Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Roxanne Thats great news keep it up !!! Mark G [ ] good news > > > > From: CREE8V1@... > > > > I just got back from my liver doc and my enzymes are still normal. I have > > now been off the prednisone for three months and am only on 50mgs of > > azathioprine. For the first time in years, I actually feel " normal " . I > > still need my daily nap but otherwise I feel good. My doctor and I hugged > > each other and we both feel really optimistic about my prognosis. > > > > Also, I wanted to share with you all that my husband, who is a video and > film > > producer, is volunteering to produce a documentary for the Midwest Organ > > Donation Organization. He shot the first segment on Saturday interviewing > > four soft tissue organ recipients. I am very proud of his efforts. > > > > Thank you to all of you who have helped me through this tough couple of > years > > to help me reach this point. The information and emotional outreach on > this > > list has really been my therapy for coping. > > > > Love, Roxanne > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 ---------- Roxanne, What a legend you are. I think that is the sentence we are all looking to write, a better future. Well done. I am so pleased for you. SueB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 In a message dated 09/06/1999 6:26:09 AM Eastern Daylight Time, spangs@... writes: << Another question: Those of you who bruise easily, does this happen when you're otherwise in remission? For awhile I bruised if I bumped lightly into anything then the problem seemed to stop. Now it's back. We just got back from a driving vacation and something so minor as leaning hard on the car seat to get something on the seat behind me would result in a bruise. I look like a battered wife and it's embarassing. Is this from Prednisone, Imuran, or both, or what? If anyone knows for sure, I'd like reassurance that it doesn't mean anything! Take care, Geri >> Hi Geri..I am glad to meet you. You are a wealth of knowledge and I hope to glean from your wisdom. About 2 years ago I learned of these dragons (AIH, PBC, HBP) I have. And have been to doctor after doctor. And for some reason they don't think I will benefit from Prednisone or Imuran. But I do have the brusing and for no reason. I can go to sleep at night and wake up looking like I had been in a fight and lost. LOL. I ask the doctor and was told, " Joan, it is all part of the diseases you have. Just be careful. " Sometimes I get tired of hearing that. I am in Stage one of Cirrhosis. Is this similar to the fatigue you feel? I go to bed tired, wake up tired, stayed tired all day. I do get up as soon as I wake, function until about noon then crash. I take a nap and am fine, well as fine as someone with all this can be, then by 10 I am exhausted. I have full care of my husband who is a parapalegic. We have learned to schedule his needs around me energy. I have a cleaning man who does the housework for me, so I am lucky there. Looking forward to hearing more from you. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 In a message dated 09/06/1999 6:26:09 AM Eastern Daylight Time, spangs@... writes: << Another question: Those of you who bruise easily, does this happen when you're otherwise in remission? For awhile I bruised if I bumped lightly into anything then the problem seemed to stop. Now it's back. We just got back from a driving vacation and something so minor as leaning hard on the car seat to get something on the seat behind me would result in a bruise. I look like a battered wife and it's embarassing. Is this from Prednisone, Imuran, or both, or what? If anyone knows for sure, I'd like reassurance that it doesn't mean anything! Take care, Geri >> Hi Geri..I am glad to meet you. You are a wealth of knowledge and I hope to glean from your wisdom. About 2 years ago I learned of these dragons (AIH, PBC, HBP) I have. And have been to doctor after doctor. And for some reason they don't think I will benefit from Prednisone or Imuran. But I do have the brusing and for no reason. I can go to sleep at night and wake up looking like I had been in a fight and lost. LOL. I ask the doctor and was told, " Joan, it is all part of the diseases you have. Just be careful. " Sometimes I get tired of hearing that. I am in Stage one of Cirrhosis. Is this similar to the fatigue you feel? I go to bed tired, wake up tired, stayed tired all day. I do get up as soon as I wake, function until about noon then crash. I take a nap and am fine, well as fine as someone with all this can be, then by 10 I am exhausted. I have full care of my husband who is a parapalegic. We have learned to schedule his needs around me energy. I have a cleaning man who does the housework for me, so I am lucky there. Looking forward to hearing more from you. