Hello, I am sorry you have this horrible condition. I have not heard of ferripox, but will try and find out something as there seems to be little help for people with this.
My husband has had it for (I guess) about 3-4 years and has lost much hearing, most of his sense of smell and his balance is not good either. Despite these very 'classic' symptoms, his neuro didn't spot the problem on his MRI until he developed Bells Palsy and was hospitalised for a couple of days - then they started looking further into his condition!!
What symptoms do you have, and how long has it been going on? We are at a loss to know what the future holds as no one can give us any information.
We wish you well, and trust that despite this condition you are still able to enjoy life - thank you for responding.
The Following User Says Thank You to Julia Salter For This Useful Post: mjd828 (08-11-2011)
i too have ss and am likely to undergo treatment with ferriprox in the very near future. i am one of dr. levy's patients. i am scheduled to have one more test, a ct myelogram of my spine and brain, before starting the drug treatment. the test is the last in a series of MRIs, MRAs, and angiograms that i've had in an attempt to locate any bleeding sources. so far, the doctors seem fairly convinced that the bleeding is occurring in/near my left ear but unfortunately the tests have not been able to pinpoint the source of the bleed and thus are hesitant to perform exploratory surgery in so sensitive an area. i agree.
if the ct myelogram is inconclusive, i intend to immediately begin the ferriprox treatment, tho i am aware of its potential dangers. i have learned that the drug, while available in europe, australia, central and south america, is still not available in the u.s. because of the fda's concern about its safety. (only a few doctors are approved to use the drug on a "compassionate" basis.) the most serious problems appear to be immune problems, possible liver and kidney damage or failure. in an effort to avoid these problems (or catch them early in the testing process), weekly blood tests will be required to monitor liver, kidney and other functions. some patients develop bronchitis and require immediate antibiotic treatment. but you may already know some or all of these things.
to find out more about ferriprox (generic name: deferiprone), i would suggest you thoroughly check the internet, tho you probably have already done so. there is actually quite a bit of information available (it even gets to be repetitive). you do have to sleuth a bit to find things and it can be time consuming. in addition, to learn more you might check the ss website run by dave hill and write to dr. levy if you haven't already done both. dr. levy is very concise tho thorough and he responds very quickly to questions. before i agreed to participate in the ferriprox trial, he sent me considerable information about deferiprone and answered a ton of questions for me. i'd be glad to send you a copy of our exchange, but i don't know quite how to do it using this message board. as a matter of fact, i'm having difficulties accessing the board (i'm not the most computer literate soul!), so please don't be disheartened if you post a note but don't hear from me immediatley.
my ss problems have worsened, too, especially in the last year, to the point where i feel i have no choice but to try ferriprox. the most serious of my problems include a hearing deficit, gait ataxia, doublevision, and memory issues, etc.
Last edited by moderator2; 03-20-2009 at 06:54 AM.
Reason: please do not post your email address in the public forums - instead, use the private messaging system
The Following User Says Thank You to martha1228 For This Useful Post: mjd828 (08-11-2011)