Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Malar, or butterfly, rash? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1376429403 Message started by larken on 08/13/13 at 10:30:03

Title: Malar, or butterfly, rash?
Post by larken on 08/13/13 at 10:30:03

Hello All,

I currently have a rash that is a malar, or butterfly, rash across the bridge of my nose and cheeks. It is flat, but sometimes peels a bit, and gets worse in the sun. This is a recent symptom.

This is a classic symptom of lupus, but I really don't think I have lupus (not many of the other symptoms).

Does anyone else experience this as a symptom of a mast cell disorder?

Thanks,
Larken

Title: Re: Malar, or butterfly, rash?
Post by Anaphylaxing on 08/13/13 at 10:35:28

I get in when reacting. Goes away when I'm stable.

SLE needs to be excluded as a cause.

Title: Re: Malar, or butterfly, rash?
Post by Lisa on 08/15/13 at 10:29:55

Masto does not typically give this kind of rash. This is Lupus. There are plenty of masto patients who have comorbid Lupus. Ana is correct, this needs to be fully investigated because when we compare the two diseases, it's Lupus which poses more of a threat especially if it isn't kept well under control.

Lisa

Title: Re: Malar, or butterfly, rash?
Post by Starflower on 08/15/13 at 13:41:49

MCAD can definitely co-exist with lupus... and it's important to check it out since lupus can be so damaging. It might also give you additional treatment possibilities like this:

http://www.hss.edu/conditions_benlysta-fda-approved-for-lupus.asp

(secondary MCAD can get better if you treat the underlying disorder)

Good luck! Although a lot more doctors know about lupus than MCAD, it's still not easy to get a diagnosis.

Heather

Title: Re: Malar, or butterfly, rash?
Post by larken on 08/19/13 at 09:57:36

Thanks for your replies, everyone. Anaphylaxing, it was useful to hear that you experience this as part of your mast cell disease.

As everyone has recommended, I agree that I should probably get tested for Lupus, if only to rule it out.

I have asked my mast cell specialist via email to let me know if he thinks I should be tested, so we'll see what he says.

In the mean time, if anyone else has this rash as a symptom of mast cell disease, I would be interested in hearing about it. Or, if you have Lupus and MCAD, please share your story. Thanks!

Title: Re: Malar, or butterfly, rash?
Post by larken on 10/27/13 at 20:35:58

An update: I did get tested for ANA, which is the most reliable test for SME (systemic lupus). Thankfully, it came back negative. Though, since false results are common, I will continue to monitor symptoms.

I am still having the butterfly rash, but less now that summer is over and the sun isn't as strong.

Title: Re: Malar, or butterfly, rash?
Post by Anaphylaxing on 10/28/13 at 20:01:40

Glad to hear it Larken. My ANA is weakly positive and we are still ignoring it.

My malar rash shows up anytime I'm exposed/triggering and one of my triggers is sun and heat so that would make me way worse too. I bring ice packs when it's hot to put on my face. My face gets red for other reasons but I know it's a reaction when it crosses the bridge of my nose.

Title: Re: Malar, or butterfly, rash?
Post by larken on 10/29/13 at 20:44:25

Thanks, Ana. It helps to hear your experience and how you approach it.