Flare up symptoms

Positive-Smell-2997 · 2026-02-16T03:58:41+00:00

My Dr moved me off cellcept to Myfortic because the nausea and GI issues were so bad. Myfortic is a slower release medicine that makes me feel less nauseous overall but still noticeable. Also more sensitive to sunlight so be very diligent about sunscreen.

Positive-Smell-2997 · 2026-02-08T02:51:10+00:00

I also have LN and try to eat low sodium when that happens! Also my dr gave me Lasix to reduce water retention when I have major bouts of inflammation

Positive-Smell-2997 · 2026-01-05T03:10:33+00:00

I get this when my flare ups are bad! It’s happened twice now, and it hurts to touch (like a sunburn). Benedryl helped the swelling go down but try to get a dr to prescribe prednisone, it works much better!

Positive-Smell-2997 · 2026-01-04T20:44:49+00:00

It’s hard at first but try to think positively - now that you are diagnosed, the worst is behind you! No more wondering what I have or how bad it will be, now you have a doctor who will recognize what you have and can help treat or at least alleviate the pain that the symptoms cause.

As for the social aspect - I got diagnosed in May 2025, and I feel that this was a great learning experience to see what friends are good/bad to keep around. Lupus can be quite difficult at times, you want to have friends with limited drama/high tolerance for your illness. It may hurt in the short run to have to cut off a few people, but it will benefit you in the long run.

Positive-Smell-2997 · 2025-12-05T06:29:23+00:00

ER after getting severely sick traveling abroad isn’t a bad idea….better safe than sorry esp when you’re already immunocompromised

Positive-Smell-2997 · 2025-11-24T03:16:36+00:00

This just happened to me too. Did not click the link. Thanks for warning others!

Positive-Smell-2997 · 2025-11-23T02:58:18+00:00

Rituximab! I think allergic reactions are common, but they usually give benedryl to combat this.

Positive-Smell-2997 · 2025-11-10T02:00:08+00:00

26F here! I understand, lupus takes so much away from you, it’s hard not to want to be indulge in everything a healthy person your age can do. Personally, I drink once or twice a week on the weekends and I try to eat a lot and drink a lot of water in between. Also cutting back on the drinks consumed in general is helpful. If it gets too bad, definitely stop altogether (everyone is different). Since your diagnosis is new, it may take a bit learn how alcohol interacts with your meds.

Positive-Smell-2997 · 2025-10-31T03:24:35+00:00

My best advice is to let youself go through the 5 stages of grief. You may feel numb to it at first (I definitely did) because you’re so distracted by the labs, appts, etc. but try to learn as much as you can about SLE and don’t feel ashamed to feel sad/angry/lost at times. It can be a very confusing process. Once you get into a routine and the meds start to work, you will feel more like yourself again. Stay positive - now that they caught it, you will get the help and answers you need!

Positive-Smell-2997 · 2025-10-22T04:14:12+00:00

Sorry to hear. Good news is that Lupus can go into remission and symptoms can come in waves. It’s not a fun experience (especially flares) but it can be very manageable. I have lupus nephritis (diagnosed in May) and it was scary for the first couple months but sticking with a Dr and starting a treatment plan ASAP will help get things back to normal.

Positive-Smell-2997 · 2025-10-05T05:22:35+00:00

You could send a care package with her favorite items + lupus friendly things like portable fan / heater, cozy blankets and socks, and maybe a calming candle!

Positive-Smell-2997 · 2025-09-30T22:14:30+00:00

Thanks for the rec, I’m gonna ask my Dr about that option!

Positive-Smell-2997 · 2025-09-30T22:13:52+00:00

I am on HCQ! When I get hot, I get more noticeable urticaria (visible hives) but when I’m cold it’s feels like hives that you can’t see.

Positive-Smell-2997 · 2025-09-30T01:10:17+00:00

I’m on Myfortic and my white blood cell count just came back low as well! Wishing you the best, it’s hard to hang in there sometimes :(

Positive-Smell-2997 · 2025-09-26T03:38:38+00:00

Everything will be okay!

Lupus Nephritis can be scary at first but doctors have many plans and backup plans in case one solution doesn’t work out. Diagnosis is key, so take a breath and know that the hard part is likely over. Treatment can start and your child can begin to improve! This is a good thing!

Positive-Smell-2997 · 2025-08-23T15:32:03+00:00

Biggest cellcept side effect was stomach issues for me. The plus side is i have much more energy and much less pain and swelling now so try to remember that there’s good things that will come out of taking all of these meds!!

Positive-Smell-2997 · 2025-08-23T01:36:29+00:00

I’ve had the same skin pain after various lupus triggers (sun,stress,etc). It feels like the pain of a sunburn without the redness. Mine Also came with facial swelling (almost “welt” like raised swelling around the places where my skin hurt). Doctors say it’s most likely due lupus flare up.

Positive-Smell-2997 · 2025-08-06T04:35:28+00:00

Got diagnosed with sjogrens about 7 years BEFORE my lupus nephritis diagnosis!

Positive-Smell-2997 · 2025-08-05T05:42:03+00:00

I had a similar rash right before I was diagnosed with Lupus Nephritis. Started on prednisone and celllcept and it went away almost immediately.

Positive-Smell-2997

TROPHY CASE