Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 In a message dated 12/15/02 10:01:04 PM Eastern Standard Time, msaire@... writes: I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Welcome Marty! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 > Hi! > My name is Marty and I somehow ran into your support group on the internet. I am so thankful I ran into your group. > I have a lot of experience with this illness, so maybe I will fit in. > > Hoping to hear from someone, Marty Marty, Welcome to the group! I tend to lurk more than post, but I wanted to welcome you. I have only been diagnosed with AIH for one year, but I don't think that I could have coped as well as I have without this group. Bless you for dealing with AIH on your own for 12 years! Please share with us about your experiences. Glad to have you here. (in Wyoming) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 Welcome. I am fairly new to this group myself, I don't respond very often to the messages - but I do get alot of reliable information. Fatigue is my biggest problem also. [ ] New Member Hi! My name is Marty and I somehow ran into your support group on the internet. I have had autoimmune hepatitis for 12 years. I have been on Prednisone since then, and Imuran for the past 5 years or so. I rarely have flare ups any more but I have lots of problems with opportunistic infections i.e. herpes, shingles, thrush, not to mention the side effects of long term Prednisone use i.e. weight gain hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored). I would say my biggest complaint by far is the fatigue. I hardly ever have a day that I feel great. I'm always dragging no matter how much sleep I get. I joined a health club in October, but got Strep Throat a week later, and after 3 courses of antibiotics, I am still sick and unable to even think about exercising. I'm due for LFT's next week-get them quarterly now. I only had one biopsy for diagnosis in the beginning, and nothing since. I have tried many times to go off the Prednisone but the ALT and AST always rise. I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Hoping to hear from someone, Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 HI Marty, I am new to this group as well. I was dx in 2002, but have had elevated liver enzyme tests for many years. No one was able to figure out what was wrong with me! I am on Imuron 150mg and Pred 5mg. This combination seems to keep my levels acceptable . Not normal. tho. This group is a G-d send! I have learned so much from everyone. Good luck and welcome to you! Sylvia a wrote: Welcome. I am fairly new to this group myself, I don't respond very often to the messages - but I do get alot of reliable information. Fatigue is my biggest problem also. ----- Original Message ----- From: Martha Christensen To: Sent: Monday, December 16, 2002 12:44 AM Subject: [ ] New Member Hi! My name is Marty and I somehow ran into your support group on the internet. I have had autoimmune hepatitis for 12 years. I have been on Prednisone since then, and Imuran for the past 5 years or so. I rarely have flare ups any more but I have lots of problems with opportunistic infections i.e. herpes, shingles, thrush, not to mention the side effects of long term Prednisone use i.e. weight gain hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored). I would say my biggest complaint by far is the fatigue. I hardly ever have a day that I feel great. I'm always dragging no matter how much sleep I get. I joined a health club in October, but got Strep Throat a week later, and after 3 courses of antibiotics, I am still sick and unable to even think about exercising. I'm due for LFT's next week-get them quarterly now. I only had one biopsy for diagnosis in the beginning, and nothing since. I have tried many times to go off the Prednisone but the ALT and AST always rise. I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Hoping to hear from someone, Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 whoops, I meant I was dx in 2000! My biggest complaints are fatigue and memory issues!!!!! Sylvia Sylvia Margolis wrote: HI Marty, I am new to this group as well. I was dx in 2002, but have had elevated liver enzyme tests for many years. No one was able to figure out what was wrong with me! I am on Imuron 150mg and Pred 5mg. This combination seems to keep my levels acceptable . Not normal. tho. This group is a G-d send! I have learned so much from everyone. Good luck and welcome to you! Sylvia a wrote: Welcome. I am fairly new to this group myself, I don't respond very often to the messages - but I do get alot of reliable information. Fatigue is my biggest problem also. [ ] New Member Hi! My name is Marty and I somehow ran into your support group on the internet. I have had autoimmune hepatitis for 12 years. I have been on Prednisone