Mayo Clinic Connect
Just diagnosed with amyloidosis. I have no symptoms other than bruised skin. What can I expect for treatment and prognosis?
How are you doing, Clark? My story is similar; diagnosed 12 days ago with just bruising. What is happening with you?
II am being treated with infusions of Velcade/Dexamethasone weekly for a three week period, then one week off. I do have small amyloid deposits on my hands, but have been fortunate so far not to have any further involvement with other organs. I started treatment in September, 2011. What treatment are they recommending for you?
Thanks for getting back to me so quickly. Feel free to ask me anything. If you don’t mind, I have some questions. If you do not want to answer any of them, I will understand.
Are you tolerating the treatment well? Are the deposits in your hands more bruising? Carpel tunnel? I have read of something called SAP scintigraphy, a full body scan that supposed to show amyloid deposits. Anyone mention SAP scintigraphy to you?
I don’t have any recommendations, yet. My wife noticed bruising on my leg in June. The bruises re-occurred without any apparent cause. I went to my internist in September; had an ultrasound of my leg, and came away with a diagnosis of vasculitis of unknown origin and a recommendation for a dermatology consult. The derm doc did a biopsy on Nov 5. She called me on Nov 16 to tell me I had amyloidosis. My internist took blood and urine from me on Nov 19th, saying she planned to refer me to an amyloidosis specialist. I expect results any day now. From what I have read, I consider myself very lucky to have only bruises on my leg.
I would be happy to hear anything you want to share with me. Thanks.
Yes, I am tolerating the treatment well and really haven’t had negative reactions to it so far. The deposits in my hands are small raised white spots. I had carpal tunnel several years ago, but it stopped somewhere along the line.
No, I hadn’t heard of SAP – I was diagnosed locally and went to Rush Hospital in Chicago for the final diagnosis. I am being treated locally by a hematologist. When is your appointment with the specialist? I hope you will receive positive news regarding treatment.
My arms and hands bruise very easily and my skin rips and bleeds. That and the amyloid deposits are my only symptoms.
Please feel free to ask any questions as you go along and I will answer as well as I can.
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