Guest guest Posted April 27, 1999 Report Share Posted April 27, 1999 Sue B. , That is great news! And I'm glad you had a good day! Take Care, Dianne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 Sue, Congratulations on your good biopsy results. Does your doctor think that you're in remission, or going into it? I didn't go into remission overnight. Things just gradually improved. I hope it works out that way for you too. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 Geri, My doctor, well I am not very happy with her at the moment. She rang me at home and told me the " Good " results of the biopsy, and told me that it is starting to look like I am going into remission. Long way to go but this is the good part she said. Then I spoke to my GP who got a letter from the Liver specialist that told her I was stage IV and although I am doing well at the moment the future is not predictable and that I could progress to chorisis at any given time. She is attempting to lower the dosage of prednisone from 30 to 25 at present. Is there anyone out there that takes both prednisone and cyclosporine, I have a couple of questions if there is. Geri, have you ever heard of a case of AIH affecting the thyroid or giving you shingles or having an affect on the muscles of the heart and/or lungs. My last stay in hospital showed that my lungs are being affected by the fluid in my abdomen and the diaphragm not being able to extend to where it should, hence there is fluid in the base of the lungs. Breathing is difficult. The fluid build up in my legs and abdomen, they tell me, could be a result of the heart muscles being affected from the prolonged use of prednisone. Have you heard of any similar cases and what the results were. I have to go for more test, thyroid and heart, this coming week. Hope you are well. It was excellent news to hear that you are still on " The List " . I fully understand what you are talking about, I felt that way about having the biopsy and actually knowing what was going on. Great News. SueB. ---------- > From: Geri and Bob Spang <spangs@...> > onelist > Subject: [ ] Re: RETURN THANKS > Date: Thursday, 29 April 1999 19:52 > > From: Geri and Bob Spang <spangs@...> > > Sue, > Congratulations on your good biopsy results. Does your doctor think that > you're in remission, or going into it? I didn't go into remission > overnight. Things just gradually improved. I hope it works out that way > for you too. > > Take care, > Geri > > ------------------------------------------------------------------------ > Looking for an easy, effective way to research an important topic? > > Joining a ONElist community is your answer. > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to -subscribeonelist > 2.) To UNsubscribe send to -unsubscribeonelist > 3.) Digest e-mail format send to -digestonelist > 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Sue, I have the impression that thyroid problems can be related to either prednisone or liver disease. Not sure which, but the endocrinologist I saw recently did run some thyroid tests. I don't know about shingles and AIH, but I do have a friend who has Lupus, another autoimmune disease, and she recently had a major bout with shingles. I always thought that shingles are brought on by stress, but yesterdays assumptions are todays misconceptions sometimes. Sue, I went through the same thing with both of the Hepatologists I see. Even before I went into remission they both acted like my condition is " no problem. " Then, I had a couple of incidents and they seemed to change their attitudes. I wonder if it's wishful thinking. Something else that occurs to me often: AIH is a relatively rare disease and doesn't seem to react the same with any two people. I'm not sure that even the Hepatologists know exactly what it might do. They are far more apt to understand other liver diseases because they see so much more of them. Also, I'm not certain they totally put together the many issues that arise from prednisone and imuran or other immunosuppressive drugs. The fact is, AIH is incurable so if we have it, we're always going to have it. What we can hope is that it can be controlled by medication and that if all goes well, we might even go into remission. However, someone told me that no matter what, there WILL be a gradual deterioration over time. It could take many years, but ultimately, that deterioration is going to happen. For someone who is young, in their 20's or 30's, that can be scary. For someone like me, I figure that time's probably on my side. Did I mention that my Hepatologist is from Melbourne, by the way? I looked his name up on Internet and have found papers he's written about hepatitis, which indicates to me that Australia is a country where there's strong awareness of AIH and it's treatment. About the heart and lungs, I haven't had anyone tell me that AIH can affect them, but I've had problems with both. I developed a spot on one lung and had to have a lung biopsy (negative for cancer.) I also have considerable shortness of breath sometimes. In addition, during pre-transplant evaluation, they found some kind of a problem with my heart. I have resisted having an angiogram so I don't know what that's all about. Even without taking corticosteroids, there is fluid retention that goes with AIH and liver