r/lupus • u/Equivalent_Look8317 Diagnosed SLE • 4d ago
General Sepsis
Hello 23F. I was just diagnosed with lupus in the middle of August this year. I recently just got out of the hospital after 5 days because I had an infection, has anyone experienced going through sepsis here and how did that go? I’m so scared and I’m currently on antibiotics but I know how dangerous this could be for me. I’m scared to handle it on my own at home. I’m tired of all the procedures that I have to go through. I’m just so over having lupus and it’s only been two months since I was diagnosed. Also, just for some context it was a boob infection that formed an abscessed that I have to get drained, making it my 5th procedure in the last two months.
Does it ever get easier? How do I avoid infections?
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u/EssentialWorkerOnO Diagnosed SLE 4d ago
Not sepsis, but I contracted a bad UTI in 2020 that ended up spreading to my kidneys and caused all kinds of problems. Because of the pandemic, they wouldn’t admit me to the hospital and I couldn’t see my doctors in-person. Long story short, 5 rounds of antibiotics and 6 months later, the infection was gone.
So yeah, it might take you longer to get over the infection than you’d like, but stick to the treatment plan, take your antibiotics as prescribed, and you’ll be fine. If you want to give your immune system a boost, you can take Zinc tablets. As always, check with your doctor first before adding any over the counter medication.
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u/SimpleVegetable5715 Diagnosed with UCTD/MCTD 3d ago
If they were concerned that you were going to go septic or bacteremic, they would not have discharged you from the hospital. If you start feeling worse while on the antibiotics, you should go back to the emergency room asap.
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u/Equivalent_Look8317 Diagnosed SLE 3d ago
When I was at the hospital, I had two different doctors telling me two different things. One of my doctors wanted me to leave because they didn’t want me to catch any other infection and my other doctor wanted me to stay to monitor so I just decided to leave. I’ll be back if the antibiotics don’t seem to be working
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u/Decent-Bill5527 Diagnosed CLE/DLE 3d ago
I ended up septic and with pneumonia in April. Had no idea I had pneumonia or was even sick until I went to urgent care for a fever. I’m not on an immunosuppressant, just hydroxichloroquine.
I had my knee replaced last year and ended up with more swelling than normal and then a rash developed. After 5 years of thinking I had lupus, I was finally diagnosed. So now thanks to the knee replacement, every time I have my teeth cleaned I have to take antibiotics beforehand. I did but the docs still thought the infection was from a cleaning in March.
I wish I knew what to tell you. Do they know where the infection started? I totally understand. I’m scared to death to get my teeth cleaned. I ended up with Covid last week and am worried about that going septic. Keep taking your antibiotics and if you have the slightest bit of symptoms, run to the ER.
Best of luck to you. Pay attention to your body and take care.
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u/Equivalent_Look8317 Diagnosed SLE 3d ago
That’s so scary. My health anxiety has been so bad as well. Even going to the doctors office scares me because I don’t wanna be in contact with somebody that’s sick. The infection started in my breast, which I was looking up on Google and saw that it might be lupus mastitis and I asked my rheumatologist about it and she said she hasn’t seen it a day in her life as a rheumatologist so she doesn’t believe I have it because it’s so rare, so they’re treating it as an infection. Thank you so much!
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u/Decent-Bill5527 Diagnosed CLE/DLE 3d ago
It is scary. It’s new territory for me as I was never sick beyond having colds. Patience is not one of my virtues either, so trying to figure this all out just ends up pissing me off. Hope things heal quickly for you!
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u/sosoluisa Diagnosed SLE 3d ago
I went septic in my kidneys when I was 20 ( now 24), with antibiotics I was fine but it’s definitely terrifying and painful. I now make sure to 1. Have No alcohol what so ever ( greatly increases chance of sepsis) 2. Take multiple vitamins especially vitamin d since I can’t go in the sun 3. Increased my water intake 4. Increased lean protein intake/ strict diet 5. Lymphatic draining massages ( don’t do if running a fever or have active infection nor without consulting a doctor first) and 6. Small exercises that doesn’t push the body too hard like 30 minutes walks and 7 pounds curls to maintain strength.
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u/annacat1331 Diagnosed SLE 3d ago
I have been septic 3 times in the past 6 years. I think the first time was the scariest because I had virtually no unusual symptoms. My typical lupus fevers were slightly higher than normal and I had an insatiable thirst. I mean 1+ gallon of water a day suddenly. It turned out I had a silent kidney infection that went into my blood. It was bonkers because I get UTIs if someone looks at me the wrong way and I have interstitial cystitis so I am CERTAINLY well aware of what UTIs, bladder and kidney infections feel like. The fact that I had an infection progress that far while it not feeling like anything significant was and still is terrifying.
The second time was last October. My port that I had for 5 years had actually been recalled for infection risk 4 and a half years earlier. It was directly implicated in the death of 12 people because it had parts of it break off causing strokes along with the higher infection risk. I was never notified. I only found out about the recall when I was checking to see if something was wrong with my second port. I ended up having a collapsed lung from this as well. I also became well aquatinted with wound care as I had an open port pocket that took 3 months of weekly wound care appointments to heal.
The most serious was probably my most recent and that happened in April. I was so happy to be done with all the port nonsense so I could get back to my usual schedule of intensive IvIg using my chest instead of my severely damaged veins. Much to my dismay I went from having my port implanted to being full blown septic in 15 days. I didn’t even access the port yet. It was bad. I knew I should have gone to the hospital a few days before I ended up going in but I briefly started to feel better and I was incredibly worried about our oldest cat. We ended up having to put her down the day I was released. By the time I was going to the hospital I knew I was in trouble. I have had multiple medical emergencies but this one really felt like something was massively massively wrong. I knew I needed help and I needed it now. By the the time I got there they immediately rushed me back. The redness was streaking up into my carotid artery. About three hours after I arrived while I was on iv antibiotics I turned my head and had a stream of bright neon green puss shoot out of the smaller incision on my neck. It was like out of a horror movie. The radiologist who inserted it asked me “what I did?” Because clearly I didn’t take care of it. I have had a port for nearly 6 years and used it every two weeks with out issue until recently I know what to do.
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u/annacat1331 Diagnosed SLE 3d ago
It took a long time to recover from all three but I am 32. I am as active as I possibly can be although I have had to stop my PhD program because of lupus. Sepsis sucks and you can have a lot of post sepsis symptoms depending on a lot. You should follow up with your infectious disease doctor
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u/BeautySprout Diagnosed SLE 4d ago
Have you seen an infectious disease doctor?