since then, and Imuran for the past 5 years or so. I rarely have flare ups any more but I have lots of problems with opportunistic infections i.e. herpes, shingles, thrush, not to mention the side effects of long term Prednisone use i.e. weight gain hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored). I would say my biggest complaint by far is the fatigue. I hardly ever have a day that I feel great. I'm always dragging no matter how much sleep I get. I joined a health club in October, but got Strep Throat a week later, and after 3 courses of antibiotics, I am still sick and unable to even think about exercising. I'm due for LFT's next week-get them quarterly now. I only had one biopsy for diagnosis in the beginning, and nothing since. I have tried many times to go off the Prednisone but the ALT and AST always rise. I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Hoping to hear from someone, Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Hi Marty Welcome! I'm sure you will find great support and advice on here. (midlands - england) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 > > From: Astonlsky@... > Date: Tue 17/Dec/2002 23:34 GMT > > Subject: Re: [ ] New Member > > Hi Marty > > Welcome! I'm sure you will find great support and advice on here. > > (midlands - england) > > hi, my name is anita i live in england and have just been diagnosed aih. i am on steroids and they want me to start chemo in january, can anyone please tell me what to expect. my doctor says its fatal if i dont repond to treatment. i just need to chat to people who have this disease as i feel very isolated and scared. please help anita rainbow1953@... _______________________________________________________________________ Freeserve AnyTime, only £13.99 per month with one month's FREE trial! For more information visit http://www.freeserve.com/time/ or call free on 0800 970 8890 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 > > From: " lisa m skowron " <lsmaxfax@...> > Date: Tue 17/Dec/2002 00:59 GMT > < > > Subject: RE: [ ] New Member > > Dear Marty, > > It's good to hear from you. Welcome! > > > > [ ] New Member > > Hi! > My name is Marty and I somehow ran into your support group on the > internet. > I have had autoimmune hepatitis for 12 years. I have been on Prednisone > since > then, and Imuran for the past 5 years or so. I rarely have flare ups > any more > but I have lots of problems with opportunistic infections i.e. herpes, > shingles, > thrush, not to mention the side effects of long term Prednisone use i.e. > weight gain > hypertension, depression, blood sugar problems, loss of hair, BRUISING > (my shins are permanently discolored). > I would say my biggest complaint by far is the fatigue. I hardly ever > have a day > that I feel great. I'm always dragging no matter how much sleep I get. > > I joined a health club in October, but got Strep Throat a week later, > and after 3 > courses of antibiotics, I am still sick and unable to even think about > exercising. > I'm due for LFT's next week-get them quarterly now. > I only had one biopsy for diagnosis in the beginning, and nothing since. > I have tried many times to go off the Prednisone but the ALT and AST > always rise. > > I have never spoken to or met one other single person with this disease! > I am so thankful I ran into your group. > I have a lot of experience with this illness, so maybe I will fit in. > > Hoping to hear from someone, > Marty > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 were in wyoming are you at I am in Wapiti Martha Christensen wrote: in Wyoming: Thanks for your response. I can't believe the amount of email. I have the time to read it right now but I'm sure I will become a "lurker" as well, at times. I it sure helpful to be able to compare notes with others! Marty [ ] Re: New Member > > Hi! > > My name is Marty and I somehow ran into your support group > on the internet. I am so thankful I ran into your group. > > I have a lot of experience with this illness, so maybe I will fit in. > > > > Hoping to hear from someone, Marty > > > Marty, > > Welcome to the group! I tend to lurk more than post, but I wanted > to welcome you. I have only been diagnosed with AIH for one > year, but I don't think that I could have coped as well as I have > without this group. Bless you for dealing with AIH on your own for > 12 years! Please share with us about your experiences. > > Glad to have you here. > > (in Wyoming) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 In a message dated 12/17/02 6:40:37 PM Eastern Standard Time, rainbow1953@... writes: hi, my name is anita i live in england and have just been diagnosed aih. i am on steroids and they want me to start chemo in january, can anyone please tell me what to expect. my doctor says its fatal if i dont repond to treatment. i just need to chat to people who have this disease as i feel very isolated and scared. please help Hi Anita, Have you had a liver biopsy? Do you have cirrhosis? I have always been told by my doctor that this disease is chronic, not fatal. She told me I will die with it, not from it. Do you have the option of talking to another doctor to see what their take on it is? I can understand your feelings, I felt the same way. I have only had my official diagnosis for 3 weeks. Knowledge is power, and learning all I could about this disease has eased my mind tremendously. This group is a great source of information and support. