Lupus, Crohn's disease & Sjögren's syndrome

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New Member

Date Joined Apr 2017
Total Posts : 1
   Posted 4/3/2017 5:50 AM (GMT -6)   
Hi! I've lupus, CD & SS. My dr gave me humira, remicade, belimumab, methotrexate, probiotic, methyl prednisolone, fish oil, vit. D, Nexium. But I'm still pain. I've red rashes on my skin, joint pain in my knees, severe fatigue that make me fall when I walk, severe insomnia, hematemesis, strong headache and heavy dizzy, brain fog, tinnitus, severe abdominal pain and spinal, big size of ephitelial cells in my urine, light fever, dry eyes, tooth decay.
Is there anyone who has same symptoms with me? If you take humira, belimumab, remicade & methyl prednisolone, how many dosage? Thanks

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 4/3/2017 8:57 PM (GMT -6)   
Welcome to our forum Kate24. I am so sorry to hear that you are so ill. I can't think of anyone who has taken all of your infusion meds. I took Benlysta for two years and just stopped two months ago because I became chronically ill from infections. I took it once a month. I'm currently on a prednisone taper for a Lupus flare. Payback for stopping Benlysta.

I do think that your tooth decay is from SS. It's extremely important that you brush your teeth often, floss daily, and use mouthwash without alcohol. I use ACT mouthwash, Biotene toothpaste, and Biotene oral jel at night when needed.

I hope someone else will respond to your post. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry
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