Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 " I have HCV and treated for 88 weeks. 51 of those were 180 mikes (mcg) of Pegasys (weekly) and 1000mg of ribavirin (per day) -- the other 37 were 90 mikes of peginterferon alone. I was going for the SVR and reversal of fibrosis (I was stage 3 entering the treatment). I tested undetectable by week 14 and my ALT/AST normalized earlier. I was undetectable throughout my 88 week treatment. Within three months of the cessation of the medication I relapsed. I also may have developed AIH (autoimmune hepatitis) along the way, due to the interferon (I guess). My latest biopsy indicated I did reverse damage, thanks to the antifibrotic properties of interferon and I've gone back to stage 2. The AIH tests were all negative but the biopsy showed a certain type of plasma cells which indicate AIH -- the tip-off for the doc on the AIH was a slight malar rash on my face about halfway into treatment. I see the doc in March to see what the next step is. He won't put me back on interferon because that could make the AIH flare and vice versa as far as AIH treatment goes. " Hello -am not brilliantly up on Hep C treatment -but have a couple of friends who have had treatment and one who is going to have treatment.I have AIH and PBC -the AIH -I believe is a result of treatment for growth in my womb -the drug treatment exacerbated the PBC and resulted in AIH too.I had to have tests for numerous other things before I could have steroids.I was diagnosed Stage 4-and yes the staging does refer to scarring etc and 4 is cirrhosis.Anyway -welcome to the group.-what does SVR mean? Louise PBC?AIH Stage 4 Newcastle upon Tyne England Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Also, I found cool showers and loose-fitting knit silk unisex nightshirts helped allay itching. In the U.S., a good source for the nightshirts is WinterSilks. Cornstarch patted on lightly sometimes helped; baby dusting powder/talc was far too irritating. At times, ice packs worked. As an alternative to scratching, placing a fan to blow on one's skin helps. I bought a lambswool duster with a long handle and patted when I wanted to scratch. In the U.S., a powder called GoldBond is sold to relieve itching. I tried it once and found it created a burning sensation that was quite painful, even after repeated showers. But, some like it. Best wishes. H. In a message dated 1/7/07 2:06:25 PM, flatcat9@... writes: > Have you tried Atarax for itching? > Harper > > In a message dated 1/7/07 4:56:48 AM, lcne16577@blueyondelcne165 writes: > > > I do have itching at night but it is manageable. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Reading with interest comments re liver injury which is drug-induced. My own fears of antibiotics came about because of severe reaction to amoxicillin so started researching on the web. I found an interesting article posted by Cleveland Clinic you might wish to refer to. Here's the link: _www.clevelandclinicmeded.com/DISEASEMANAGEMENT/gastro/intrahepatic/intr_ (http://www.clevelandclinicmeded.com/DISEASEMANAGEMENT/gastro/intrahepatic/intr) .. I found it by Googling Intrahepatic Cholestatic Liver Disease. It is an eye-opener and I hope it is pertinent and useful to you. Lorna, Vancouver, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 I found the article thanks going to take into my dr. even though it is 02 Lorna3250@... wrote: Reading with interest comments re liver injury which is drug-induced. My own fears of antibiotics came about because of severe reaction to amoxicillin so started researching on the web. I found an interesting article posted by Cleveland Clinic you might wish to refer to. Here's the link: _www.clevelandclinicmeded.com/DISEASEMANAGEMENT/gastro/intrahepatic/intr_ (http://www.clevelandclinicmeded.com/DISEASEMANAGEMENT/gastro/intrahepatic/intr) .. I found it by Googling Intrahepatic Cholestatic Liver Disease. It is an eye-opener and I hope it is pertinent and useful to you. Lorna, Vancouver, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 I contracted my AIH from interferon -- 88 weeks of it. That is what the docs say. It is strange because my ANA tests are always negative. Happy New Year to all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Yes I found myself doing the same thing. I know it is ridiculous, but what else can you do. People do scare easily! _____ From: [mailto: ] On Behalf Of flatcat9@... Sent: January 9, 2007 12:45 PM Subject: Re: [ ] Re:drug induced AIH It might be good to use the term " developed " rather than " contracted " AIH in speaking with people who don't know