have been diagnosed about 3-4 months ago with Cogans syndrome and meineres disease. My dr. has prescribed azathaioprine. I would like to know if this is a standard med for this condition and if anyone has had and luck with it. I have not yet started the med as I am so skeptical about all the bad side effects. I am not in pain, just losing my hearing and already have a slight eye blur. Is there anything else that can be done for this syndrome
I couldn't find a lot of information about Cogan's Syndrome but yes treatment does involve using immunosuppressive agents.
Azathioprine lowers your body's immune system. The immune system helps your body fight infections. The immune system can also fight or "reject" a transplanted organ such as a liver or kidney. This is because the immune system treats the new organ as an invader.
The link below has information about Meniere's Disease which you may find useful.
usual treatment is prednisone and/or an immunosuppressant. Methotrexate is generally the first immunosuppressant tried. Depending upon their response, treatment varies from patient to patient. There are a couple groups on Facebook that you might want to check out.
an open group ... Cogan's Syndrome
a closed group reserved for CS patients... Cogan's Syndrome-Coganites
a page listed as Cogan's Syndrome
Cogan's Syndrome is an extremely rare autoimmune disease characterized by some of the following abnormalities. Eye diseases such as interstitial keratitis, conjunctivitis, episcleritis, scleritis, or retinal vasculitis, posterior scleritis and retinitis. Symptoms sometimes include pain, tearing, photophobia and gradual blurring of vision. Tinnitus, the ringing, roaring, tingling sounds in the ears. Ménière’s like symptoms starting with severe dizziness, vertigo and instability. Hearing loss is a feared and classic complication of the disease, almost all patients experience bilateral hearing loss sometimes progressing to total deafness With treatment most ocular symptoms usually regress but deafness is only rarely reversible. Vasculitis in Cogan’s syndrome can cause major organ damage, and in rare instances it can be fatal. Patients may have silent coronary artery disease, inflammatory aortitis, inflammatory bowel disease and pericarditis occuring in about 10-15 percent of patients. Non specific systemic symptoms can occur such as fever, fatigue, headache, night sweats, arthralgia [joint pain], and myalgia [muscle pain].
I was diagnosed with CS about 6 years ago after going blind in my left eye after having a flu injection when I am allergic to eggs. Apparently I had had the symptoms for years and the flu injection brought it to the surface. I also have large rings on my joints which is a classic sign (?)
I have tried every conceivable treatment and have just started with dermatology and biopsies again.
Drugs offered vary as the consultant gets more frustrated, just avoid Gabapentin at all costs it will drive you mad and suicidal with your partner likely to walk out on you.
Just take as few drugs as you can, it ain't got a cure.
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