Guest guest Posted October 13, 1998 Report Share Posted October 13, 1998 In a message dated 10/12/98 2:20:46 AM Hawaiian Standard Time, braine@... writes: << Hi, my name is Becky Raine >> Welcome to the group Becky! Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1998 Report Share Posted November 1, 1998 Hi Becky, I am new to the list also. Actually I joined about 3 weeks ago right before we went on a three week vacation so I have been reading all my mail I have missed. Your note caught my eye because one of our stops on the way back from Mt. Rushmore, on the way to Lake Tahoe was Elko. What a really neat little town. Actually, it is a lot bigger than we thought. If you see someone's butt rolling down the street, it is mine. I lost it in one of the casinos there. I have had Ps for about 25 years now. I was diagnosed with PA in 87. I am on Methotrexate and Dolobid. The PA started when I couldn't even walk. I was so weak and tired I thought I had diabetes. Then my left index finger froze on me and it has been downhill since then. I have had 4 surgeries on my hands and am now on permanent disability. Such a lovely disease isn't it. I did find out also that high altitude and low humidty made my lesions flare up more. I was in agony, scratching away. They have calmed down since we have been back home. Welcome to the group and hope to talk with you soon. Angera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2001 Report Share Posted February 24, 2001 Hi! I am new to the group. I am a 49-1/2 year old wife & mother (6cats-no kids) and I live near Columbus Ohio. Hep B in 1970's (resolved) Hep C & Autoimmune HEP & fibrosis & cirrhosis diagnosed mid 1980's. No treatment, just observation, but having problems now & am going back to Cleveland Clinic in April. Am anxious & scared but I feel better knowing this group is here & that there is someone I can talk to. Debbie OH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 Jerry, your bio neglected to mention that you are an immense help and inspiration to us in this group. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 Jerry..... 58 (next Sunday) going on 25... I have 4 daughters ages 24.27,28 and 30 (jeezzz!) and4 grandchildren boy-1and1/2 month,girl-13 month. boy 5, girl-6, my wife died 1989 (from cirrhosis) at age 39, I tried to drink the grief away and ended up with alcoholic cirhosis for which I was transplanted in 1995, I haven`t had a drink in 7 yrs. and through the grace of God never again will (but doing it one day at a time) I take 2mgs. (bid.) Prograf to prevent rejection and 20 mgs. (bid.) Pepcid to counteract damage caused by varices and ensuing endoscopial sclerotherapy. In !997 ever increasing protein levels in by blood caused my Gastro. to send me to a hematologist/oncologist where thru bone marrow biopsy and other testing I was diagnosed with multiple myelma (bone marrow cancer) It is conceded that it was brought about from my weakened immune system due to the Prograf . I`m not being treated for it now, it is terminal and incurable but could take as much as 15-20 yrs. to kill me. Elevated LFTs in my monthly blood test in Sept. 2000 led my transplant team to fear rejection but an immediate biopsy revealed AIH instead . I was started on 40 mgs of Prednisone and monitered weekly Gradually my functions came down and so did my prednisone. I have been on 10 mgs for 2-3 mos. and they seem to want to keep me there. My last blood test was the best I`ve had in 8 years and I feel very good except for still tiring very easily. I had a recent bone scan which revealed osteopenia and am now taking Calcium with D and am starting 70mgs. Fosamax once weekly.I live with my 85 yr old mother who is in better health than I and am on SSI. In better times I did quite well as a electrical contractor. I graduated Ohio State `66 and attended grad school at U of Akron here in my hometown. None of my medical problems seems to have hindered my legendary long-windedness..sorry Jerry Fox Tx 95 AIH 00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 And I suspect a pain in the ass sometimes. Thanks Harper Jerry, your bio neglected to mention that you are an immense help and inspiration to us in this group. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 My name is Mari. I'm 20 and a Junior at Texas A & M Univ. I was diagnosed in May 1997 with AIH. I am taking 10mg pred. and 100mg Imuran now. My highest dosage of pred.was 60mg. I hated it. My worst side effect is the weight gain. I have to work pretty hard to keep my weight down. I feel fine now, I was pretty sick my freshman year here. Hopefully, everything will stay well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 I read Palmer's book, and I think it is really good. It's kind of scary though. I feel great right now, and I can't imagine that on the inside there's really something wrong. It makes it hard when I think about the things I shouldn't do, since I feel so normal. I feel like I'm missing out on a huge part of being in college but I guess I just have to live with it. Mari AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 > Hi my name is . I'm 39, married with 5 kids currently serving > the last 10 months of a 20 year Navy career in a permanant limited > duty status. I was originally diagnosed with Hep C in Jan.1998 a > biopsy showed mild fibrosis with no bridging. The Navy Hepatologist > really