much about AIH. To me, the term " contracted " has overtones of contagion. Perhaps only I have that reaction to the word; I could be wrong on this. When I'm around non-medical people, or relatively unsophisticated medical people, I avoid using the word " hepatitis " before I say " autoimmune disorder that attacks the liver " . You know that " uh, see you later " panicked look that people sometimes get when faced with the idea of contagious hepatitis! It's understandable. harper In a message dated 1/9/07 9:01:30 AM, scott_gaulke@ <mailto:scott_gaulke%40hotmail.com> hotmail.com writes: > > > > I contracted my AIH from interferon -- 88 weeks of it. That is what the docs > say. It is strange because my ANA tests are always negative. > > Happy New Year to all! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Call me sick but I actually get a perverse thrill out of seeing the reactions of strangers to telling them I have HCV and AIH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Hi Taru-Mari, I've been a member of this group since 2002 when I was diagnosed with AIH. I'm usually just a lurker and read the daily emails but this is something I felt I needed to respond to. My Hep Dr. (I like to refer to him as my guardian angel) gives me Zithromax if I ever start to come down with a cold. Hardly ever happens-but every once in a while I do get one since I travel for a living(flight-attendant). I am very susceptible to coming down with illnesses. He gives me Zpak (Zithromax)to take with me on the road along with Levaquin in case I get one of those awful UTI's while traveling. He always makes me take extra precautions because I do travel all over the world and medications are not the easiest to come by in some parts. Let me tell you something, I trust this man with my life and he always looks out for me and would NEVER , EVER give me anything that might even have the slightest possibility of any damage to me. When he first saw me 4 years ago, I was pretty much on my death bed and had been admitted into the hospital.no one knew what was wrong with me at the time.(Saw so many Drs. That I lost count) I was a human banana with acne all over my body and looked like I had gotten pregnant over night(lovely ascites). This man, whom I'd never seen before in my life, promised me he would have my diagnosis by the end of the day as he held my hand and tried to stop me from crying in my hospital bed. And you know what, he delivered on his promise and has been my guardian angel ever since. He is if anything overly cautious with me, so I feel I can say in complete confidence that Zithromax should not have any effect on AIH patients because if it did, he would never prescribe it to me. How many people can say that they have their hep's cell number? I know I am very, very lucky and I always feel so bad when I read the awful things that people in this group go through. (The nightmare quacks that are out there just eat me up inside and I feel so, so awful for some of you.) That's why I don't usually write or say anything in this group because I don't want to sound too lucky or blessed when I know that so many of you are having such a hard time. But , I can say with complete confidence that my hep would never take any chances with a drug that might do any damage to my liver. I've had perfect numbers for the past 3 years now and am taking 2 mg Prednisone and 50mg Imuran daily. (I'm knocking on wood as I type.) All my best to you and your son, Schreiber AIH 2002 From: [mailto: ] On Behalf Of flatcat9@... Sent: Monday, January 15, 2007 1:20 PM Subject: Re: [ ] Re: drug induced AIH You may wish to Google " Zithromax liver " . I did so and found connections, including one involving fightingforyou.com and a lawsuit against Pfizer. Apparently Zithromax (like many other drugs, to be fair), can have a negative effect on some people's livers. H. In a message dated 1/15/07 1:11:40 PM, tarumaritalaslahti@... <mailto:tarumaritalaslahti%40> writes: > > Hi, > > I have been a silent member in this list for a while. I am from > Finland in the Northern part of Europe (almost the top of the world) > and I have had an interest in liver diseases since 2003 when my then > 6-year-old son suddenly became very sick and was later diagnosed to > have PSC (first the diagnosis was AIH for a while). > > The other day I spotted your discussion on drug-induced liver disease > and around the same time there was a note from sponsors at the > end of the page of an antibiotic called Zithromax being linked to > liver disease. My son was rarely sick before the diagnosis of AIH/PSC > except for the