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Hi Geri, Your fatigue problem sound exactly like mine, I'm really starting to dislike mornings! On the weekend I take naps, which is bad cause I lose so much of " my " time, but my body just stops me from doing anything other than nap. I feel like I need to build up all the strength I can to face the work week. I too bruise very easily, but I have all my life. My arms and legs especially look like someone has been beating on me. Glad to have you back from vacation, your letters are very informative! Take care, (AIH) Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Hi Geri, Your fatigue problem sound exactly like mine, I'm really starting to dislike mornings! On the weekend I take naps, which is bad cause I lose so much of " my " time, but my body just stops me from doing anything other than nap. I feel like I need to build up all the strength I can to face the work week. I too bruise very easily, but I have all my life. My arms and legs especially look like someone has been beating on me. Glad to have you back from vacation, your letters are very informative! Take care, (AIH) Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Roxanne, Congratulations on the good news! How long were your enzymes normal before you stopped taking Prednisone? Mine have been mostly normal for more than a year though there have been some blood abnormalities and a few problems. But, it didn't work for me to go off Prednisone. I'd love to go off the stuff, but I've heard that relapse within 6 months of stopping Prednisone is a possibility. Did your doctor mention that possibility? I'm thinking that they reach many conclusions about how things will work according to the initial reaction to the immunosuppressants. Those of us who have a vigorously positive response to the meds most likely are the lucky ones. My labs have never gone up, but they didn't drop down overnight either. They just gradually declined over a period of months until they stabilized about where they are now. I'm now considered in remission and my doctors seem to think I'll continue this way indefinitely. I hope they're right! But, about fatigue, I have some questions. I'm having considerably more fatigue than I was having. It's almost like someone pushes a button and I simply run down and don't recover until I've had 8-9 hours of sleep. I rarely nap though I sometimes fall asleep if I sit and relax to watch a video or read. Is this the meds? I've been taking them for so long, without even a change in dosage for months, but the fatigue is worse than it was. Also, I have a very difficult time getting up and around when I first wake up. In fact, I don't even try to get out of bed until about an hour after I wake because I feel too tired and weak. Then, gradually, it's like my system starts working again and I'm up and feeling fine. Is this similar to the fatigue you feel? Another question: Those of you who bruise easily, does this happen when you're otherwise in remission? For awhile I bruised if I bumped lightly into anything then the problem seemed to stop. Now it's back. We just got back from a driving vacation and something so minor as leaning hard on the car seat to get something on the seat behind me would result in a bruise. I look like a battered wife and it's embarassing. Is this from Prednisone, Imuran, or both, or what? If anyone knows for sure, I'd like reassurance that it doesn't mean anything! Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Geri Spang wrote: > > From: Geri Spang <spangs@...> > > But, about fatigue, I have some questions. I'm having considerably more > fatigue than I was having. It's almost like someone pushes a button and I > simply run down and don't recover until I've had 8-9 hours of sleep. I rarely > nap though I sometimes fall asleep if I sit and relax to watch a video or > read. Is this the meds? I've been taking them for so long, without even a > change in dosage for months, but the fatigue is worse than it was. Also, I > have a very difficult time getting up and around when I first wake up. In > fact, I don't even try to get out of bed until about an hour after I wake > because I feel too tired and weak. Then, gradually, it's like my system starts > working again and I'm up and feeling fine. Is this similar to the fatigue you > feel? > I used to love to get up early in the morning, drink a cup of coffee, listen to the birds, and sit outside in the morning cool air. Now it is more like you describe. I get up, eat my breakfast, read part of the newspaper, and then take a nap for another hour or