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Sjögren's Syndrome Message Board
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Old 11-05-2009, 09:32 AM   #1
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Location: pittsburgh, Pa
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gcbpgh HB User
looking for advice

I was diagnosed 2 years ago with primary sjogrens and autoimmune hepatitis.
Plaquenil does not help. My liver doctor and rheumy got together and put me on imuran. It was a disaster for me. I can't take it.

The last appointments with my liver doc, he took me off of it and ordered blood work. He was looking for why I could not take the imuran. Well the rheumy who I seen right after said he would talk to the liver doc and they would try maybe cellcept.

The lab completely messed up the blood work. It can't be redone because I have been off the medicine. The tops of both my legs where they attach to your body (groin area) are splitting and bleeding. My Rheumy would like to do sleep apnea. (know idea why) and the liver doc called this morning and his suggestion was for me to join a sjogrens support group.

No medicine till I see him in late December. He wants to put me on something in person. I have read that John Hopkins has a Sjogrens Center. Has anyone ever been there and helped? With autoimmune hepatitis, though they say its caused by the sjogrens if left untreated, you have about 5 years. I am at 2 since being diagnosed. Also, I am so fatigued. I just want some help with a medicine I can tolerate and these doctors don't seem to know how. I am in Pittsburgh Pa. Any one out there who has all of this from the sjogrens. Its complicated with me, I understand because the sjogrens has attacked my liver. I don't drink etc. Any help, I am getting very depressed. Its 2 years and I am getting more and more isolated. Thanks,
Gcb in pgh

 
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Old 12-13-2009, 02:57 PM   #2
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Tracyv HB User
Re: looking for advice

I'm so sorry to hear of your troubles. I wish I could offer some words of advice but I don't have any medically. I do however believe in the power of prayer and I will definitely pray for you. I hope you can get some relief soon.

 
Old 12-27-2009, 11:40 AM   #3
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Join Date: Mar 2005
Location: pittsburgh, Pa
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gcbpgh HB User
Re: looking for advice

Why thank you so much for such kindness. I did change doctors and finally I have a doctor that knows what he is doing. I am now on cellcept. What a difference.
I feel good for the first time in 2 years. Its about a month now so I hope nothing changes. It only took 4 doctors so I would tell everyone to keep trying. This doc actually knew about Sjogrens....amazing. Side effects are at a minimum.
I wish you a very Happy New Year and the best of health in 2010.
Gcb in pgh

 
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