frequent ear infections that he had since he was 9 > months old. And a LOT of the times the medication was Zithromax, > partly because it worked so well and partly because it was easy: just > administered on three days and it cured the infection every time (not > all other antibiotics did). But now I wonder how wise this was. Who > knows if it was the cause that triggered the liver disease. > > Have any of you been prescibed Zithromax before being diagnosed with > your liver disease? I hope not, it would put my mind at ease. But if > you have, or if you know of someone who has taken this medication, it > would be interesting to hear about it. > > Taru-Mari > mother of a 9-year-old son, PSC 2003 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Hi , Thanks so much for your reassuring message! It is good to hear of your experiences with Zithromax. It is also great to hear you are doing fine with the medication you have now. I am sure that it is not bad news for anyone, even if everyone's situation is not as good. Great to hear that you are able to continue with your work travelling all around the world, too. The work of a flight attendant is not as easy as it seems, with the odd working hours etc (my sister also worked as a flight attendant earlier). We are also lucky in the respect that my son's PSC is monitored quite frequently nowaways, and he seems to be doing ok with the help of azathioprine, budenisode, calcium, vitamin D, urso and hydcocortisone (quite a load of medicine). In the MRI his liver disease is progressing but not very fast, as far as I understand. As long as he is feeling ok, going to school and fit enough to excercise to some extent, things are fine. I am grateful for each day, week, month and year that he can lead a 'normal' schoolkid's life. Thanks again for your message and all the best to you! Taru-Mari mother of a 9-year old son with PSC since 2003 > > Hi Taru-Mari, > > I've been a member of this group since 2002 when I was diagnosed with AIH. > I'm usually just a lurker and read the daily emails but this is something I > felt I needed to respond to. My Hep Dr. (I like to refer to him as my > guardian angel) gives me Zithromax if I ever start to come down with a cold. > Hardly ever happens-but every once in a while I do get one since I travel > for a living(flight-attendant). I am very susceptible to coming down with > illnesses. He gives me Zpak (Zithromax)to take with me on the road along > with Levaquin in case I get one of those awful UTI's while traveling. He > always makes me take extra precautions because I do travel all over the > world and medications are not the easiest to come by in some parts. > > > > Let me tell you something, I trust this man with my life and he always > looks out for me and would NEVER , EVER give me anything that might even > have the slightest possibility of any damage to me. When he first saw me 4 > years ago, I was pretty much on my death bed and had been admitted into the > hospital.no one knew what was wrong with me at the time.(Saw so many Drs. > That I lost count) I was a human banana with acne all over my body and > looked like I had gotten pregnant over night(lovely ascites). This man, > whom I'd never seen before in my life, promised me he would have my > diagnosis by the end of the day as he held my hand and tried to stop me from > crying in my hospital bed. And you know what, he delivered on his promise > and has been my guardian angel ever since. He is if anything overly > cautious with me, so I feel I can say in complete confidence that Zithromax > should not have any effect on AIH patients because if it did, he would never > prescribe it to me. How many people can say that they have their hep's cell > number? I know I am very, very lucky and I always feel so bad when I read > the awful things that people in this group go through. (The nightmare > quacks that are out there just eat me up inside and I feel so, so awful for > some of you.) That's why I don't usually write or say anything in this > group because I don't want to sound too lucky or blessed when I know that so > many of you are having such a hard time. But , I can say with complete > confidence that my hep would never take any chances with a drug that might > do any damage to my liver. I've had perfect numbers for the past 3 years > now and am taking 2 mg Prednisone and 50mg Imuran daily. (I'm knocking on > wood as I type.) > > > All my best to you and your son, > > > Schreiber > > AIH 2002 Quote Link to comment Share on other sites More sharing options...
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