so if I don't have anything I have to do in the morning. A couple things that I found that helped: - I try to go to bed and to sleep at a regular time. I have trouble sleeping sometimes and take Ambien. This way I get a good night's rest. I also try to avoid long naps as this also hurts my ability to sleep well at night. - I also have worked at not overdoing it. I tend to push myself and then collapse. When I came back from a strenuous vacation this summer, I slept for about 20 hours per day for a week. If I don't overdo it and get overly tired, I can avoid the blitzed feeling. > Another question: Those of you who bruise easily, does this happen when you're > otherwise in remission? For awhile I bruised if I bumped lightly into anything > then the problem seemed to stop. Now it's back. We just got back from a > driving vacation and something so minor as leaning hard on the car seat to get > something on the seat behind me would result in a bruise. I look like a > battered wife and it's embarassing. Is this from Prednisone, Imuran, or both, > or what? If anyone knows for sure, I'd like reassurance that it doesn't mean > anything! I can relate to the battered wife look, even though I am not married. I too bruise easily and have for years. Now I think this might have been an early sign of the liver disease, but when I asked my doctor at the time, I was told " Some people just bruise easily. " My doctor was very concerned when I was first diagnosed with AIH about my blood clotting ability. Since I am an active cyclist, he was concerned that I could lose a lot of blood in what would be a minor injury for someone else. One of the lab tests he orders for my normal labs is INR. This also gives a protime which relates to the clotting time I think. I think the bruises are related to the blood clotting ability. When I injure myself internally, normally the body would seal off the wound quickly and no blood would be lost. But for us, this is not the case. I think the liver produces the blood clotting factor. I also think that Imuran reduces the production of the clotting factor, for sure it reduces the platlets and white blood cell counts - that's what the warning about not using warfarin (sp?) in conjunction with Imuran relates to I think. Warfarin is a blood thinner and is used to reduce clotting. So, it seems the poor blood clotting comes from two places - Imuran and a liver that is no longer working at full capacity. Even though my INR and protimes are normal, I still bruise easily. I do not take aspirin because it too reduces the blood clotting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I thought I was loosing my mind for a while. I have been fatigued sooo easily. I am good for a few hours, then it's like I need a nap to get through the day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Good Morning MD, No Sweetie your not loosing your mind. With this albatross ya go bed tired, wake up tired, stay tired. The important thing is to not let your mind get tired. That will help keep you going. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 HI, Glad to hear from you again. Saw you online last night, but had so much mail to go through, that by the time I was done , you were gone. Thanks for the kind words. The tiredness is worse after working nights, and not sleeping well. Yes, I actually get paid for trying to sleep at night. (I take care of an elderly lady, who is in no danger at night, and I'm a light sleeper). The next day though after not sleeping well because of work, I'm wiped out the whole next day. Part of the job, though. This job will be ending any day now. Thanks for all your support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Geri, Does itching go away with prednisone treatment? Woke up today with terrible attack of itching. Usually itching is worse at night. At night I can take benedryl for it and the side effect of sleepiness from benedryl is welcome. But it is morning now and I can see that whole day will be shot because taking benedryl in daytime. J >From: Geri Spang <spangs@...> >Reply- onelist > onelist >Subject: Re: [ ] good news >Date: Wed, 08 Sep 1999 03:44:43 -0700 >MIME-Version: 1.0 >From errors-165537-6169-shireen42 Wed Sep 08 04:03:09 1999 >Received: from [209.207.164.249] by hotmail.com (2.1) with ESMTP id >MHotMailB99F8D6C011CD82197F1D1CFA4F90FE30; Wed Sep 08 04:03:09 1999 >Received: (qmail 31087 invoked by alias); 8 Sep 1999 11:02:58 -0000 >Received: (qmail 31076 invoked from network); 8 Sep 1999 11:02:57 -0000 >Received: from unknown (HELO mtiwmhc04.worldnet.att.net) (204.127.131.39) >by pop1.onelist.com with SMTP; 8 Sep 1999 11:02:57 -0000 >Received: from worldnet ([63.23.75.68]) by mtiwmhc04.worldnet.att.net >(InterMail v03.02.07.07 118-134) with SMTP id ><19990908110257.PSBP1503@worldnet> for < onelist>; Wed, 8 >Sep 1999 11:02:57 +0000 >Message-Id: <4.1.19990908032339.00975100@...