I need help with my eyes and ears. My eyes are so swollen and my
ears. They drain so much fluid that at time I am partially deaf, and then when it stops, I can't hear for hours to a entire day, and suffer intense pain from the swelling of my canals.
go from draining to itchy in the canals too. I itch 24/7, and some
days it brings me to tears, pain so far I can handle it frm years of
practice, but this constant itching is driving me crazy(er). Any
or methods that worked for you are appreciatedI have had Lupus for more than 13 years. My new dr, said they should have caught it when I was in High School( I am 33 now)) I had severe growing pains, I was taken to multipple neurologist, and othopedists. My joints have been swelling since I was in jr. high, and I have had severe loss of time, when I get tired. Severe migraines, sensitivity to cold, and heat, but mostly cold. I have Raynaud's Phenomenon, and sjogrens syndrome. I also have stroke level HBP and degenerative disc disease. Due to the severity of my HBP, dr's couldn't get past it, to help me with all my other problems. Mis;dx'ing me, with just arthritis to rheumatoid arthritis, and complicated migraines, but my blood test always showed that something was wrong, I always had protein in my urine, and I have always been anemic. I have been mobile to cycling in an out of flares weekly. Last summer I was sick for two months with no break, and then it was every other month, and then every two weeks, and now daily. My sun sensitivity started in 8th grade. I was diagnosed with MCTD, with Lupus primary. My symptoms have so varied, I meet all criteria, on Fibro , Lupus, and Ms(except for two criteria on MS) Like Veej said keep your blood work keep your records, I am now on plaquenil, and I have been on several regimens of prednisone. Two of my first cousins have lupus, and one has MS, and on my Mom's side, one MS and several RA's. Thank you for reading
Dear jusbreatheOM, OOOOOW! I'm wincing... I haven't had anything as nasty as what your describe for your ears or eyes (only lesser stuff). But I know a woman, Dx'ed with SCLE (subacute cutaneous LE) and antiphospholipid syndrome, who had chronic nasty ear problems. The surface skin around her pinna, etc. was crusty, oozing, itchy, painful, etc. I don't think she ever told me what her rheumie called it, but she took daily IV antibiotics, several courses of treatment, at least, before it cleared.
I looked up "ears" in my hardcover. There's something called "chondritis", defined as inflammation of cartilage lining of outer ear. Treatment is steroids. I don't know whether this is even close to what you describe, though (not being a dr.).
Has your rheumie called the eye & ear thing any names at all yet? Tried to treat, or sent you to ENT (ear, nose, throat dr.) and eye dr.? I think I'd beg, or throw a loud tantrum, if he/she hasn't---the ear problem sounds crazy-making, and you sure don't want to risk your eyesight or anything like that.
I really hope somebody & something helps soon. Best wishes, from Vee GOOD LUCK!
Hi, there. Yes, you do seem to be having a bad flare. It seems like you need a major course of medication to attempt to get your symptoms under control, since it sounds like what you are dealing with is pretty debilitating. With your HBP at dangerous levels, I don't know if much more prednisone would be advisable. Have you been on any of the chemotherapy drugs?
I don't know about eyes, but ear problems were one of the first sypmtoms I had, even before I knew I had lupus. For at least six months before I was diagnosed, I had ear problems that consisted of itchy, raw, inflammed ears; ears full of gunk that sometimes plugged my ears and interfered with my hearing; ears that broke out in pimples down inside, which then healed and scabbed over, at which time I could clean out the crusty stuff. In a few days, the cycle of inflammation, drainage and gunk, healing, and crusty scabs would start all over again. Of course, trying to pick at or clean out the ears makes them even more raw (sometimes to the point of bleeding) and increases healing time, but when you can't hear and your ears are itching and feel like they are plugged up with something, who can just let that alone? Every time I tried to clean them out, it seemed that I pushed the thick gunk deeper into my ear and then I REALLY couldn't hear until the ears cleaned themselves out and opened up in their own sweet time, which could be days. The gunk was not ear wax by any stretch of the imagination.
This stopped when I began my initial treatment with prednisone. It was completely gone as long as my dosage was 20 mg or above. Once I dropped down to 15 mg or lower, the ear problems came back, although in a milder form. I am now on 12.5/10 mg alternating dosage of prednisone, and live with ear irritation daily. It doens't clog my ear anymore or interfere with my hearing, but still gets a little raw and oozes a bit and then dries up. I have accepted that this ear stuff will be a permanent part of my life. Irritating, but as long as the major stuff is ok (my nephritis is under control, so is the awful itching, my hair has grown back, my skin has healed), it is something I can definitely live with.
Hope you find a regimen that will give you relief soon.
Thank you both for replying to my post. I have been reading for years on about Lupus, and just hadn't found hardly information on my ears. Maybe they will put me back on prednisone. I was having such a rough time financially just affording my HBP meds, and now these, its enough to drive someone bonkers, not even counting the itching.I do appreciate the info.