rash. Doctors said my case was unusual and I has anti bodies for Lymes and EBV but not believed to be a current infection. They concluded it was likely Ehrlichiosis.
However since then, every 8-12 weeks I become ill, extreme fatigue and muscle weakness, fever, and the same rash across my chest which lasts approx 3 days.
In general I struggle sleeping at night due to pain elbows and burning knee pain, and pretty sure I have Raynauds. I’ve been from pillar to post but recently had a positive ANA test and pretty sure after a couple of recent sunbeds I have a malar rash across my face. So I am now wondering if it’s lupus and the tick bite was a red herring.
The rash on my chest is a mystery though and makes me feel less like I’m imagining everything. Has anyone had anything similar to this rash?
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Alisha6653
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Hi Alisha6653, I have a fairly similar rash when in glare, I have SLE Lupus. Though my rash is on my neck and top of my chest. Hope this small bit if info helps.
Alisha - Infections can also set lupus off on a predisposed person. So you could have had infection but are also now experiencing autoimmune symptoms.
That rash is pretty prominent. If you are having that during times of increased symptoms, it would seem possibly to be related. Did you doctor see the photo? If not, can you send it over?
I did have a less extensive rash on my stomach when I was first sick.
Please stay out of tanning beds. In case you have lupus you don’t want to cause a flare that affects your kidneys or something.
I’ve seen 4/5 different doctors who have all had different opinions from contact dermatitis, post infection syndrome to fibromyalgia. On a very bad flair it covers my torso up to my neck and ears. Not itchy and certainly not contact dermatitis. It’s frustrating as I feel so rough with it and they just seem to not really know and fob me off. Now I’ve had the positive ANA I’m hoping they will take it a bit more seriously.
My wife had a very similar rash which was one of the many indicators before she was diagnosed with Lupus SLE.
If you are ANA positive this means that you have too many antibodies and there are many different types of antibodies there is a second tier of tests that drill down to try to determine which of the many types of antibody you have too many of. Typically, for Lupus the Drs look specifically for dsDNA antibodies. In my wife's case she was found to be over 1000 when the upper level for "normal" is 75. She was very unwell.
If it is Lupus -- it is well known that too much exposure to sun can bring on rash and flares from exposure to Ultra Violet light. Even flourescent lights in your home can give off UV. Sunbeds are designed to simulate sunlight i.e. they are designed to emitt UV. So please, please stay well away from your sunbed!! Have a look at the NHS site re sunbeds.
hi, yes thank you for that information. At the moment the ANA result also states 1.320 with a speckled pattern? Is that what you are referring to regarding different results. I have to have some more tests done, the hospital have sent me the letter so I can go in when I’m free. I’m waiting to go during a flare up as at the moment every time I see someone it’s weeks after the rash has gone and I’m feeling well again. I’m still waiting to see a rheumatologist again. I saw one mid 2021 and at that point blood tests were normal. Then I was sent to infectious diseases and they did more blood work which gave the ANA result. If you have lupus. Will the ANA be positive always or only when you have a flair up?
You won't necessarily get a diagnosis of lupus with ANA alone as a percentage of the population have positive results without having lupus.you will need another positive result from DS-DNA or compliments bloods.speckled is the dye pattern under the microscope.mine is homogeneous.the pattern can be more prevalent in some illnesses.Bloods arnt always positive and can flit between positive and negative.its all very complex. You really must stay off the sun beds and out of the sun as uv will make joints etc worse so cover up head to toe in clothing,hat,factor 50 and sunglasses. Stress is a big trigger too so keep that to an absolute minimum.
Sorry for the late reply -- had computer problems -- could not get onto HealthUnlocked.
Firstly, I am most definitely not a medic. I have only picked up a few bits of information along the journey we have taken as my wife's illness developed to being diagnosed. I had to really, to at least allow me try to understand the Drs and enable me to ask appropriate questions.
I agree with Spanielmadlady's comments so no point in repeating them.