> >X-Sender: spangs@... >X-Mailer: QUALCOMM Windows Eudora Pro Version 4.1 >In-Reply-<936650032.5281onelist> >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: Geri Spang <spangs@...> > >Hi Joan, >Curious that your doctors have decided that you have autoimmune diseases >yet >won't benefit from immunosuppressive drugs. Curious, but not surprising. >GI >doctors understand liver disease but they don't necessarily understand >autoimmunity. My first GI doctor, lucky for me, admitted freely that he >had no >idea how to treat AIH and prescribed NOTHING until I could see a >Hepatologist >who travels from San Francisco to Las Vegas once a month to see liver >transplant candidates. > >Have you seen a Hepatologist or mainly GI docs? Ever asked your doctors if >they've treated anyone else with an autoimmune liver disease? Prednisone >and/or Azathioprine are absolutely the primary treatment for autoimmune >liver >diseases if they can be tolerated. > >I've gone from end stage liver disease with stage IV cirrhosis to my >current >remission. It wasn't a miraculous overnight wonder, but my labs gradually >subsided over a period of months to where I am now, at a level where I'm >basically out of the woods. My Prednisone was reduced from the initial 40 >mgs >to the current 5 mgs. with great caution and supposedly I'll continue >taking >Prednisone for life. I've known from the onset that I'd take Imuran for >life. >I won't argue with success. The meds surely are what brought on the >remission >because I didn't pray and I didn't change my lifestyle except as much as >was >physically unavoidable. The fact that your docs aren't giving you >immunosuppressive drugs for an autoimmune disease sounds worrisome. Have >you >asked them why they think you won't benefit from the proven treatment for >this >condition? If you haven't already and if it's possible, I'd certainly >recommend that you at least have a consultation with a Hepatologist at a >major >medical center that does liver transplants and treats people with >autoimmune >liver diseases. There's a frightening amount of medical ignorance out >there, >especially when it comes to treating rare diseases. It's our lives they >are >playing with and why should they make us pay for their mistakes or failed >judgements about treatment? > >Even a brief rest or nap can be remarkably rejuvenating, I've found. I was >really dragging by the time we sat down to dinner tonight, but an hour >later I >felt okay again. Just that little bit of rest made a world of difference. >I >suppose I should rest more but I'm not good at taking it easy. You have >a >rough situation on your hands, taking care of your husband. My husband had >back surgery just awhile before I was diagnosed and again last September. >At >one point he and I wondered what we would do with both of us virtually >immobilized. But, he's gotten better and I've gotten worse as far as >fatigue >and pain goes, so life has a way of rounding things out, I guess. > >Take care, >Geri > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Hi Geri.. I have a doctors appointment next week...I am going to tell him I need to see a Hepatologist . Insurance is the deciding factor on referrals. The doctor don't make as much money off you when you see a lot of doctors. But from what I read here more should be done then what is being done and by dang it will be done. They tell me I have two life threatening diseases. I tell them life challenging. They tell me to keep thinking like that. Well, they can see the glass half empty, I prefer to see it half full. Why should I give up just because they are such numb dumbs. Hi J.. I took Mevacore for about 2 years for cholesterol. It did nothing for me. The doctors finally decided because of my Italian heritage it was high. I eat so healthy it isn't funny. On the herbs, again I stress, please check with your doctors. There are several good sites that deal with herbs and the benefits from them. I have found most stores that specialize in selling them are very informative and usually have written information on each herb. The library is another place to find infor on Herbs as an alternative medicine. It is working for me but what works for me might not work for everyone else.. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Hi Joan, Curious that your doctors have decided that you have autoimmune diseases yet won't benefit from immunosuppressive drugs. Curious, but not surprising. GI doctors understand liver disease but they don't necessarily understand autoimmunity. My first GI doctor, lucky for me, admitted freely that he had no idea how to treat AIH and prescribed NOTHING until I could see a Hepatologist who travels from San Francisco to Las Vegas once a month to see liver transplant candidates. Have you seen a Hepatologist or mainly GI docs? Ever asked your doctors if they've treated anyone else with an autoimmune liver disease? Prednisone and/or Azathioprine are absolutely the primary treatment for autoimmune liver diseases if they can be tolerated. I've gone from end stage liver disease with stage IV cirrhosis to my current remission. It wasn't a miraculous overnight wonder, but my labs gradually subsided over a period of months to where I am now, at a level where I'm basically out of the woods. My Prednisone was reduced from the initial 40 mgs to the current 5 mgs. with great caution and supposedly I'll continue taking Prednisone for life. I've known from the onset that I'd take Imuran for life. I won't argue with success. The meds surely are what brought on the remission because I didn't pray and I didn't change my lifestyle except as much as was physically unavoidable. The fact that your docs aren't giving you immunosuppressive drugs for an autoimmune disease sounds worrisome. Have you asked them why they think you won't benefit from the proven treatment for this condition? If you haven't already and if it's possible, I'd certainly recommend that you at least have a consultation with a Hepatologist at a major medical center that does liver transplants and treats people with autoimmune liver diseases. There's a frightening amount of medical ignorance out there, especially when it comes to treating rare diseases. It's our lives they are playing with and why should they make us pay for their mistakes or failed judgements about treatment? Even a brief rest or nap can be remarkably rejuvenating, I've found. I was really dragging by the time we sat down to dinner tonight, but an hour later I felt okay again. Just that little bit of rest made a world of difference. I suppose I should rest more but I'm not good at taking it easy. You have a rough situation on your hands, taking care of your husband. My husband had back surgery just awhile before I was diagnosed and again last September. At one point he and I wondered what we would do with both of us virtually immobilized. But, he's gotten better and I've gotten worse as far as fatigue and pain goes, so life has a way of rounding things out, I guess. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Have you had your playlets checked...Tyler and I have both had low playlets...Mine were so low that I bruised where the bandaid was (from lab work0..of course there was a bruise at the actual site of test also...If you just touched Ty's arm,leg etc he would get bruises...sometimes little sometimes huge... Hope this has helped...The docs just seemed to watch counts...mine is a little higher but Ty's is still low... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Barbara, I also love mornings. This is crazy, but during the summer months I get a great deal of pleasure out of stepping outside just after daylight, putting some seed in the bird feeder and watching the birds. But, I rarely see morning except when I've been up all night or if I have an unavoidable early appointment. I wish I could nap more easily. If I'd just sit down and let it happen, I probably could. I tend to doze off evenings after dinner when I'm trying to watch a TV show or a video or catch up on reading. At least I don't have insomnia anymore. By the time I get to bed I'm already half " out " and fall asleep, usually, within minutes. I tried Ambien but it didn't work for me when I was having major insomnia problems. Nothing did. I was also given Trazadone and Benadryl was suggested. I found that the Hydroxyzine I was taking for itching knocked me out but I didn't like the way it made me feel - too groggy, even in the mildest form. Actually, the insomnia that many of us get from liver disease seems to be resistant to everything. It was a nightmare I don't want to go through again. We do definitely pay for overdoing things. I thought I felt good during our vacation and certainly it wasn't an effort to ride in the car and share some of the driving, but just unpacking seemed to have the effect of a week of hard labor. I was totally wiped out for the first day. Now I'm back to " normal " , whatever that is. The bruises are puzzling. I have them in places where I know I haven't bumped into anything. Recently I just pinched my wrist fastening my watchband and ended up with a small purple bruise for a week. I also notice that scars last longer. I used to heal very rapidly and scars would disappear