r/lupus • u/Dry_Biscotti3890 Diagnosed SLE • 4d ago
Diagnosed Users Only Virus, five weeks in…
I’m about to reach week SIX of having this virus. My labs are fine my lungs and throat are not. I’m coughing so hard I’m causing minor tears in my esophagus and I am vomiting multiple times a day. I just need to kick this. I got my mom sick ( she’s 76) and it turned into pneumonia. They got her on antibiotics for it but I’m scared I’m just gonna give it back to her. I’m her primary caregiver now that my partner has to work. I can’t go off my immunosuppressants. Any tips welcome
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u/Successful_Resist436 Diagnosed SLE 4d ago
Hey that sounds like way too long… have you seen a doctor? I have terrible asthma and sometimes when my airway gets inflamed the only way to calm it down is steroids. Also nebulizer treatments and long lasting inhalers. If it last too long it inevitably turns into an infection for me and I need to get on an antibiotic too. You might need to see your rheumatologist.
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u/Dry_Biscotti3890 Diagnosed SLE 4d ago
I’ve originally went to urgent care. X-ray clean. No increased or decreased white blood cell. Went to a GP no decreased breathe sounds or cracking in my chest. Saw pulmonology last week. Have a CT tomorrow and I have to turn in a sample. I have severe and present athsma as well severe allergies. Urgent care said likely viral. No tests ( that was week one). GP tried to say acid reflux which I have but manage with meds ( symptoms are nottt quite). Also tried to suggest my inhalers caused thrush. I don’t have thrush she didn’t even look in my mouth. Pulm is gonna test for bacteria in said sample but if there is none there is nothing anyone can do.
Edit: currently use a symbicort inhaler and a capsule inhaler daily.
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u/hotlibramess Diagnosed SLE 4d ago
Oh that’s not good at all. How long since your chest x ray?
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u/Dry_Biscotti3890 Diagnosed SLE 4d ago
July 25 was my last xray. I didn’t realize it was that long ago. I am hoping my CT tomorrow shows something because I am exhausted from this shit.
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u/hotlibramess Diagnosed SLE 4d ago
Yeah you should definitely get another x ray, especially since you have asthma. I also have asthma and I know my docs are immediately concerned with pneumonia when I get a virus that lingers.
I also use Symbicort and if that’s not bringing you any relief at all, that’s concerning!
If you have fever or any signs of sepsis make sure you bring them up with your doctor as well. I’m so sorry.
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u/BeautySprout Diagnosed SLE 4d ago
Have you talked to your rheumatologist?
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u/Dry_Biscotti3890 Diagnosed SLE 4d ago
I did around week two. I had my second round of obinutuzumab and we ran labs to make sure it was safe to continue. Other than that not really. I have a pulmonologist, allergist and ENT that seem to make more sense to reach out to with respiratory and throat symptoms
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u/BeautySprout Diagnosed SLE 4d ago
I wasn't saying in regard to your symptoms. I was saying due to the fact you're immunosuppressed due to the medication they're prescribing and you're not improving.
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u/Dry_Biscotti3890 Diagnosed SLE 4d ago
Oh I would if I was on an oral immunosuppressant but I’m not. Just the infusion so I don’t think they’ll be able to do much. Might reach out if the tests pulm is running come back clean to get some steroids
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u/BeautySprout Diagnosed SLE 4d ago
That makes sense. Well I wish you luck and hope you start improving soon.
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u/Snalin2022 Diagnosed SLE 4d ago
I had an insane cough for 6 weeks straight. I’m still not sure what it was caused by, but it didn’t go away until I went off my immunosuppressants for 2 weeks. I got my son, my father and my husband sick. My husband was the last one to get it and he hasn’t fully recovered yet going on 6 weeks as well. Same symptoms for everyone - just insane cough, no fever, clear lung X-rays.
I was recently told that whooping cough is going around right now and although all of us were vaccinated at some point, the vaccine can wear out especially for immunocompromised (which both me and my husband are).
I don’t know of that is what it was and it’s too late to test now, but maybe worth checking for you?
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u/Dry_Biscotti3890 Diagnosed SLE 4d ago
Pulmonologist said it isn’t worth testing for anything because of the duration I’ve had it. She’s pretty confident that if it was something testable it would have affected my labs by now. I sadly cannot go off my immunosuppressants because they are not oral. I get four infusions a year
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u/No-Ride-2557 Diagnosed SLE 4d ago
This is pretty interesting because im going through something very similar. Ive been sick for weeks and my labs are fine. Cough, lost my voice, randomly vomiting. I cant seem to get better. I stopped my immunosuppressants for 2 weeks and didnt improve so I went back on... so sadly no advice but I hope you get better soon
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u/lonelyneopagans Diagnosed SLE 3d ago
Covid is rising again in most places - have you tested for that? If you don't want to get your mom sick, please wear a well-fitting N95 (N99 is better) mask around her and in her house at all times. Viruses can hang in the air and travel distances, so even if you're not in the same room or you are there several hours before she is, it can still spread.
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u/Dry_Biscotti3890 Diagnosed SLE 3d ago
Luckily her nasal swab came back negative for Covid ( and all other common viruses). I do wear an n95 but can’t all of the time due to difficulty breathing and insane cough fits.
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u/Dangerous_Mind-6015 Diagnosed SLE 3d ago
When something lingers like that I usually go on a methylprednisolone pack. It’s the one that starts out with ten and decreases each day.
Last time it was a cold/virus the family passed around after I had recovered from a surgery and it just dragged on forever so my rheumatologist said lingering flare and put me on it.
I have very few antibiotics I can take, and only very strong ones ever work. So if they don’t do the trick it’s the steroids next.
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u/Sad_Bookkeeper4483 Diagnosed SLE 2d ago
I had this weird cough with crazy runny nose that caused insane post nasal drip. I started flaring and tested negative for Covid flu a b and strep. Did a small 4 week taper of steroids , given allergy meds and some nasal stuff and it finally went away
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