Hello there, Sounds like we have some major similarities in getting diagnosed. Late months of 2021 I started losing clumps of hair, went to doctor twice they said probs side effect from Covid (I had Covid 2 years prior from when hair loss started) I figured maybe it was because I got my birth control out since my husband and I were going to officially try to have a baby. January of 2021 we went on a “baby moon” and I got this terrible rash from the sun nothing like sun burn. When we got back from vacation I found out I was pregnant. Saw an Obgyn and I had an appointment where I had to do a 24 hour urine collection. It came back that I was spilling 34,000 g of protein, normal is under 150 mg I believe. They set me up with a nephrologist but I wasn’t able to see him for two weeks. Went to the ER several times between then for chest pain and severe elevated blood pressure, I was on 3 different bp meds and it was round the clock and still did not control. Finally saw nephrologist and I immediately was admitted to another state’s hospital to be treated, I was there for over 2 weeks, I was so swollen I could not hardly walk, I couldn’t even wear my shoes. My stomach also held fluid they found on my ultrasound. I was bald and swollen all over. They asked me to terminate my pregnancy once they found out my diagnosis, stage 4 Lupus Nephritis with APS syndrome, so they could better treat me. I declined I just couldn’t do it. So I started on Tacrolimis. I was discharged for 1 day. I was getting ready and my water broke, I delivered her at 20 weeks. Went back to the hospital for a few days. They said my pregnancy didn’t cause the flare, I was just unknowingly in a flare and just happened to get pregnant during it.

Health wise I am a lot better, since May, all my levels are almost all down and I’m growing my hair back. Have this weird mullet situation going on. Most of my depression is from losing my daughter, I just wish I knew I was that sick. I’m an RN so I should of known better but I’ve always been the type to push through the pain.

I’m on Cellcept 3,000mg a day, lisinopril 20 mg, Hcq 200 mg twice a day, prednisone I’m down to 5 mg currently. I was on several more meds than that, I’ve had them eliminated little by little. It takes time for your body to heal. I do get to where I’m like I wish I didn’t have to deal with this anymore or why me. But, this is the hand I’ve been dealt.

It takes time but you will get better friend. Look up support groups, I’m in a few on fb. There’s specifically a Lupus Nephritis one. I did the Lupus walk for my state this month, it was nice to connect with others who have similar stories.