wanted me to start Interferon or combination Rebetron therapy. > After I did the research on that I decided the best treatment for me > was no treatment, at least until a better treatment came along. I was > doing ok except for fatigue, The Navy doctor just had me come in > every 6 months for labs. Then I transferred from San Diego to the > Seattle,WA. area in Jan. 2000. During the move I had what what I > thought was the 24 hr.flu. I got over that, but I started having > extreme fatigue and feeling nauseous on a daily basis. I had orders > to attend Oil Lab school in Pensacola,FL. before I was to report to > the U.S.S. Carl Vinson which is homeported in Bremerton ,WA. I > finished school and checked into the ship, spent 2 months working on > putting the Oil Lab together while the ship was in drydock. My health > started getting worse though, my wife noticed my skin taking on a > yellow tint. I had been in the process of plugging myself into the > health care system out here, and when the Navy Doctor started getting > my newest labs he started to s#$@. At first he accused me of abusing > drugs and alcohol, when I convinced him I was'nt. He ordered some > more blood tests, when those came back he called me back in and told > me that I have Chronic Active AIH. He told me he was not going to > hospitalize me that night, but started me on 60 mg Predisone. that > was in May 2000. Since then I have been weaned down to 10 mg > Predisone with 100 mg Imuran, my ALT's and AST's are back to normal. > My PTT has stayed high preventing any biopsy's, my Albumin was low > for a long time but is back up now. I have some Varcises in my > Esophagus and my rectum. So I am taking Enderol 80 mg slow release > capsules to keep my heart rate in the 60's as a precaution to prevent > any bleeding. I'm also taking Fosomax and calcium carbonate w/vit D. > I'm going to sign off for now. P.S this board is the best thing I've > found for being able to connect with others in the same boat as me, > thanks . P.S.S. I forgot to mention I am in the process of being evaluated by the University of Washington liver clinic since the Cirrosis diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi.. My name is Deb.. I'm 47 very happily married to my husband Steve, 23 yrs.. We have 2 grown sons, Dale 27 & 22... I found out that I have AIH last May.. Then from a liver biopsy in November I found out I have Cirrohsis.. Unfortunetly, I've not had good medical care.. So I switched Doctors a month ago..And he is sending me to a Hepatologist ( Liver Specialist ).. I go March 27th.. I was told by my new doctor that my liver is 80 % damaged by Cirrohsis.. I am 100 lbs overweight, and I'm suppose to lose that to help slow down more damage... But it's so hard.. Thanks for listening.. Hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 > Hello ALL I am a new menber Shelby 29 North Carolina no kids and divorced. I have AIH and was dx in October. I am on 20 mg Predinsone and 50 mg Imuran and various other meds. I am having a hard time accepting this disease. Any one with some helpfull hints to accept this?? Thanks much and I have enjoyed all the postings. Shelby > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Shelby.... just think that you could have inoperable brain cancer instead. Seriously as scary as it sounds to you the disease is controllable, be grateful for what you have, have faith and trust in a higher power and don`t worry over things you can`t control. Laugh whenever you can...it`s great medicine. (and bitch to whoever will listen...that`s why we`re here) Jerry > Hello ALL I am a new menber Shelby 29 North Carolina no kids and divorced. I have AIH and was dx in October. I am on 20 mg Predinsone and 50 mg Imuran and various other meds. I am having a hard time accepting this disease. Any one with some helpfull hints to accept this?? Thanks much and I have enjoyed all the postings. Shelby > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Dawn wrote: > > Hello ALL I am a new menber Shelby 29 North Carolina > no kids and divorced. I have AIH and was dx in > October. I am on 20 mg Predinsone and 50 mg Imuran and > various other meds. I am having a hard time accepting > this disease. Any one with some helpfull hints to > accept this?? Thanks much and I have enjoyed all the > postings. > > Shelby > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Shelby, I had trouble accepting that I had AIH when I was diagnosed also. I was only 17 so I hated it. I didn't think anything was really wrong and I never realized that it could be serious if I didn't treat it. I think that until I got to college I was really lazy about taking my meds and I would skip days or weeks, then I got pretty sick and was forced to face it and of course my parents were really angry that I would sayI had taken my medication when Ihadn't. Mari, AIH, Tx. