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Vee J and others:

Thanks for you quick, as always reply. Glad your back on the boards!

This sounds exactly like what I am going through. I got so fustrated last night because I just had one infection, then a cold, like two days of reprieve and now I have this sinuitus thing. It just never ended this winter. I just came back from the Ear nose and throat guy who put me on three allergy meds, two nose drops, and an antibiotic! Drastic I thought, but he said it was really bad. Anyways I was wondering how you or others dealt w/ being ill in the winter time or in general? Were employees and others understanding? I work part time (cut back my hours since I got sick) and am getting my masters (with thesis), and I am totally behind in everything and have taken more sick days this year then I ever have before. I think everyone is getting fed up with it all, and normally I am really a good employee/student, but this whole thing is taking such a toll this year. I feel like I'm sinking in everything and I just hope I can pull it all off. Oh well I'm just complaining. Needed a vent:)
I, too, get frequent and severe infections. In fact, in 2001, at age 27, I almost died from an ear infection! DEspite already being on an antibiotic for the ear, I developed something called malignant (necrotizing) otitis externa, where the ear infection spreads into the bones of the skull and the soft tissues of the face. Being hospitalized on IV antibiotics saved my life, although at that time, the pain was so bad that I sort of wanted to die. Malignant otitis externa is rare and usually occurs in elderly diabetic people. Well, I was in my 20's and not diabetic, just a lupus head :)
Dear ctjedda,

I remember comparing medical histories with the woman I know who'd had otitis. We were both very interested because we'd both had the same rash, the nonscarring annular torso/arm rash seen in the SCLE subset, and neither of us had met anyone else with that rash.

Both of us had decades of seemingly pretty similar medical complaints: severe sinus problems [might that be of big interest?]; GI woes; high fevers with convulsions; migraines; pneumonia; big shoulder and elbow pain; anemia; etc. Our problems weren't "new"---we'd both started young.

Also, we both had processed hair, but she changed hers more often and more dramatically. We both had pierced ears (she had more piercings, though, along the ear pinna), plus both of us had severe allergic reactions to costume jewelry.

She'd been Dx'ed already with SCLE, then later on ANA, Ro autoantibodies and antiphospholipid turned up clearly. She'd tried Plaquenil, then stopped it when she started Prednisone. She was still getting some sun exposure, while I'd quit the first time I found lupus was even a possibility.

Anyway, that's what I remember. We talked these things over a lot. We were both very interested in the comparisons, but we realized that even with all the overlaps and differences we found, we'd not be able to compare, say, genetic makeup!

Did your drs. have any thoughts as to possible causes of otitis? Or did you find anything while browsing?

Anyway, I hope the otitis is in your PAST, for good! Take good care, Vee
Hello Vee!

I also have had some of the problems you mentioned. As far as the rash goes, I had the initial typical "butterfly" rash, which cleared up with Plaquenil. I also had one horrendous experience of HUGE disc-shaped lesions all over my legs, trunk, and a few on my arms, but that was most likely a result of sun exposure and I thankfully haven't had that since.

As far as infections/illnesses go, I don't seem to get sick any more frequently than most people, but when I get sick, it is generally always more severe. The doctors were clueless about my otitis. They asked me a zillion times if I was on Prednisone (I wasn't at that time), then decided it was simply lupus-related immune issues.

I have SEVERE environmental allergies (not so much to pollen, but the indoor stuff, mainly animals dust, and mold), and take lots of meds (Zyrtec, Advair, Nasonex, and sometimes Prednisone and Benadryl) for that, and I was on allergy shots in high school until I was diagnosed with lupus just after graduation and was advised to stop the shots. However, jewelry is about the only thing I am not allergic to!! I have also had allergic reactions to 2 different brands of hair color.

Speaking of all this, I find it hard to believe that my lupus, Hashimoto's thyroiditis (which was diagnosed at the almost-unheard-of age of 8), severe allergies, and severe infections are not related. My rheumie doesn't want to see the connection, but all of the above are immune-related disorders. My body spends too much time fighting itself and cat dander :jester: to be concerned about ear infections and flu!! Does anyone have any info on how all of tihs is connected (and what to do about it!)

Thanks, ctjedda
So is frequent swimmers ear connected at all to this Otitis stuff? I stopped swimming cause I was worried with the clorine and my "wonderful" skin, but when I did swim always swimmers ear. It hurt like *&^%

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