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 In a message dated 12/17/02 11:37:55 PM Eastern Standard Time, msaire@... writes: I am from Northern Michigan, USA How far North Marty? My grandparents are from St Ignace. I went to school at Central Michigan University in the middle of the state. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 > were in wyoming are you at I am in Wapiti > Wow, Dave, I can NOT believe that there is another Wyomingite in the group! What are the odds of that with our small population? I am in Riverton (central Wyoming). I see that you live near Cody. Do you go to Billings to see a specialist or do you go to Casper or is there a local specialist? Wyoming's population is so low that we have got to be the token patients with AIH. Are you a Wyoming native? (in Wyoming) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Debby: Thanks for the welcome. I was on 5 mg. of Prednisone daily for a long time, but I just increased it to 10mg. a couple days ago because I couldn't recover from persistent ?viral URI. I feel great today! I'll tell my doctor about it next week when I go in. This has worked for me in the past, i.e. increasing my Pred slightly if I get sick and it doesn't clear up right away. I've never gotten below 5 mg. maintenance. Marty [ ] New Member Hi! My name is Marty and I somehow ran into your support group on the internet. I have had autoimmune hepatitis for 12 years. I have been on Prednisone since then, and Imuran for the past 5 years or so. I rarely have flare ups any more but I have lots of problems with opportunistic infections i.e. herpes, shingles, thrush, not to mention the side effects of long term Prednisone use i.e. weight gain hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored). I would say my biggest complaint by far is the fatigue. I hardly ever have a day that I feel great. I'm always dragging no matter how much sleep I get. I joined a health club in October, but got Strep Throat a week later, and after 3 courses of antibiotics, I am still sick and unable to even think about exercising. I'm due for LFT's next week-get them quarterly now. I only had one biopsy for diagnosis in the beginning, and nothing since. I have tried many times to go off the Prednisone but the ALT and AST always rise. I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Hoping to hear from someone, Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Cheryl: Thanks for the response. Looking forward to talking with you.... Re: [ ] New Member In a message dated 12/15/02 10:01:04 PM Eastern Standard Time, msaire@... writes: I have never spoken to or met one other single person with this disease!I am so thankful I ran into your group.I have a lot of experience with this illness, so maybe I will fit in. Welcome Marty!Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 in Wyoming: Thanks for your response. I can't believe the amount of email. I have the time to read it right now but I'm sure I will become a " lurker " as well, at times. I it sure helpful to be able to compare notes with others! Marty [ ] Re: New Member > > Hi! > > My name is Marty and I somehow ran into your support group > on the internet. I am so thankful I ran into your group. > > I have a lot of experience with this illness, so maybe I will fit in. > > > > Hoping to hear from someone, Marty > > > Marty, > > Welcome to the group! I tend to lurk more than post, but I wanted > to welcome you. I have only been diagnosed with AIH for one > year, but I don't think that I could have coped as well as I have > without this group. Bless you for dealing with AIH on your own for > 12 years! Please share with us about your experiences. > > Glad to have you here. > > (in Wyoming) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Sylvia: I also had elevated liver enzymes for at least 5 years prior to diagnosis. Marty [ ] New Member Hi! My name is Marty and I somehow ran into your support group on the internet. I have had autoimmune hepatitis for 12 years. I have been on Prednisone since then, and Imuran for the past 5 years or so. I rarely have flare ups any more but I have lots of problems with opportunistic infections i.e. herpes, shingles, thrush, not to mention