Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Debs, I have been wondering how you are doing so it was so nice to hear from you again. I'm so sorry that you are having so many problems with the care that you've been receiving. They always say that you have to kiss alot of frogs before you find your prince, I guess you've been having loads of frogs as your nurses. Hopefully you'll find a great care provider soon. I'll keep you in my prayers that from now on you start to improve as fast as you'd like. if I don't talk to you naytime soon, please have a wonderful Christmas with your family. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 If the doctor isn't calling you back, he isn't acting as a doctor should. Even if he were angry with you for some reason (unlikely), that would not be appropriate, responsible professional behavior. Do you have any other option for doctors? Perhaps his front desk is inefficient. Send a letter if you have to. Keep calling, and ask why your calls haven't been returned. You really do need to know what the blisters are. Specifically ask about "dermatitis herpetiform." Harper In a message dated 8/24/2004 4:09:17 AM Pacific Standard Time, writes: I really don't know how to describe the blisters. They would just occur randomly-some large but most small. I even had some in my nose--bottom of my feet--stomach--back of my arm. I had thought that I was just being bit by something but no one else in the family had a problem. I have been trying to get hold of my dr and ask him if I could try the Imuran again only a lower dose and try to increase it slowly and see what happens. However, I can't get him to call back. I guess he is mad at me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 , I have been taking 150 mg Imuran for a little more than four years. I expect to take it and some Prednisone for the rest of my life. I began at 80 mg Prednisone but am now down to 7.5 and 5 mg, alternating days. I don't know whether I'll be able to go lower without flareups. You might want to do some more research on Imuran. My sources (and I checked many) indicate that, while Imuran has side effects, they affect very few people. One study that seems particularly rigorous looked at long-term side effects in people with multiple sclerosis and found very little damage that could be linked to the drug. Harper In a message dated 8/24/2004 4:09:17 AM Pacific Standard Time, writes: Message: 11 Date: Mon, 23 Aug 2004 21:45:50 EDT From: DPS0322@...Subject: (no subject)I was diagnosed in 1996 with AIH. I was in total liver failure when I was diagnosed. Was put on 50 mg of pred for 6 mos then taken off and put on 100 mg of imuran. I joined this group not too long after being diagnosed but haven't posted lately. I have had 3 flares while on imuran and the last biopsy I had (6 mos ago) showed stage 2 fibrosis. Most of the time I feel OK. Started back to the gym and go at least 4 days a week. It seems to help with leg cramps and other aches and pains. I guess I would like to know if anyone in the group now has been on imuran as long as I have. Have read a lot of negative things about long term use and have been told that the side effects of imuran would probably kill me before my liver does. Also, was wondering if any of the original members were still involved with the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 In a message dated 8/24/2004 4:09:17 AM Pacific Standard Time, writes: I'm trying using light weight training and some walking/jogging. Has anyone else found it difficult to exercise? My regular doctor just seems to think that it's just the normal tiredness that goes along with anyone who's out of shape (that's me ;-) ) getting started on a regular exercise program. Maybe it is and I just need to keep going. I'm just not sure what to do when I'm fatigued, do I keep going and do I rest. Doesn't seem like there is one right answer.Would love to hear your experience? Any suggestions?? I'd appreciate the input.Thanks, Charlotte Fatigue is strongly associated with liver disease, from everything I read. One source -- Palmer's book, I think -- makes the point that the amount of fatigue does not correspond directly with the severity of the illness. Many people here have commented that a short period of rest when they begin to feel tired seems to prevent two or three days in bed. harper Quote Link to comment Share on other sites More sharing options...
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