disease in general because the liver isn't functioning properly thus affecting other organs. The more " ill " I've been, the worse the shortness of breath has been. Your doctors seem to at least have theories of why you're having heart and lung problems. I've been run through so many tests it's ridiculous but no one has speculated that fluid could be causing some of the problems I've had. I also have periodic fluid buildup in my legs. I was shocked the first time I got a look at myself in the mirror and my legs didn't look like they belonged to me! I have an ongoing problem with ascetis and would have more problem with pedal edema if I didn't take so many diuretics. It seems like someone posted something about heart problems related to AIH a few months ago. Maybe they're still around and will offer more information. Ascetis (abdominal fluid), incidentally, is a condition that exists when you have liver disease, whether you're taking prednisone or not. It was asceitis and pedal edema that led to my diagnosis in the first place and I wasn't taking any medications of any kind at the time. It sounds like there are still a lot of questions that need to be answered before you can fully understand your condition. How can you be stage IV and still be okay? But then, I was level 3-4 with stage IV cirrhosis more than a year ago, and I'm in remission, so you have to wonder what DOES make a difference. Keep us posted about what they find out from your tests. I think we all are learning more and more about our own disease through the information we're sharing with each other. Too bad we don't have an occasional specialist who will step in and set us straight when we head off in the wrong direction. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Geri, I have PBC. I notice when I feel the severe fatigue taking control of me and I feel weak I have a shortness of breath or a faster breathing. I was wondering if you notice when this is happening to you? I was misdiagnosed once and I think I have the PBC for sure but one never knows. Atleast my biopsy says I do. Jan in NT [ ] Re: RETURN THANKS >From: Geri and Bob Spang <spangs@...> > >Sue, >I have the impression that thyroid problems can be related to either >prednisone or liver disease. Not sure which, but the endocrinologist I saw >recently did run some thyroid tests. I don't know about shingles and AIH, >but I do have a friend who has Lupus, another autoimmune disease, and she >recently had a major bout with shingles. I always thought that shingles >are brought on by stress, but yesterdays assumptions are todays >misconceptions sometimes. > >Sue, I went through the same thing with both of the Hepatologists I see. >Even before I went into remission they both acted like my condition is " no >problem. " Then, I had a couple of incidents and they seemed to change >their attitudes. I wonder if it's wishful thinking. Something else that >occurs to me often: AIH is a relatively rare disease and doesn't seem to >react the same with any two people. I'm not sure that even the >Hepatologists know exactly what it might do. They are far more apt to >understand other liver diseases because they see so much more of them. >Also, I'm not certain they totally put together the many issues that arise >from prednisone and imuran or other immunosuppressive drugs. > >The fact is, AIH is incurable so if we have it, we're always going to have >it. What we can hope is that it can be controlled by medication and that >if all goes well, we might even go into remission. However, someone told >me that no matter what, there WILL be a gradual deterioration over time. >It could take many years, but ultimately, that deterioration is going to >happen. For someone who is young, in their 20's or 30's, that can be >scary. For someone like me, I figure that time's probably on my side. Did >I mention that my Hepatologist is from Melbourne, by the way? I looked his >name up on Internet and have found papers he's written about hepatitis, >which indicates to me that Australia is a country where there's strong >awareness of AIH and it's treatment. > >About the heart and lungs, I haven't had anyone tell me that AIH can >affect them, but I've had problems with both. I developed a spot on one >lung and had to have a lung biopsy (negative for cancer.) I also have >considerable shortness of breath sometimes. In addition, during >pre-transplant evaluation, they found some kind of a problem with my heart. > I have resisted having an angiogram so I don't know what that's all about. > Even without taking corticosteroids, there is fluid retention that goes >with AIH and liver disease in general because the liver isn't functioning >properly thus affecting other organs. The more " ill " I've been, the worse >the shortness of breath has been. Your doctors seem to at least have >theories of why you're having heart and lung problems. I've been run >through so many tests it's ridiculous but no one has speculated that fluid >could be causing some of the problems I've had. I also have periodic fluid > buildup in my legs. I was shocked the first time I got a look at myself >in the mirror and my legs didn't look like they belonged to me! I have an >ongoing problem with ascetis and would have more problem with pedal edema >if I didn't take so many diuretics. It seems like