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Sjögren's Syndrome Message Board
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Old 01-21-2010, 05:56 PM   #1
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gcbpgh HB User
Can this be a Reaction too?

Hi All, I have sjogrens that has gone into autoimmune hepatitis (cirrhosis). They tried plaquenil and imuran and I could not tolerate either one.

Recently, I was put on Cellcept and it was just great. I felt wonderful......noticed in the beginning a little dizziness but after the last 2 years that was nothing. Then I noticed my left ear aching and fullness with a roaring noise. Thought maybe an infection but I was going back to work and putting up my Christmas tree, no time for it. I just felt good finally.

I was planning on just moving forward again. Seen my new immunologist, couldn't hear what he was saying because my ear was so bad on Jan. 7, told him I had meniere's back in 2001 and he said maybe it was back. Nothing to do with Cellcept. Well now my right ear is starting.

Got on line today, called my pharmacist (yes it can cause ear problems) immunologist says stay on the medicine, Cellcept is not the problem go see my pcp......well one other thing when I seen him my numbers had not improved and my liver numbers had gone down. Not good. But I feel good.....except I am losing my hearing and I have a roaring sound in one ear.......now starting in the other ear......anyone have this happen? I don't want to lose my hearing any more than I have already. What to do?

Advice or suggestions.....help this noise in my ear is making me lose my mind.

Gcb in pgh

 
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Old 01-28-2010, 06:21 PM   #2
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Re: Can this be a Reaction too?

You're saying SS actually caused cirrhosis? Is this Primary Biliary Cirrhosis which is frequently associated with SS-A/B?

 
Old 01-28-2010, 06:53 PM   #3
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Re: Can this be a Reaction too?

Quote:
Originally Posted by dolby View Post
You're saying SS actually caused cirrhosis? Is this Primary Biliary Cirrhosis which is frequently associated with SS-A/B?
Yes, if you look it up under John Hopkins especially you will see that sjogrens can lead to autoimmune hepatitis which in turn lead to primary biliary cirrhosis. Also, you can have lung problems which I had for years. It drys the organs.....not everyone....this is rare.....so don't think you have it. But it happens. I know, I rarely if ever drank, did drugs etc.....nevr smoked...just always worked...my problems are all primary sjogrens.....and then the other.

Gcb in pgh

 
Old 03-05-2010, 08:27 AM   #4
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5smiles HB User
Re: Can this be a Reaction too?

Hi gcbpgh - I, too, have Sjogrens and live in the Pgh area. I go to a Rheumotologist in Butler, Dr. Mitra. He has been very helpful with all my symptoms and is proactive when any of my #'s change with my bloodwork. So far so good for me with dryness and medications. I take Evoxac and Plaquenil daily with a healthy dose of vitamins and multi-oil complex. Good luck.

 
Old 03-05-2010, 10:37 AM   #5
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Re: Can this be a Reaction too?

Quote:
Originally Posted by 5smiles View Post
Hi gcbpgh - I, too, have Sjogrens and live in the Pgh area. I go to a Rheumotologist in Butler, Dr. Mitra. He has been very helpful with all my symptoms and is proactive when any of my #'s change with my bloodwork. So far so good for me with dryness and medications. I take Evoxac and Plaquenil daily with a healthy dose of vitamins and multi-oil complex. Good luck.
Thanks and I am happy that Plaquenil helps you. I had serious side effects from it and could not take it. That's when they switched me to Imuran. The same thing on the side effects. Cellcept is the least as far as the side effects with the exception of my ear and hearing....I am losing my hearing and the noise is enough to drive a person insane......my balance is totally off and sometimes I walk like I had way too much to drink for someone who never drank much at all......I don't know what else to do.....if I don't treat the sjogrens then the autoimmune hepatitis will basically destroy my liver completely from everything I have read and what my doctors says...it must be treated....so frustrating......I also take many vitamins....good luck to you.

Gcb in pgh

 
Old 03-05-2010, 10:41 AM   #6
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gcbpgh HB User
Re: Can this be a Reaction too?

Quote:
Originally Posted by 5smiles View Post
Hi gcbpgh - I, too, have Sjogrens and live in the Pgh area. I go to a Rheumotologist in Butler, Dr. Mitra. He has been very helpful with all my symptoms and is proactive when any of my #'s change with my bloodwork. So far so good for me with dryness and medications. I take Evoxac and Plaquenil daily with a healthy dose of vitamins and multi-oil complex. Good luck.
Thanks and I am happy that Plaquenil helps you. I had serious side effects from it and could not take it. That's when they switched me to Imuran. The same thing on the side effects. Cellcept is the least as far as the side effects with the exception of my ear and hearing....I am losing my hearing and the noise is enough to drive a person insane......my balance is totally off and sometimes I walk like I had way too much to drink for someone who never drank much at all......I don't know what else to do.....if I don't treat the sjogrens then the autoimmune hepatitis will basically destroy my liver completely from everything I have read and what my doctor says...it must be treated....so frustrating......I also take many vitamins....good luck to you.

Gcb in pgh

 
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