Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Kay Lynn, I'm so glad you're feeling better. When I was newly diagnosed, I couldn't think at all. I was too embarrassed to do more than mumble to my GP that I felt confused. No one told me that this was related to the disease. Best wishes, KayLynn. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi everyone, I want to share some GREAT NEWS!!!!!! I post infrequently, but read the digest every day. Back around October, I was lamenting the problems of awaiting SSD, some of you were so helpful, thanks for the thoughts and prayers also. The Saturday after Thanksgiving, I received a "fully favorable" decision from the judge, did not even have to go for a court date after 2 denials, when I opened the thick envelope and read that I began to shake and cry with joy! Now I can get on with my life, find a tiny place of my own, and try to do as much for others as they do for me! I could not have received a better gift at the holidays............Never give up hope, stay inspired, all of us! May joyous days be ahead for all in this season of Peace! in Illinois, AIH diagnosed 1993 wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Dear Clara and Shirl and all, Thanks for the input! I think it is important to be as informed as possible on this disease. Because so many doctors have little experience with it and differ in their treatment options. Dr. Czaja and others provide lots of information, that although is quite technical, it helps to answer many questions, so that one can be well informed when talking with the doctor. One of the questions facing me now is should I go off the meds completely when my hepatologist says to do it. I will be the one to face the consequences of relapse and it looks almost certain from what I have read that I will relapse, 70-80% chance. But upon further reading, the drugs themselves can pose dangers after many years of use, so that is why doctors attempt to withdraw the drugs. I don't like this experiment being performed on me, but this is the only way they can tell if a person still needs the drugs. When I looked into it further, I found that there are some genetic marker studies that can determine prognosis. Why don't the doctors do these tests first before attempting withdrawal? Dr4 positive markers predict better survival after treatment withdrawal, while DR3 does not. There are other articles that are easier for the laymen to read, I will find them and post them if you like. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Hi Pat, I did stop the prednisone and stay on 25mg of Imuran for a year. After a year I came off the Imuran as well. I had blood tests done every 4 months and then 6 months after that. However, at this time I did not have the cirrhosis, that came after my recent relapse. I am obviously a little more scared and cautious this time round because of the cirrhosis factor. My specialist's goal it to now decrease the prednisone, eventually to around 2.5-5mg's and increase the Imuran. I am seeing a different specialist now than I was the first time round. I am much happier with this specialist and can already notice a difference in the way she does things (much more in-depth). I hope you find this helpfull. Take care. Kendra > Hey Kendra, > I appreciated your e-mail to because I too just went off Pred, but am > on 50 mg Imuran and hope that is enough to keep this old liver from becoming > inflamed again. I too have cirrhosis so do not want to risk doing any more > damage. My questiion to you is, were you totally off drugs or did you stay > on maintence dose of Immuran? When off drugs, how often did you go in for > blood tests? Any information is so appreciated. Thanks. > Pat > > >From: " goatgonefishing " <goatgonefishing@y...> > >Reply- > > > >Subject: [ ] Re: Digest Number 3786 > >Date: Sat, 04 Dec 2004 03:28:14 -0000 > > > > > >Hey , > > > >What a tough decision you have ahead of yourself. I have been > >diagonosed with AIH for 5 years. AFter the first 2 yrs. of being on > >meds I came off. I was sooo excited and happy about it all. Then 5 > >mths ago, I had another relapse, I was so sick again, back to the > >specialist and another biospy done and now I have cirrhosis. Back on > >the meds I am, but I have a very different outlook on it now. I > >don't ever want to feel as sick as I did again, and I am much too > >scared to come of my meds now that I have cirrhosis, one more flare- > >up and it could be big danger for me. My specialist has confirmed > >that I will never be off my meds again. If you and your dr. decide > >to come off of them, make sure you are being monitored closely, and > >the littlest sign that you think may be an indication of a relapse > >get right to the dr. don't wait for a few signs in a row to convience > >yourself. Good luck with the decision making and if you want to e- > >mail me you can. > > > >Kendra > > > > _________________________________________________________________ > Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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