someone posted something >about heart problems related to AIH a few months ago. Maybe they're still >around and will offer more information. Ascetis (abdominal fluid), >incidentally, is a condition that exists when you have liver disease, >whether you're taking prednisone or not. It was asceitis and pedal edema >that led to my diagnosis in the first place and I wasn't taking any >medications of any kind at the time. > >It sounds like there are still a lot of questions that need to be answered >before you can fully understand your condition. How can you be stage IV >and still be okay? But then, I was level 3-4 with stage IV cirrhosis more >than a year ago, and I'm in remission, so you have to wonder what DOES make >a difference. > >Keep us posted about what they find out from your tests. I think we all >are learning more and more about our own disease through the information >we're sharing with each other. Too bad we don't have an occasional >specialist who will step in and set us straight when we head off in the >wrong direction. > >Take care, >Geri > >------------------------------------------------------------------------ >Did you know that ONElist now offers the richest set of >group communications tools on the Internet? > >Check out our homepage for details on these new tools! >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Jan, I was originally diagnosed with PBC but it was revised to AIH. I keep hearing that the two conditions can crossover but I am hoping that isn't going to happen to me. I've never had jaundice, which can happen with AIH but isn't jaundice more common with PBC? I was told that I probably had AIH for several years. Maybe many years, before I was eventually diagnosed. The first symptoms that are suspicious go all the way back to 1979. The symptoms then were more indicative of an autoimmune process of some sort but they were so vague and tended to come and go so none of them were pursued in depth. Increasingly over the past 3-4 years, I've had a problem with shortness of breath. At the same time, I was noticing that I had abnormal puffiness - bloating, I thought, but for no apparent reason. I asked doctors about it and they patted me on the head and placated me with comments like about how women of " a certain age " tend to develop a tummy. The shortness of breath became a part of my life and I finally was referred for pulmonary function tests. Believe it or not, they were normal. How someone can be so short of breath that strangers would notice it on the phone, yet now show up in tests, beats me. It wasn't really debilitating, though, and strangely, I had as much stamina as I've ever had. However, when I became seriously ill just before and after I was diagnosed with AIH, the shortness of breath became a major problem. I'd become so winded from just walking across a room I'd have to sit to catch my breath. At the same time, I had major ascetis and pedal and leg edema. Hard to believe there wasn't edema in other parts of my body as well. With radically increased diuretics, the shortness of breath almost disappeared. However, edema is creeping back into my life, partly because I'm back on a higher level of prednisone, and so is the shortness of breath. I think that the edema brings on much of the fatigue. I can't help worrying if this might be doing some heart damage. I know that edema caused my Mom's chronic problem with heart failure. Not something I want to worry about, but you have to consider possibilities when you don't get the answers you need. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 Geri, How are you? How is your hubby? Better I hope. When you had your shortness of breath what tests did they do on your heart? I am set down for an echocardiograph for next Tuesday. The edema is still present and that apparently worries them. Apparently because of the increased fluid in the abdomen my lungs are not working to capacity. The bottom part is not working because the diaphragm isn't able to expand because of the fluid. Vicious circle isn't it. The drugs to keep the liver functions down give you all this added grief. How goes it with dropping the prednisone? I am starting to take 25mg instead of 30 mg now. Looking forward to dropping right off (I wish). Take care. Sue B. ---------- > From: Geri and Bob Spang <spangs@...> > onelist > Subject: [ ] Re: RETURN THANKS > Date: Monday, 3 May 1999 20:28 > > From: Geri and Bob Spang <spangs@...> > > Jan, > I was originally diagnosed with PBC but it was revised to AIH. I keep > hearing that the two conditions can crossover but I am hoping that isn't > going to happen to me. I've never had jaundice, which can happen with AIH > but isn't jaundice more common with PBC? > > I was told that I probably had AIH for several years. Maybe many years, > before I was eventually diagnosed. The first symptoms that are suspicious > go all the way back to 1979. The symptoms then were more indicative of an > autoimmune process of some sort but they were so vague and tended to come > and go so none of them were pursued in depth. > > Increasingly over the past 3-4 years, I've had a problem with shortness of > breath. At the same time, I was noticing that I had abnormal puffiness - > bloating, I thought, but for no apparent reason. I asked doctors about it > and they patted me on the head