remarkably fast. No more. Scars from my lung biopsy are finally fading after more than a year. Have to wonder what's going on inside if the exterior is so fragile. Great answer you got from your doctor about the reason you're bruising. Sure, some people " just bruise easily " . But the question is, " Why???? " Either they think we're too dumb to understand complex answers or they don't want to take the time to tell us. I hate to think they don't know. I had an incident of severe bleeding almost a year before AIH diagnosis. A sharp butcher knife fell from the knife holder and cut a finger. Blood flew all over the kitchen. My poor husband ran around trying to mop up the blood and I finally yelled at him, " the hell with the floor, get something to stop the bleeding! " I didn't realize a finger could bleed that much. A year later, post AIH I slammed our deck door on a finger and the same thing happened. Blood everywhere. In the past I've been one of those people who rarely needed a Band-Aid, my blood clotted so quickly. Now even a thorn from our rose bushes causes way too much bleeding. Good thing I don't have a basically risky lifestyle. However, I'm in too much of a rush much of the time and tend to slam into doorways and tables, causing bumps, bruises and cuts that aren't necessary. I had an INR test (prothrombin time) a few months ago. I'm high normal. I don't know what's considered " high " but when my protime hit over 14 minutes (?) the hospital defrosted 5 units of plasma before they'd do my liver biopsy. One of the risks of Imuran is leukemia. I just re-read an article I'd downloaded about it, explaining why no one should be on more than 50 mgs. if possible. I suppose this would tie in with easy bleeding. I don't know what the leukemia risk factor is and I'd as soon not know. Without Imuran there were no odds in my favor, so any cancer risk is worth it to me. I take maybe 2 Bufferin a week, sometimes less often than that. Only if I have a headache. My husband had to have blood tests one time before they'd do a scheduled procedure because he had taken aspirin during the week prior. Think of all the generations that didn't know about the aspirin and bleeding risk! Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Joan, HMO doctors hate to do referrals. Sometimes the doctor's hands are tied and they risk being dropped from the HMO if they do too many referrals. Scary, isn't it? However, you have a rare and potentially life threatening condition that requires highly specialized care and there is pending legislation that will require a referral in a case like yours. In fact, laws might already exist in your state. You definitely need to see a Hepatologist who has treated AIH patients. Hold your ground until you get exactly what you need and be sure to verify that whoever you see has treated AIH. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 , I think that Prednisone does help the itching. My itching stopped a couple of months after I started taking it but definitely not right away. Either the Prednisone stopped the itching or the fact that my labs were improving caused the itching to end. We had a cat who had a severe flea allergy and our vet used to give him Prednisone for itching. Without it, the poor little guy was miserable all of the time. Sometimes I take Benadryl for hives. I still tend to have minor attacks of hives but easily controlled. If they start to spread, I take a Benadryl and I don't get sleepy if I take it during the day. For me, at least, it doesn't make me sleepy if I'm up and around. I hope the itching lets up for you. There seem to be a large variety of meds you can take to relieve it. Have you talked to your doctor about it? Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Joan, You go girl! Go tell that doctor just what the hog weighs! Get him all straightened up! Then come over here and get mine!!!! Love ya, (AIH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Joan, I am so impressed with your light hearted manner with all that you are dealing with. You take care of your husband and deal with the fatigue. I don't understand why the docs would not start you on some meds. Are your enzymes elevated? Roxanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 In a message dated 09/09/1999 10:53:25 PM Eastern Daylight Time, CREE8V1@... writes: << I don't understand why the docs would not start you on some meds. Are your enzymes elevated? >> Hi... Thank you for your kind words. As I have said before, watching my husband die of cancer and how he never complained or whined thru 5 years of pure " hello " he he he...I learned what was most important in this life. I try to see the good in everyone and everything. My enzyemes are 511, they were at 1299. My other counts are coming down too..I don't have the test results right here. But I will look them up...and post them. I am tired now, gonna hit the sheets and dream of something wonderful.. