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Sjögren's Syndrome Message Board
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Old 05-25-2007, 06:27 PM   #1
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Mike'swife HB User
Smile Sjogren's, pheripheral neuropathy, vasculitis, plasmaphoresis

My husband was diagnosed with Sjogren's syndrome 4 years ago. His only symptom was painful burning feet. After tons of blood tests he tested positive for Anti-SS-A and anti-SS-B,elevated sed rate, positive ANA. His initial treatment was prednisone. After 2 months he developed steroid induced diabetes. He has been treated with methotrexate, Enbrel, IVIG, cytoxan and cellcept. All had to be discontinued because of side effects. Following his 3rd dose of IVIG he developed leukocytoclastic vasculitis. His pain is being unsuccessfully treated with nortriptyline, neurontin, and dilaudid. both his neurologist and rheumatologist have decided to try plasmaphoresis. He will be hospitalized next tuesday, a access port will be placed and he will have 5 days of plasmaphoresis.

My hubby is 51 and we are the proud parents of new great boys...age 17 and 10.

His current diagnosis is pheripheral neuropathy secondary to sjogren's syndrome induced vasculits.

DEB

 
Old 08-16-2007, 09:41 AM   #2
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Join Date: Aug 2007
Location: Canada
Posts: 17
mizabk HB User
Re: Sjogren's, pheripheral neuropathy, vasculitis, plasmaphoresis

Quote:
Originally Posted by Mike'swife View Post
My husband was diagnosed with Sjogren's syndrome 4 years ago. His only symptom was painful burning feet. After tons of blood tests he tested positive for Anti-SS-A and anti-SS-B,elevated sed rate, positive ANA. His initial treatment was prednisone. After 2 months he developed steroid induced diabetes. He has been treated with methotrexate, Enbrel, IVIG, cytoxan and cellcept. All had to be discontinued because of side effects. Following his 3rd dose of IVIG he developed leukocytoclastic vasculitis. His pain is being unsuccessfully treated with nortriptyline, neurontin, and dilaudid. both his neurologist and rheumatologist have decided to try plasmaphoresis. He will be hospitalized next tuesday, a access port will be placed and he will have 5 days of plasmaphoresis.

My hubby is 51 and we are the proud parents of new great boys...age 17 and 10.

His current diagnosis is pheripheral neuropathy secondary to sjogren's syndrome induced vasculits.

DEB
This is my first day going thru this web page of discussion on Sjogren's. I am sorry to hear your husband is so ill. Can I ask you as a spouse how are you coping? I ask asking because my body is rapidly being affected in numerous body systems and my husband & I are both so controlled by the illness now. It has changed our lives significantly as a couple and as individuals. I feel his loneliness when I have to send him to a social function on his own. As I am more isolated from the world outside I have less to share with him and thus even conversations are affected. I look after myself most of the time, do the laundry and sometimes can do grocery shopping. We have a housekeeper once a month to help out. I do enjoy taking care of my garden, in fact it is the one joy I still have......so I save coveted energy for this!
Can you give me some inside pointers on how you feel as a spouse and how it affects you? Thank you for any thots and input you can share.

 
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