My husband passed 3 years ago at the age of 48. I recently began dating again after being alone for so long. Now my GP thinks I may have lupus. I have red, scaly like sores on my forehead that are very embarrassing.  Any advice? I won't see a rheumatologist until next month. Any advice is greatly a ..read more

About 3 years ago, I had a period of time where I had difficulties in breathing, rashes on my scalp (hair loss)that were itchy and inflamed with painful lymph nodes at the back of my upper neck. I constantly felt weak and tired. I also felt my nose bridge was closing up as if I had a sinus congestion. Another period of time, I had occasional seizures in my sleep. All these symptoms felt unusual. I went to the doctors, they would do some bloodwork but nothing came up. I was prescribed antibiotics and pain killers. All of these symptoms did go away over time. Fast forward, 3 years later... I'm h ..read more

Hi, I am 56 and have had mild lupus for many years with positive ANA and mainly joint pain and myalgia and fatigue.  I was also diagnosed with Interstitial Cystitis with ulcers in my mid-twenties which I manage pretty well.  My labs are usually all good except for the occasional UTI and a bout of kidney stones.  My last labs came back with low glucose (non-fasting) 61 with normal range of 65-139, high creatinine 1.10 with normal range of 0.5-1.03, and low eGFR 59 with normal range of >/= 60.  My urinalysis was normal except for appearance which was cloudy.  BUN is n ..read more

I was recently diagnosed with subacute cutaneous lupus effecting my hair follicles (without lesions or scaling).  The back of my head above my neck was completely bald and several bald patches throughout.  The back of my head is being treated with steroid injections which are working, and the spots with a steroid cream. I feel like my hair is getting thinner and new bald spots appear as soon as the others go away.  I was told by my doctors this would or could happen.  Has anyone else had this?  If so, how are you treating it?  I am on a gluten free vegan diet.&nbs ..read more

Hello,  I am in Germany getting treated from lupus but going back to America and I need to get insurance that would cover the benlysta.  If anyone can help please ..read more

Hi everyone,  I’m worried about taking this new medication Imuran and side effects, Has anyone taken this medication?  please share. Thanks  ..read more

Hello, I’m a new member. I am excited to be part of this new safe space ..read more

Let me start by saying autoimmune disease runs in my family. MS, RA, Lupus.... Years ago I had a positive speckled ANA and was told that it was a false positive and that they would not rerun the test. I was in the military BTW. The VA hospital reran the test in 2021 and it came back positive homogenous with a titer 1:160.  I guess my question is if I should contact a specialist or wait and see what happens? My brother is very ill at this time. He has both lupus and RA that went untreated for many years. I don't want to get that far gone before I get help ..read more

Hi there, I am currently studying the relationship between vitamin D and the immune system, specifically in relation to SLE patients. Despite my research, I have found limited information on the exact reasons why sun exposure may be harmful to those with SLE. I am particularly interested in learning about the duration of sun exposure that is considered harmful, as well as the biological mechanisms that occur within our cells during exposure to UVA and UVB radiation. How much is too much time for an SLE patient? And even, could moderate sun exposure maybe reduce the likelihood of flare-ups by i ..read more

Hello!  My name is Tiago from Brazil ??  Something people in this forum know the treatment with high doses with vitamin D?  ..read more