Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 I was on a newly approved medication when I got sick. The doctor explained that I had AIH for years (unknown), but the medication accelerated the condition. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Hi and Rosemary: My response is late compared to others on the list as I have been out of town. Thanks for sharing the backgrounds of Mark and Hunt. My son also had symptoms similar to yours'. It was jaundice that made us first aware that some thing was wrong. Later, his blood was analyzed which indicated that his liver function was compromised. On a Friday night (last year in May), he was admitted to the hospital and underwent surgery for a liver biopsy (because of PT time being high). We were lucky that his liver did not fail as his enzymes were really high (ALT 4 K, AST 4.4 K, GGT 94, AP 547, Tot. Bili. 19.4). There was a possibility of liver failure those days and a hepatologist was consulted. After the operation, he was put on 60 mg of Pred. and the situation began to improve. As his Pred. was tapered off, immuran was added (100 mg a day). However, as medication were further lowered, he seem to have had mild relapses (twice) as his enzymes started to go up. So, his Gastro increased the dose slightly. Currently, he is on 5 mg. Pred and 75 mg. Imuran daily. Because his most relevant enzymes are normal, his doc thinks that the liver is not inflamed. The only thing we worry about is why are his GGT (157) and sed rate (70 mm/h) are high. The gastro does not seem to have an answer for these except to say that the GGT is non-specific and the sed rate is indicative of some inflammation some where. And, in order to determine if the high sed rate is due to his liver, he is recommending a biopsy. We are leaning for it too because the biopsy would provide a more specific answer. Also, one would see if any damage has been occurring to his liver cells. Take care -- Aumesh -------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Your son's case is similar to Mark's. What did the first biopsy indicate? Mark's biopsy suggested he might have PSC (Primary schlerosing cholangitis) and one week after an open liver biopsy, this 13 (at the time) year old had to have an ERCP scope done, which ruled out PSC. Through process of elimination and blood tests, AIH was the confirmed diagnosis. What was your son's PT that an open biopsy had to be done? Mark had to take Vitamin K to get his PT down and was given IVs of fresh frozen plasma during both of his hospital stays in December of 1998. What a scary and confusing time that was. Since then, Mark has not had a sed rate done. But, his GGT was elevated, @ 2x normal for about a year until it finally went and stayed at normal. I forget how old your son is, but he is at a lowe dosage of Imuran. Mark will be 15 on 10/18 and is on 100 mgs of Imuran daily and 10 mgs of prednisone every other day. Thanks for sharing your information with me. I will get Mark's second biopsy results in @ a week and sometimes I just can't shae the " what ifs " from my mind. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Hi : There are numerous parallels between the two cases. Hopefully, by sharing the information both will benefit. My son, Raj (was 16 last year in May), biopsy indicated that he had " severe active hepatitis with central lobar necrosis without central lobar cholestasis " . However it failed to reveal the etiology of his hepatitis. The hepatitis was not attributable to Hep. A, B, C, EBV, CMV or toxoplasmosis (whatever that is). Raj's ceruloplasmin was not elevated nor were any autoantibodies were found (the latter usually present in AIH). His PT level was 21, INR of 1.9, and bilirubin 19.4 when Raj was admitted. While in the hospital, he was put on vitamin K, E, and C. Also, similar to Mark's situatiion, Raj was also given IVs of fresh frozen plasma. He was started on the Pred. after his open liver biopsy and then only things started to improve. My son also has had some minor skin infections while on medication and I was wondering if Mark has had any. Raj had planter warts (soles of his feet). and lately, he has been having incidences of some infection in his arm pits. I think it's not a big deal compared to what he has got -- the AIH. Please tell Mark I wish him happy birthday on his coming birthday (10/18). Thanks for sharing. Aumesh ------------------- At 09:47 PM 10/10/2000 EDT, you wrote: >Your son's case is similar to Mark's. What did the first biopsy indicate? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Thanks Sylvana. We have tried coconut oil and that helps some what. Will try your suggestion. aumesh ------------ At 03:38 PM 10/07/2000 +0200, you wrote: >Hi Aumesh, > >It must be his immunesystem playing tricks. >Ever tried to rub it in with olive oil at night and wash it out the next >morning? > >Sylvana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Hi Aumesh, Are you from India? I am asking because I read your son name is Raj. My ancestors are from India, Nepal and China. Pretty cool combination I think myself! Good luck on your trip to Mayo Clinic. Sylvana Re: [ ] Aumesh Thanks Sylvana. We have tried coconut oil and that helps some what. Will try your suggestion. aumesh ------------ At 03:38 PM 10/07/2000 +0200, you wrote: >Hi Aumesh, > >It must be his immunesystem playing tricks. >Ever tried to rub it in with olive oil at night and wash it out the next >morning? > >Sylvana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Hi Aumesh, I am 47 years old and I have to have a weekly pill keeper. All of these senior moments turn into hours. LOL Hope your son is feeling good this week. Genny/Jodi's Mom/AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Aumesh... Thanks ...I had not seen the orginal post and did not know who this person was....so hard to keep up with everyone.... again thanks... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Wow things sound like they are going great....congrats....and Raj graduated last week....Congats again....I am glad that he is able to go away for college...how far away will he be.... Ty graduates this coming wed...the 20th...His senior grades did not come in ...because he missed so much school this winter....so he could not send out any applications for college....so he will be going to the county college...he wanted to go to N.Eastern at one time....in Boston....we live in central NJ....so I am relieved that he will not be going so far away...hopefully this coming yr will be better for him and he will be able to go somewhere on campus the following yr....we will see.... I have tried to keep up with everyone here...but the group and the other one I am on have gotten so large it is very hard....over 100 e-mails daily..... Enjoy your summer and hope you get to meet some of our group at the conference.... Take care Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 Hi... It is a shame that you had to go to 2 different dentists...but glad the problem doesn't sound as bad.... So is Raj excited about moving out to the dorms.....How far away is the University from home...Ty did not get any of his senior grades in in time to apply for college...so he is going to go to the county college...it is only about 1/2 hour away....and there are no dorms....so he will be driving the jeep back and forth....but after everything that went on this past winter with him I am glad that he is not going to be away...really too much to have to deal with...I would like to see him get stronger and be getting better instead of bouncing in and out of the hosp.....Hopefully when the time comes to transfer he will be doing so much better.... I can't believe that the summer is almost over....It always goes way too fast.... Enjoy the moving day next week....and will talk to you soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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