and placated me with comments like about > how women of " a certain age " tend to develop a tummy. The shortness of > breath became a part of my life and I finally was referred for pulmonary > function tests. Believe it or not, they were normal. How someone can be > so short of breath that strangers would notice it on the phone, yet now > show up in tests, beats me. It wasn't really debilitating, though, and > strangely, I had as much stamina as I've ever had. > > However, when I became seriously ill just before and after I was diagnosed > with AIH, the shortness of breath became a major problem. I'd become so > winded from just walking across a room I'd have to sit to catch my breath. > At the same time, I had major ascetis and pedal and leg edema. Hard to > believe there wasn't edema in other parts of my body as well. > > With radically increased diuretics, the shortness of breath almost > disappeared. However, edema is creeping back into my life, partly because > I'm back on a higher level of prednisone, and so is the shortness of > breath. I think that the edema brings on much of the fatigue. > > I can't help worrying if this might be doing some heart damage. I know > that edema caused my Mom's chronic problem with heart failure. Not > something I want to worry about, but you have to consider possibilities > when you don't get the answers you need. > > Take care, > Geri > > ------------------------------------------------------------------------ > Are you hogging all the fun? > http://www.ONElist.com > Friends tell friends about ONElist! > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to -subscribeonelist > 2.) To UNsubscribe send to -unsubscribeonelist > 3.) Digest e-mail format send to -digestonelist > 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 1999 Report Share Posted May 6, 1999 Sue, The first tests they did for shortness of breath were all related to my lungs. I was sent to a pulmonary specialist who ordered a respiratory exercise test (on a treadmill, like an EKG) and I also had a couple of tests that required breathing in and out of tubes, for pulmonary function. They found a spot on one of my lungs, made me have a lung biopsy which was negative for cancer, then did another x-ray and the spot was gone. I also had an echocardiogram and an exercise EKG, but not the treadmill kind. One of those that takes an hour or more, where they inject something to speed up the heart rate, then they put you through minor exercises and measure the effects. None of the tests were unpleasant (except the lung biopsy, since my lung partially collapsed). Briefly in February my doctor's associate put me on both Aldactone and lasix, in addition to Ameloride that I was already taking. That was when I lost 8 lbs. and at the same time, all of my problems with shortness of breath went away. In fact, I felt the best I had in a year. However, my GI doctor took me off the Aldactone and increased the lasix. Now the shortness of breath is back, but not as severe as it's been in the past. I'm also having increased ascites and I'm willing to bet that the fluid I'm retaining again is the cause of the shortness of breath returning. There is a very real danger of kidney damage from taking too many diuretics. I'm actually taking borderline too many already, but there's that ongoing problem with fluid retention that's also dangerous. So, either it's going to be my liver or my kidneys at this rate. I'll opt for the kidneys. Easy to say since right now I don't have a kidney problem. My husband is doing okay most of the time. Had a great today then tonight he had a severe attack of angina. Supposedly, when that happens he's to take nitroglycerin, wait 5 minutes and if the pain doesn't go away, take another, wait 5 minutes more, take a third nitro, then if it's not better, we're to call 911 and rush him to the hospital. He didn't do that. Instead he was literally pacing the floor with pain but it finally subsided. Though there's a blockage, it's apparently a " secondary " artery and they say that the blockage isn't life threatening. I can't imagine him having to live with daily pain like that from now on, though, and how would he know if it was actually life threatening after all, since he's been told that the pain doesn't have to mean anything? For that reason, we're going to have to go to a major cardiac center and get a second opinion. I have a hunch that there will be a bypass in his future, but his LV cardiologist said that they " think " medications will control the problem. If he's wrong, guess who loses? I made a quick transition from 30 mgs. of pred down to 20, where I stayed for awhile, then reduced at the rate of 1 mgs. every 2 weeks. By the time I got down to 10 mgs. I had a BIG immune system flareup and had to go back to 15 mgs., reducing from there at the rate of 1 mg. per week. It didn't work for me, but I hope it works for you. I think that if your own adrenal system kicks in, you should be okay. Sometimes I wonder if I wouldn't be better off to just give up, settle for 20-25 mgs. of pred, and spend all of my time sitting at home looking like Buddha. At least I wouldn't have all this pred anxiety. I am really envious of those who can simply withdraw and stay withdrawn from the infernal stuff. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.