The Lupus Forum banner
1 - 3 of 3 Posts

·
Registered
Joined
·
206 Posts
Discussion Starter · #1 ·
hi,
i seem to be getting more photosensitive and my face and neck are hideous. now i'm getting a lot of swelling especially when i have the rash around my eyes. they swell so bad you can't see my eyelashes and are almost swollen shut.

is this amount of swelling normal? i've tried the creams the gave me elidel and i forget the name of the other, it was an ointment, but it just made my face really hot. neither helps when the rash gets going. the eildel only helps some of the scales come off if it's not too bad.
are there any other options? i'm on plaquenil 400 mg a day and really hope i don't need to go on prednisone.

the last time my face got really bad it was for 9 months and this time my neck is just as bad and i can't walk around like this for 9 months again.

people keeps asking me if i've been punched and it hurts like crazy!
any advice would be appreciated
thanks
lesley
 

·
Registered
Joined
·
521 Posts
Hi Lesley,

When i get swollen like that in the face people make fun of me as well, and i have big eyes so it really looks terrible. I look like a frog. I have also been experiencing swelling in my fingers, wrist, knees and ankles all due to the sun.

I finally realized, that even when i'm in the house i need that sunblock,, since my curtains are very thin to none in some areas i get the rays from the sun while indoors. So now after bathing i put a coating of sunblock on my entire body including my face. Coppertone spf 70 continuous spray makes it easy to apply. On my face i use oil free sunblock (coppertone). Then right before i go out (if i dare to go out) I place another coat on the limbs that are visible and again on my face. Then every hour after that if i'm am still exposed to the sun, per recommended by my dermatologist.

For the swelling i take a capsule each twice a day of dandelion and corn silk. They are both diuretic herbs to help rid the swelling, which for me is water retention. Its gone in a day or two after taking the herbs.

I hope my information was helpful,, Stay healthy!!
 

·
Registered
Joined
·
4,583 Posts
Hi Lesley, I feel so awful sorry for the situation that you are in. I does sound so very painful. I tell everyone that they need : 1-a good Rheumatologist, 2- a good Dermatologist (skin ), and 3- a good Hematologist (bloods )
Also remember that the sun is your enemy, and even the least little bit will do it's best to hurt you. I would suggest that right now you call your GP and ask for a referral to be
seen by a Dermatologist. When you get the secretary to answer, ask her for the earliest possible appointment, and
you can tell her why. Please hurry and get that help, you
need to stop that pain and any scaring. I wish you the best of outcomes, and let us know.:wink2:
 
1 - 3 of 3 Posts
Top