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Mari.. It is hard to accept when you really dont look sick. Except for the swelling of my upper body..my neck is so think..I hate it..water pills are not helping. I take all the meds like I am suspose but some days it is hard making me take them. Cause I know in about 2 hours I am sick on my stomach. Tell me why I take meds that make me sick? So I will feel better..HHUUUMMMM Might want to rethink things here. Shelby __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2001 Report Share Posted March 2, 2001 Jerry, Have you seen Hannibal? Need I say more about brain damage? I can bitch now and it seems I am getting better every day with that one. Perfecting my technique. HAHA Thanks for the laugh. > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Shelby -- re water pills not helping. Your "swelling" is probably fat pads, deposited in a pattern typical to prednisone users. Water pills will not, of course, remove fat. My doctor told me not to try to lose the weight until my prednisone dosage went down, as the fat pads are pretty much unavoidable. Typical fat pad places include face, waistline, collarbones, and shoulderblades. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Hi Shelby, Where in NC are you? Where are you being treated? I live in lin county. My son Tommy is being treated at UNC. Let us know how you are doing. Debbie (Tommy's Mom) > [Original Message] > From: Dawn <shelbyncus@...> > < > > Date: 2/28/01 7:09:41 PM > Subject: Re: [ ] Roll Call > > > > Hello ALL I am a new menber Shelby 29 North Carolina > no kids and divorced. I have AIH and was dx in > October. I am on 20 mg Predinsone and 50 mg Imuran and > various other meds. I am having a hard time accepting > this disease. Any one with some helpfull hints to > accept this?? Thanks much and I have enjoyed all the > postings. > > Shelby > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 >I live in Fayettevile NC and I have a gastro dr here. I have seen Dr Fried in UNC. He was nice and just confirmed the dx. Is any one taking Paxil? I am having terrible tremors..is this normal and what is with the these little red pimples I am finding on my body. Has anyone had this? Shelby > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Shelby, My son was taking Paxil, and if I recall tremors are a possible side effect of that medication. Also, withdrawal symptoms of Paxil can be particularly bad, and can occur in only a day or two. He found that out when he had his wisdom teeth out and quit taking Paxil while on all of the medication for that. His doctor changed him to Prozac, which seems to have less side effects. If you do a search on the net for Paxil, I think there is quite a bit of info out there. Also, are you talking out little red spots - flat and blood red? I starting getting those about 6 weeks ago - everyone here said not to worry as long as you don't have a low platelet count, which can be caused by the Imuran. Take care, > > > >I live in Fayettevile NC and I have a gastro dr here. > I have seen Dr Fried in UNC. He was nice and just > confirmed the dx. Is any one taking Paxil? I am > having terrible tremors..is this normal and what is > with the these little red pimples I am finding on my > body. Has anyone had this? > > Shelby > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 On Tue, 6 Mar 2001 12:13:11 -0800 (PST), wrote: > > Is any one taking Paxil? I am > having terrible tremors..is this normal and what is > with the these little red pimples I am finding on my > body. Has anyone had this? > > Shelby Shelby, I spent the last 3 weeks coming off 60mg of paxil a day. I had the tremors but not the red bumps. I came off it because of the weight gain. Debra your gentle friend God Bless _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Shelby -- re tans. I believe my Imuran insert said to stay out of the sun. Re Ritalin -- I've been trying to find the posting from a couple of weeks back about Ritalin for fatigue in people with liver disease. Do you have any clues as to where I might find it? I'm not very good at searching the archives. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Thanks for the information. Termors are from the paxil but my doc say they will go away. The pimples I am having are all over my chest and face they remind me of pimples but they are not. Any idea what they are??? Shelby __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Dawn, Greetings from Greensboro! I have not seen you mention it, but are you on prednisone also? If you are, prednisone can cause " skin eruptions " ... they do look like pimples, but seem to last for awhile...eventually, they should start to fade. When I was initially on the higher doses of pred back in Nov, I broke out badly; once the dosage was reduced to 20, they started to go away. Then when things stopped working so wonderfully and my dosage was increased they came back. I have been on 30 mg since new years, and by the 10 of Jan I had a real beautiful breakout. They finally started to fade by mid Feb...guess my system finally adjusted. Just be patient, and treat your skin gently. nne > > Thanks for the information. Termors are from the > paxil but my doc say they will go away. The pimples I > am having are all over my chest and face they remind > me of pimples but they are not. Any idea what they > are??? > > > Shelby > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 , I go the lastest blood test back and they are all " normal " I have the red bumps for a while and then they go away. Really strange. Dr is not sure what they are but he says they are related to the liver problem. Can you tell me can you tan with prednisone and Imuran? I need a tan bad I think it will make a difference with the flushed face like prednisone gives me. Shelby __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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