Hi, thanks for your response ❤️ what I’m having is apparently common with lupus and my rheumatologist is having me take 20 mg of prednisone for a couple weeks and then going to 10 for about another week and then five for a week. I find it confusing to understand that if I’m on an infusion and hydroxychloroquine how this is happening as it is as a sign my body is rebelling and fighting. Reading the latest newsletter on this website regarding mouth and no source says that up to 40% of people with lupus have this issue going on. Kind of discouraging I must admit.

The headaches that I get when I get light headed just go away in a short while most of the time. If they hang on for a while I will usually take some tylenol

Cpogg, did they check for possible herpes simplex 1, which causes cold sores/blisters? A patchy white tongue may be geographic tongue, linked to allergies, but the blisters sound suspicious for herpes. I get tongue shallow ulcers due to lupus and a burning mouth due to dry mouth and lupus, and these are fairly common, but the blisters are unusual, I think.

My tongue is killing me right now. All of what you say is what's happening. Last week I had acupuncture done and the guy always looks at my tongue. I had a crevice in the middle like the Grand Canyon, today the Grand Canyon is closed and my tongue looks semi normal but is white and extremely sore with bumps on it.

Thank you Mistletoe, I get light headed a lot..... not spinning like vertigo but just light headed like before you faint and then I get a throbbing in my head and at the base of my neck. When I have a bad one, I will get auras of glittery twinkling circular lights in my eyes. Migraines have been ruled out as has everything else. Every known test has been done to try and determine the cause but nothing is clear. I've had that going on along with the tongue issue, bitter taste in my mouth and unstable blood pressure that's been hard to stabilize at times. this all started 2 1/2 years ago when I got very tired and super achy with a high temperature along with the typical facial rash you see in lupus.. Bloodwork showed a high CRP and SED rate and I was positive for Rheumatoid arthritis. This is after 12 years of having weird symptoms off and on through the years but never being diagnosed properly until June of 2021. I have had previous positive ANA tests as well as negative. My rheumatologist says people with lupus can test positive for RA as well and there may be a combo lupus, RA condition.