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New Member

Date Joined Jun 2008
Total Posts : 18
   Posted 6/12/2008 9:01 PM (GMT -6)   
Hello everyone. New to the board. Have had a ton of ongoing symptoms and Im getting more and more nervous as the first rheumatologist appointment gets closer. I already have a congential heart defect and have had multiple heart surgeries, so the thought of having lupus is just thrilling me as you can imagine.

Alot of symptoms have seemed to have presented in the last 3 weeks, but now that lupus was mentioned today after my 3rd ER visit in 2 weeks, its all coming together, and I realize Ive had a lot of symptoms for awhile....months. Here are some symptoms... classic butterfly rash- looking back Ive had it for a long time and never thought anything of it, but about 3 weeks ago its started to hurt and itch horribly. Eyelid rash and major swelling- to the point when it first came on my husband jumped back when he opened his eyes in the morning. It TERRIBLE when I first wake up, but once I am upright, the swelling goes down but red rash remains. Small, non painful nodules right under my earlobes that seem to come and go. Headache, intermittent blurry vision, joiunt pain/swelling, fatigue. Insonia and trouble staying asleep. The "itchies" when I would lay down in bed for the night. All of a sudden, severe photosensitivity. Reflux/vomiting with certain foods that have never been an issue in the past. Dry mouth and intense thirst at times. Patchy, itchy dry rash on neck. Rash on upper arms. Allergic reaction to bactrim. Decreased sex drive (and Im a newlywed!!!)

Ive had all kinds of scans, bloodwork, seen ENT docs, ID docs, my cardiologists, been on 5 different antibiotics, and a methylpred pack which was the ONLY thing that got rid of the eyelid swelling/butterfly rash. That pack ended last Thursday, and then I woke this morning with it back in action. Yesterday at work I had the chills, was really tired and just didn't seem "myself" and knew something was coming on again. I went to the ER and prescribed another pack.

Sorry Im rambling, Im just frustrated, and scared, and stumbled on this board on google. Does any of this sound like what you went through when diagnosed?? Thanks :-)

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 6/12/2008 9:31 PM (GMT -6)   
Hello RN4kids..Welcome to the forum!! You are going through so much there are alot of nice people on this forum. Well that's good that you have an app. with a Rhumy that is who you want to see if you have lupus. I also have the rash and somach problems once you are on the right meds hopefully you will get some relief. Take care!! Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 6/12/2008 10:36 PM (GMT -6)   
Hi RN!!

Welcome to the forum. It sure sounds like a probably lupus (or some autoimmune disease). Do you have sore joints too??

It sounds like you also have Sjogrens Syndrome too (dry mouth, eyes and the swelling under your ear lobes). In case you've never heard of it . . . its pronounced "show-grins". Make sure you mention all these symptoms to your rheumy. And you'll need to be very intentional about caring for your teeth and seeing your dentist often so you don't have problems with your teeth too. (the lack of quality and volume of saliva is really hard on the teeth).

There is some good info for new members in "Lupus Resources" . . . link at the end of my signature. Also in that link is info on preparing for your rheumy appointment.

I hope you'll keep us posted!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 6/13/2008 5:44 AM (GMT -6)   
Greetings RN! So sorry to hear of all of the symptoms you are dealing with. I can certainly relate to the symptoms you describe. My start with lupus and eventual diagnosis sounds very similar. The pred. pack you are taking will help. The rhuemy will, most likely, put you on a a regular dose. Prednisone is a tricky drug, however, becuase the side effects are not so great. The problem is that it really helps with the inflammation. My rhuemy has me prednisone for periods of time when my other scripts need time to really work. Like, when I first started treatment she gave me plaquenil and prednisone. Plaquenil is great but it takes 3-8 months to build up in your body and to actually help.

Rosie has some great links in her signature line. It is helpful to read through them to aquaint yourself with the basics.

Good luck and my thoughts and prayers are with you!

Audrey Ann
Lupus and RA and LOTS of Medications!


Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/14/2008 8:23 AM (GMT -6)   
Hi RN and welcome. I don't have a lot to add to what the others said. I hope you get some answers soon though. I know how frustrating it can be to wait and also to know that something is wrong but to not have a name for it yet.

I hope you'll keep us updated on what you find out.

Take care and I'm glad you found us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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