When your ANA is described as "speckled" it just allows our clever Drs to take a step nearer to understanding exactly what specific illness you have because only a small group of the many antibodies that exist look speckled under the microscope. Having said that even though they are just a little closer to a firm diagnosis it does become very complex as each antibody points to a particular illness they also are often found together in a single patient e.g. people who have SLE also often have Sjogren's , Raynaud's and/or RA, etc etc .( or any other combination)
I guess we are all different and the level of ANA can vary in some people. In my wife's case she has had a fairly high ANA throughout but her dsDNA has gradually reduced over the past two years and she is now not too far from the normal range.
A positive ANA test can point to many other disorders and other autoimmune diseases but the vast majority of people who have SLE are rarely ANA negative.
could be sun acute cutaneous lupus the bridge between discoid and systemic. Gp blood test for lupus and ESR MIGHT help dermatologist would be good avoid sun
Hi Alisha, I have that same rash every time I have a Lupus flare. Had the first one in 1985 but was not diagnosed with SLE until 1998! Didn't get any treatment apart from steroids when I was flaring until 2011 when I was finally referred to a rheumatologist who prescribed daily Hydroxychloroquine and steroids only when flaring. I also used to get blinding headaches, swollen glands, severe joint pain, overwhelming fatigue (couldn't get out of bed) but since starting Hydroxy the flares are few and far between and much less severe. I hope you get a diagnosis very soon.
thank you, that’s very helpful. I certainly know from how I feel a couple of days before that I’m heading downhill and the rash will appear. I just want to get to the bottom of it it now.
Yes, that's exactly how I feel - I get the headache that nothing will shift, a feeling of anxiety, then the rash appears. I used to get fever but the hydroxychloroquine has certainly helped with many of the other symptoms in my case. In between flares I'm fine - some days I run out of steam and have no energy - but I just have to pace myself. Google the Spoon Theory if you haven't heard of it. Wishing you all the best, and I'd love to hear how you get on.
PS Just read your earlier replies to other respondents - my rash also covers my torso up to my neck and ears, down to the top of my thighs. Not on my face. It looks exactly like yours in the photo.
Yes, Alisha, under the skin and it is not raised and not itchy. You wouldn't know it was there apart from how awful you start to feel before it manifests itself. Reading your reply to faerie feet, I identify with your comments about knowing it's coming and feeling flue-y. It starts with small patches then all the 'dots' join up to a big red mass. That's when I take a high dose of prednisolone for maybe 3 days and it starts to subside and the awful headache goes. I have a couple of photos of the start of my last episode but don't know how to post them on here!
Hi Alisha, How does the rash start? Is it with just one small area then spreads? I had a rash on my chest area (I am going back about 20 years ago) I spent 8 months going backwards & forwards to Doctors, everything they gave me made the rash worse. In the end i asked to be referred to a skin specialist. I got an appointment the next day, cost about £80. He said he thought it was Lupus. I had a skin biopsy which resulted in something called Jessner's lymphocytic infiltrate. Sort of part of the Lupus family but not as invasive. I have to wear sun block and never go on a sunbed. It slowly went of it's own accord. I did have it temporarily on my face. I had blood tests which showed positive for Lupus. However, I have been tested for it since and it comes back negative. I too still have moments of complete lethargy and cannot do anything, my joints hurt so much. When i saw the specialist he told me to not get stressed!. If you can i would pay for a private specialist to take a look. Hope you get it sorted soon
hi, yes it starts small and overnight spreads. It’s under the skin and not itchy. Although when it’s really bad i can feel it’s there. I usually feel fluey a few days before and know it’s coming. The rash lasts a few days but i feel really run Down for a few weeks after. I will def look at going private
My Mom would get this up to 6 times a year.She was never formely diagnosed but they went by me based on what I have-Behcet's disease. Although I never had a rash like that. She used to put hydrocortisone cream on it but it would keep spreading anyway. I wish I could help🥺
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