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Hello, I have a weird question to ask. Has anyone ever noticed their urine smelling funny during a time when they are in a flare up? Thanks Athie AIH Re: [ ] good news > From: FOXDIANA@... > > In a message dated 09/09/1999 10:53:25 PM Eastern Daylight Time, > CREE8V1@... writes: > > << I don't understand why the docs would not start you on some meds. Are > your > enzymes elevated? >> > Hi... > Thank you for your kind words. As I have said before, watching my husband > die of cancer and how he never complained or whined thru 5 years of pure > " hello " he he he...I learned what was most important in this life. I try to > see the good in everyone and everything. > > My enzyemes are 511, they were at 1299. My other counts are coming down > too..I don't have the test results right here. But I will look them up...and > post them. > > I am tired now, gonna hit the sheets and dream of something wonderful.. > > Have a good day, and remember...Laughter is the music of a happy heart, love > is it's sustenance. Sooooo...laugh a lot, it is healing. > > Joan, AIH, PBC, HBP > Florida > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 Yes, from the bilirubin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 Mine was strong and dark almost like tea. But that only lasted for a short while. Another reason I had on my list to go see the Dr. about before i was diagnosed. Lynn aih S Pickrel wrote: > From: " S Pickrel " <PICKREL@...> > > Hello, > I have a weird question to ask. Has anyone ever noticed their urine smelling > funny during a time when they are in a flare up? > Thanks > Athie AIH > Re: [ ] good news > > > From: FOXDIANA@... > > > > In a message dated 09/09/1999 10:53:25 PM Eastern Daylight Time, > > CREE8V1@... writes: > > > > << I don't understand why the docs would not start you on some meds. Are > > your > > enzymes elevated? >> > > Hi... > > Thank you for your kind words. As I have said before, watching my husband > > die of cancer and how he never complained or whined thru 5 years of pure > > " hello " he he he...I learned what was most important in this life. I try > to > > see the good in everyone and everything. > > > > My enzyemes are 511, they were at 1299. My other counts are coming down > > too..I don't have the test results right here. But I will look them > up...and > > post them. > > > > I am tired now, gonna hit the sheets and dream of something wonderful.. > > > > Have a good day, and remember...Laughter is the music of a happy heart, > love > > is it's sustenance. Sooooo...laugh a lot, it is healing. > > > > Joan, AIH, PBC, HBP > > Florida > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 Mine was strong and dark almost like tea. But that only lasted for a short while. Another reason I had on my list to go see the Dr. about before i was diagnosed. Also that is not a weird question. We were talking about that the other day. Pee and poop watching. One of the first ways you can tell something is wrong. With animals too. We raise dachshund dogs, and have raised other animals. That is one thing you check all the time to make sure everything is running smoothly! Lynn aih S Pickrel wrote: > From: " S Pickrel " <PICKREL@...> > > Hello, > I have a weird question to ask. Has anyone ever noticed their urine smelling > funny during a time when they are in a flare up? > Thanks > Athie AIH > Re: [ ] good news > > > From: FOXDIANA@... > > > > In a message dated 09/09/1999 10:53:25 PM Eastern Daylight Time, > > CREE8V1@... writes: > > > > << I don't understand why the docs would not start you on some meds. Are > > your > > enzymes elevated? >> > > Hi... > > Thank you for your kind words. As I have said before, watching my husband > > die of cancer and how he never complained or whined thru 5 years of pure > > " hello " he he he...I learned what was most important in this life. I try > to > > see the good in everyone and everything. > > > > My enzyemes are 511, they were at 1299. My other counts are coming down > > too..I don't have the test results right here. But I will look them > up...and > > post them. > > > > I am tired now, gonna hit the sheets and dream of something wonderful.. > > > > Have a good day, and remember...Laughter is the music of a happy heart, > love > > is it's sustenance. Sooooo...laugh a lot, it is healing. > > > > Joan, AIH, PBC, HBP > > Florida > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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