Is this a butterfly rash?: I've been feeling sick... - LUPUS UK

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Is this a butterfly rash?

Slbs98 profile image
11 Replies

I've been feeling sick on and off for awhile now, and recently started having extreme fatigue as well as pleuritic chest pain and lung inflammation, and whenever I feel like this the rash is most noticeable. I also break out in a similar rash on my legs and arms. I've tried every lotion under the sun for all of them and it just seems to sting and not do any good whatsoever. My doctor is in the loop about most of my symptoms, but I'm nervous about asking him to test for Lupus when it's so rare, even though I do have a family history of it. Should I just go for it and ask him to test me for it? Or am I just overreacting over nothing?

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Slbs98 profile image
Slbs98
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11 Replies
Slbs98 profile image
Slbs98

I guess I should also add that my doctor thought I had asthma because of the pleurisy and trouble breathing so he put me on inhalers, which just made things worse and gave me an upper respiratory infection. An urgent care doc prescribed me something called prednisone, and it's actually helping me a bit until it wears off after several hours (it's a small dose)

sprightylisa profile image
sprightylisa

I think you should be tested. My lupus was attacking my lungs and it almost killed me twice; first with pleural effusion that went septic (no doctor found the pleural effusion until I went septic) and then 8 months later I had double pneumonia and it wasn’t looking good. I read that Lupus is rare too but I don’t believe that anymore. I know 3 people who live around me have it and we are all Caucasian which makes getting it even rarer. I think there us something in the air I breath. Good luck. It takes a long time to get diagnosed with Lupus; I hope they give you the blood test.

Slbs98 profile image
Slbs98 in reply to sprightylisa

Thank you! It's been almost 2 years now with this stuff going on, and more than anything I just want to know what's wrong, even if that turns out to be Lupus. It's been so frustrating having doctors tell me "You're too young to be sick"

I'm really gonna push to get the blood test

1sam profile image
1sam in reply to Slbs98

Sorry to hear what you are experiencing... I think you need to press for a diagnosis, be your best friend! ... read about the disease (there is plenty of good information in this site), there are 11 criteria for diagnosing lupus, I suggest you to read about it and see if they are similar to what you feel.

If possible, keep a journal/dairy of your symptoms and show them to your Drs.

Age is not factor for being healthy or not :) and precisely is a good reason for you to keep pushing until someone tells you what you have.

Rheumatologists are the specialists for this disease and other very similar... I hope you can find a good one.

As I'm not a Dr I can't tell you what your rash is, but as a lupus patient I can tell you that it looks like my malar rashes and the other symptoms you describe are similar to my past experiences.

Wishing you well !

Samantha

eekt profile image
eekt

There's no lower age limit for lupus (some here from birth), it is part genetic, plus rash and pleurisy are two of the four criteria 1sam mentioned. ANA is the screening blood test (though not all SLE-ers are positive), if that's positive the lab does the dsDNA: if that's positive SLE is 'highly likely'...but there are other immunology tests, if those two are negative to meet the criteria...if you have signs and its in the family, as sprightylisa says press for testing and a Rheumy referral, be well xx

PS Prednisone is one of the treatments for lupus I think, a steriod

HazelW profile image
HazelW

It's not so much that Lupus is rare, simply that it is very hard to diagnose as it replicates so many other illnesses & also that not many people have heard of it. Stick to your guns - at worst your GP will get fed up with you & make more effort to give you a diagnosis one way or the other ! Good luck !

katidid profile image
katidid

You have nothing to lose by getting the blood work and imaging done. Then you’ll have all the info to discuss whether or not you meet the criteria. As for the picture, it’s hard to tell. Perhaps it’s the light or the angle but I can barely see it. I can see the bridge of nose to cheek trace, tho. Do you have a different pic? As for other areas of the body, a Malar rash is specific to the face. You prob have some other dermatitis going on that may or may not be related.

Hope this helps!

Slbs98 profile image
Slbs98 in reply to katidid

Actually the prednisone is clearing it up and lessening my symptoms overall these past couple of days, so that was the only pic I got of it. I've had anemia and pleurisy on and off this past year though which is strange

katidid profile image
katidid

Steriods always clear my rash/fatigue/pain up as well. But it’s temporary. If you notice that the rash gets worse or is triggered by UV light, heat or stress, def include that in your conversation with your doc. And as above, get the panel run. With your symptoms better safe than sorry. It’s a fast, painless process. The bloodwork is just like any other - only your doc checks a box for a Lupus panel to be run, along with a comprehensive. I’m assuming they’ll want X-rays if your lungs, but again not a big deal.

The important part is bringing all the information together so you and your doc can figure out next steps.

Good luck :)

Slbs98 profile image
Slbs98

Well my doctor ran the blood work to check for inflammatory markers in my blood, and they came back positive, so I have an appointment with a rheumatologist scheduled for next week. Thank you for all the support!

Wish me luck

Potteralltheway profile image
Potteralltheway in reply to Slbs98

Any updates on your diagnosis? Praying all is well.

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