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Old 09-23-2009, 03:31 AM   #1
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Red face oh my poor face!

I was diagnosed with lupus in Jan this year with 10yrs of aches and pains behind me. These have settled down with Planquenil but over the past 2 months my face (mostly cheeks & chin) have become very red,sore,painfull, itchy, & covered in puss spots. to put it plainly as I described it to my GP, I look like the top of a pizza!! Is there anyone else who is experiencing this? If so any advice. My GP justs gives me different creams/ointments and just says " oh you poor woman!" I have looked up Lupus Valgaris on the web and am now paranoid thats what I have. Thanks.

 
Old 09-23-2009, 07:31 PM   #2
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heidiclouser HB User
Re: oh my poor face!

jej...welcome. I have lots of skin issues but nothing like you have. Plaquenil helps my rashes but my extreme rashes are only helped by a high dose of prednisone. Cortisone cream thins the skin so use it sparingly.

 
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Old 09-24-2009, 07:15 AM   #3
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Re: oh my poor face!

Hi. Have you discussed your facial outbreak with whomever prescribed you the Plaquenil---meaning rheumatologist, dermatologist, or GP? I *think* some people can get skin reactions from the med itself, more often with generic formulations vs. the name-brand. Dr. Wallace discusses this in his hardcover. He says that when a patient DOES have a skin reaction, the drug has to be discontinued.

BUT---if this were a drug reaction, does it make sense that ONLY your face would erupt? (Hmmmm...) In your shoes, I'd ask my drs. questions like that, to make them assess the likelihood of this reaction being caused by the med.

Also, did you ever have skin eruptions of any kind before being Dx'ed? Do you know what "discoid" lesions look like? Are you taking anything ELSE associated with facial outbreaks? Have you guarded against UV exposure? (Many people with lupus are extremely photosensitive. I am, but almost all of my rashes were non-scarring on torso/arms, with only one scarring lesion on my face.)

I think you need a really good dermie to weigh in!

I really hope you can press your drs. to take this much more seriously, not just say YOU POOR WOMAN. (You must have wanted to slap that dr., huh? ) Let us know how you're doing, OK? Best wishes, Vee

 
Old 09-26-2009, 03:11 AM   #4
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Re: oh my poor face!

Jej,

I feel for you girl...I'm there. I have so many different types of lupus rashes all over my body that my dermy from a major teaching hospital in Boston brings students from around the world to view my naked body! That said...The rash you are describing is exactly like the one on my face with my nose effected as well. Sometimes my chin hurts so much I want to cry. My face can be barely touched. Every pore on my face in the rash area is filled with tiny puss sacks. Sorry for the description. Sometimes the "blow up like cysts and hurt real bad until they finally brake on their own. ( disgusting) Accompanying this out brake are disc shaped black spots that I have learned will never go away. The rash on my face is different from the others on my body the face rash is discoid. The treatment for this rash is to stay completely out of the sun and to wear sunscreen that is over 50 spf. And apply it 2-3x per day. (even though you are not in the sun as artificial light also effects it) It is also important to wear a hat at all times. Plaquinil is a good treatment for this as well as topical steroids. The topicals are very harsh on the skin so caution must be taken in how and when it is applied. I was never a make-up maven but today if I put it on I use Bare Minerals with the topicals and sunscreen and drying time inbetween it can take me 3 hours to cover my face.
The most important thing you can do is find a dermy that specializes in Lupus. The average dermy doesn't know what this looks like and can miss diagnose you and give you a harsh alcohol based meds. That happened to me and it burned my face beyond compare so PLEASE be careful. If you find you have this and have questions about dealing with it from a patients perspective please feel free to email me or post a note. I'm here for you

 
Old 09-26-2009, 04:23 PM   #5
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Re: oh my poor face!

I'm glad to know I'm not the only one who is paraded before medical students to see my rash. And my rheumy tells them it is unlikely they will ever see it but just in case..... LOL

 
Old 09-27-2009, 01:33 AM   #6
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Re: oh my poor face!

Holy Crap! that is what my dermy says to them ...and I always thought it was crap! I would like to know just how rare discoid is. Because there is a lot of info on it and it seems like a good amout of us here have it....lets take a count...I'm 1

 
Old 09-27-2009, 05:43 PM   #7
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Re: oh my poor face!

I have subaccute cutaneous lupus rash with depigmentation

 
Old 10-06-2009, 05:55 PM   #8
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Re: oh my poor face!

i was given plaquenil as well for my "lichen plantus aniticus" i started having really bad headaches and my eyes started swelling really bad the md told me to continue to take it b/c it would be good for me but i stopped my entire face became puffy i was told that was a rare thing to occur but b careful meds affect everyone different make sure u make them aware of ur concerns don't b blown off we surf and we read stuff knowledge is power but the mind is a powerful thing don't stress that is the last thing you need

 
Old 10-07-2009, 01:29 AM   #9
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Re: oh my poor face!

I had the annular (targetlike) subacute cutaneous rash, no scarring or depigmentation. But I also got one big discoid (scarring) on my face & was told that "rashes may cross subsets", meaning some percent of us get more than one type of lupus rash. Vee

 
Old 10-08-2009, 04:22 AM   #10
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Re: oh my poor face!

That's interesting Vee.

I am being put on rituxum infusion because of my face rash. It has gotten so bad and none of the other meds have worked. And because it is discoid they are afraid the scaring will be a lot. I'm nervous about it because I do have allergies.
I guess discoid is rare since no one counted with me

 
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