the side effects of long term Prednisone use i.e. weight gain hypertension, depression, blood sugar problems, loss of hair, BRUISING (my shins are permanently discolored). I would say my biggest complaint by far is the fatigue. I hardly ever have a day that I feel great. I'm always dragging no matter how much sleep I get. I joined a health club in October, but got Strep Throat a week later, and after 3 courses of antibiotics, I am still sick and unable to even think about exercising. I'm due for LFT's next week-get them quarterly now. I only had one biopsy for diagnosis in the beginning, and nothing since. I have tried many times to go off the Prednisone but the ALT and AST always rise. I have never spoken to or met one other single person with this disease! I am so thankful I ran into your group. I have a lot of experience with this illness, so maybe I will fit in. Hoping to hear from someone, Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Hey Dave......I am out for the holiday season....are you? Hope so! I don't know about you, but I NEED the rest. I think I have a couple of days left of sick leave.....dang....haven't been sick from colds or stuff....just from the meds! Debby [ ] Re: New Member > > Hi! > > My name is Marty and I somehow ran into your support group > on the internet. I am so thankful I ran into your group. > > I have a lot of experience with this illness, so maybe I will fit in. > > > > Hoping to hear from someone, Marty > > > Marty, > > Welcome to the group! I tend to lurk more than post, but I wanted > to welcome you. I have only been diagnosed with AIH for one > year, but I don't think that I could have coped as well as I have > without this group. Bless you for dealing with AIH on your own for > 12 years! Please share with us about your experiences. > > Glad to have you here. > > (in Wyoming) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Hi : I am from Northern Michigan, USA So great to be hearing from so many folks with the same illness. I can't believe I went all those years without talking with anyone!!! I'm so glad to be here. Marty Re: [ ] New Member > > > > Hi Marty > > > > Welcome! I'm sure you will find great support and advice on here. > > > > (midlands - england) > > > > hi, my name is anita i live in england and have just been diagnosed aih. i am on steroids and they want me to start chemo in january, can anyone please tell me what to expect. my doctor says its fatal if i dont repond to treatment. i just need to chat to people who have this disease as i feel very isolated and scared. please help > > anita > > rainbow1953@... > > > _______________________________________________________________________ > Freeserve AnyTime, only £13.99 per month with one month's FREE trial! > For more information visit http://www.freeserve.com/time/ or call free on 0800 970 8890 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Thanks [ ] New Member > > > > Hi! > > My name is Marty and I somehow ran into your support group on the > > internet. > > I have had autoimmune hepatitis for 12 years. I have been on Prednisone > > since > > then, and Imuran for the past 5 years or so. I rarely have flare ups > > any more > > but I have lots of problems with opportunistic infections i.e. herpes, > > shingles, > > thrush, not to mention the side effects of long term Prednisone use i.e. > > weight gain > > hypertension, depression, blood sugar problems, loss of hair, BRUISING > > (my shins are permanently discolored). > > I would say my biggest complaint by far is the fatigue. I hardly ever > > have a day > > that I feel great. I'm always dragging no matter how much sleep I get. > > > > I joined a health club in October, but got Strep Throat a week later, > > and after 3 > > courses of antibiotics, I am still sick and unable to even think about > > exercising. > > I'm due for LFT's next week-get them quarterly now. > > I only had one biopsy for diagnosis in the beginning, and nothing since. > > I have tried many times to go off the Prednisone but the ALT and AST > > always rise. > > > > I have never spoken to or met one other single person with this disease! > > I am so thankful I ran into your group. > > I have a lot of experience with this illness, so maybe I will fit in. > > > > Hoping to hear from someone, > > Marty > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Cheryl: I am from Traverse City, the Cherry Capital of the world! Marty Re: [ ] New Member In a message dated 12/17/02 11:37:55 PM Eastern Standard Time, msaire@... writes: I am from Northern Michigan, USAHow far North Marty? My grandparents are from St Ignace. I went to school at Central Michigan University in the middle of the state.Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Welcome Amy. Sorry you had so much problem with your biopsy. You will learn much here. Debby AIH 7/01 [ ] New Member > Hi all just wanted to say hello. I have just been diagnosed with > AIH and started on Prednisone last week. My biopsy went awful!!! I > am a nurse and I wasn't even prepared for it! I had significant > pain almost a week after the biopsy. I even had to go to the ER. > They had problems with my biopsy due to the fibrosis and could only > get one sample. I was also in the procedure room for 2 hours. They > have concluded that I have Stage 3 fibrosis but I am not so sure > about how accurate that was. Has your biopsies gone awful also. Do > they do conscious sedation on you and do you have many problems > after? They would not allow conscious sedation but I don't think I > can do it again if not. > > I have many more questions that just cannot be answered but by > people who have experienced it. > > I look forward to getting to know you all. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Hi Amy, Im Debbie, Im in the UK Im also a nurse with AIH, I understand your fatigue problems combined with working full time, unfortunately I don't have a magical answer. I was diagnosed over 20 years ago, managed to complete my nurse training and generally have worked ever since, apart from one or two 'blips'. Two years ago things got so bad that I was liver transplanted, I feel so amazingly different, there's no stopping me now, there are not enough hours in the day for me, although there are times when tiredness hits me but this is occasional rather than daily. This is a great place for information, I wish Id found it years ago! I wish you well with everything, Best wishes Debbie Ps I think there are a couple of other debbie's here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Amy, I am so sorry to hear of your poor experience with the biopsy. How was it performed? I work with cats, and do an average of 1-2 ultrasound guided fine-needle asperates per week. We monitor the cats for several hours to days later, and have not seen any side effects (this included bleeding with moderately elevated PTT's and ACT's...ie we haven't seen this complication. :-) ) Perhaps it was just the technique and technition diong the procedure. I hope you are feeeling better now. Kat [ ] New Member > Hi all just wanted to say hello. I have just been diagnosed with > AIH and started on Prednisone last week. My biopsy went awful!!! I > am a nurse and I wasn't even prepared for it! I had significant > pain almost a week after the biopsy. I even had to go to the ER. > They had problems with my biopsy due to the fibrosis and could only > get one sample. I was also in the procedure room for 2 hours. They > have concluded that I have Stage 3 fibrosis but I am not so sure > about how accurate that was. Has your biopsies gone awful also. Do > they do conscious sedation on you and do you have many problems > after? They would not allow conscious sedation but I don't think I > can do it again if not. > > I have many more questions that just cannot be answered but by > people who have experienced it. > > I look forward to getting to know you all. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 >Hello, just found the group by accident; I am a Chronic Pain sufferer >caused by degenerative disk problems in Cervical spine have had two >spinal fusions plus some added wires in cervical spine to hold it >together. I had these 2 fusions in 1993 and continued to work untill >April 2001 and had to retire because pain became to great to continue. >Home State TN. age 59.>> LOL Well, Jerry, welcome aboard and glad you found us by accident! We are an odd bunch, but we do all care about each other and the endless days of pain we all seem to have. I have lower lumbar probs after a fusion in 3/02, second surgery to fix Dr screw up 4/02. Nerve damage, muscle loss yadda yadda yadda <G> I still muddle thru my own business, but hey, I can set on my butt all day if I want to LOL So.....do you think you have another injury, or is the original one that's just never gotten better? I tell ya, I just don't know that I have a whole lot of trust/faith in modern medicine. From what the new Neuro has to say, the best I can hope for is to deal with the pain caused by the nerve damage. I still have another surgery to look forward to, to get the right side of my hardware out.....but I do feel better knowing this NS is doing it as opposed to the OS! LOLOL If it were him doing it, I'd leave it in there for eternity! Glad you joined us! Ask me about my new MSM lotion for aches/pains! http://www.scentsappeal.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi !! How did you cure yourself Kata?? I suffer from depression and am on meds for it.. I sure would like to get off them!! Take care!! Debbie Quote Link to comment Share on other sites More sharing options...
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