butterfly rash

Discussion in 'General Health & Wellness' started by trivas, Jun 23, 2004.

  1. trivas

    trivas New Member

    Does anyone know how to treat the butterfly rash on face? i started flaring about 3days ago and i'm desperate to have these treated. in the past nothing worked but there might be some home remedy out there.
  2. louojae

    louojae New Member

    My sister had the butterfly rash which also included muscle atrophy. There is a name for this although it is rare. I cant remember the name of the disease but I will find out it starts with derma- something. She will be on pregnisone rx for the rest of her life. She doesnt experience the rash anymore and has the muscle atrophy pretty much under control. Let me know if you need the name of it.
  3. trivas

    trivas New Member

    Thanx for your reply. I'm on prednisone and I guess its helping my butterfly rash. Its clearing up although its also drying up my skin. I'm just stressing over seeing a rhumy. I've been trying to schedule an appointment ever since April. I'm not being seen until September. Now in between this gap of time, i've been in bed, w/a rash, joints aching, hair falling... u name it! any advice?
  4. Nancy8

    Nancy8 New Member

    I have had the same symptoms for over 20 yrs. After quite a struggel finally they decided Lupus. If the prednisone works it's a good indicator for Lupus. For me, Lupus is easier to manage, less painful, and gets better often over time, than anything related to Fibro. Do research on the medication though, for while they help alot, they can be very deadly esp. long tem usage. i have done quite well with short term high dosage injectible forms of prednizone. Do you also get low grade fevers?? It ends up being all autoammuine, and Lupus can be a 'catch-all' diag. So don't worry about fitting all the boxes, just seek care. I slso suggest having your Compliments checked. any good doc. will knw this.
    Good luck!
  5. JLH

    JLH New Member

    and the butterfly rash. I really didn't know there was something to specifically treat the rash.

    I don't take prednizone only if I'm critical because of its many bad side effects.

    I also have fibro.

    I guess I can't help you either on a remedy to help clear up the rash.

    Is your rash due to lupus or Rosasha (? on sp.) -- it's the redness on your face that will sometimes cause your nose to enlarge--like W J Fields.
  6. joyfully

    joyfully New Member

    Re: The LONG wait until the Sept. appointment with a rheumy.

    Try this, it sometimes works. Go neatly dressed, but very little makeup and go to the Doctor's office early in the morning. Start with, "I really need your help." Tell them that you already have an appointment, but it isn't until September. That you are really scared that you have Lupus (show them the rash on your face). Tell them your joints really hurt (if that is what you are calling a flare. Then ask, "Is there any possible way that I can get in earlier?" Tell them that you are willing to set there every day in case that someone doesn't show up for their appointment.

    Have you already had your records, Xray results, and lab results sent to this Rheumatologist?

    Ask if you can be on a list in case someone calls in to cancel an appointment in case the first suggestion doesn't work. Also, get a copy of the forms that you have to fill out as a new patient so you will already have this paperwork done in case of an earlier opening.
  7. trivas

    trivas New Member

    okay, its been 2weeks since my Lupus has been acting up. I'm still waiting to be seen by a rhuemy and its not going to happen until September! This morning I couldn't get up to go to school (8am). my hands were so swollen that my fingers got stiff and i couldn't move. I woke up with a stiff neck and my back just aching. I couldn't get up until around 9:30am and I had to go to work at 11am. but since i barely started work just last week, i can't afford to call in sick. I did my best to drive and last throughout the day at work. Then I've been having this head ache for 3days now. I cant seem to make myself feel stable! and I need all this energy for my 2yr old twins and my 3month old newborn! oh man, i feel like i'm falling into pieces and there's noone to help me up!!! to top it all, my butterfly rash came back yesterday... so i'm back looking like the hunch back of notre dam! !
  8. joyfully

    joyfully New Member

    If you can't get over to the Dr's office as I suggested, then try calling them and seeing if they will put you on a call list in case someone cancels an appt. Have them mail you the new patient forms so they will all be completed when you get there.

    Oh, I just thought of something else. If a Dr. referred you to the rheumy, I'd call at that Dr's. office and tell them your dilema. Ask if they would call the rheumy's office to see if they can get you in faster to see the rheumy.
    [This Message was Edited on 07/20/2004]
  9. Cyceri

    Cyceri New Member

    These symtoms sound like some of the symptoms for Celiac Disease. My mom has CD, and she had butterfly rash. She found out that Celiac causes it, along with fibro, IBS, chronic fatigue, and a ton of other symptoms and diseases.

    Celiac Disease is an genetic, autoimmune disorder in 1% of the population, and it's commonly misdiagnosed by doctors (so if you have it and you get into the doctor's, you won't get diagnosed anyway...). CD is caused by an intolerance to gluten, a protein in wheat, rye, and barley. There is a very effective treatment--the gluten-free diet--that usually relieves all symptoms. (However, it isn't recommended to begin the diet without a diagnosis.)

    You can get a diagnosis from your family doctor--you just have to be persistant in getting the test. The test to ask for is called tTG (tissue transglutaminase). The EMA (anti-endomysial antibody) is also good to get.

    There is a wide spectrum of symptoms and related diseases, and no website I know of that lists them all, but Celiac.com gives a pretty good overview. Also, I've posted several other more elaborate things on the CFS and FM message board.

    Hope this helps,
    ~Cyceri~
  10. stjoesphgang

    stjoesphgang New Member

    Trivas, Make sure you take plenty of time to rest. Having Lupus, I also at age 26 had a full time job and two small children to take care of. To make along story short, I eventually wound up in a nursing home because I just kept doing to much while in the middle of a Lupus flair. I know it's hard when you have two small children to care for but the price to pay for doing too much is not worth it. Maybe you could get a relative to help out with your children while feeling so bad. I hope by now you have seen your Doctor. Good Luck to you and Peace be with you.
    stjoesphgang