Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 I'm very sorry to hear of all you and your family have gone through. I'm writing to strongly agree with you on taking someone with you to appointments. When first diagnosed with AIH, I was extremely ill. I'd never in my adult life had anyone go with me into a doctor's appointment, and it never occurred to me to do so at this time. My husband had to take me to appointments, but he waited outside. One day, he suggested he go in, to help me carry paperwork, I think. Afer the appointment, I discovered that he and I had heard entirely different things from the doctor! My ability to comprehend was quite scrambled, although I didn't realize it at the time. I believe that many people who are ill or worried have trouble understanding all a doctor's instructions and remembering everything they need to ask. When I became stronger and could get to appts on my own, I began writing out every question I had in advance, leaving a space to write in the responses if they were complex. Best wishes to all of you. (Incidentally, I lived in Boston for 25 years, before moving to San Francisco.) Harper In a message dated 1/10/07 5:21:35 AM, mbdill@... writes: > > And, for all of you out there struggling with these various liver > problems, do try to take someone with you to appointments if you > can. My husband thought he was mentally ok all along, but he was > quite shocked to discover just what he did not hear during or > remember about the many appointments. I kept a note book, helped him > with the questions and wrote down what the doctors had to say during > each appointment. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 I'm very sorry to hear of all you and your family have gone through. I'm writing to strongly agree with you on taking someone with you to appointments. When first diagnosed with AIH, I was extremely ill. I'd never in my adult life had anyone go with me into a doctor's appointment, and it never occurred to me to do so at this time. My husband had to take me to appointments, but he waited outside. One day, he suggested he go in, to help me carry paperwork, I think. Afer the appointment, I discovered that he and I had heard entirely different things from the doctor! My ability to comprehend was quite scrambled, although I didn't realize it at the time. I believe that many people who are ill or worried have trouble understanding all a doctor's instructions and remembering everything they need to ask. When I became stronger and could get to appts on my own, I began writing out every question I had in advance, leaving a space to write in the responses if they were complex. Best wishes to all of you. (Incidentally, I lived in Boston for 25 years, before moving to San Francisco.) Harper In a message dated 1/10/07 5:21:35 AM, mbdill@... writes: > > And, for all of you out there struggling with these various liver > problems, do try to take someone with you to appointments if you > can. My husband thought he was mentally ok all along, but he was > quite shocked to discover just what he did not hear during or > remember about the many appointments. I kept a note book, helped him > with the questions and wrote down what the doctors had to say during > each appointment. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 I wish you well with the medical bracelet. I have worn one for years, but only once, in an emergency, did anyone look at it. Last month, I was experiencing chest pains and shortness of breath. Hubby took me to Urgent Care who shipped me off to ER by ambulance. I could not remember all of my meds, and kept giving wrong information. I had my bracelet on, but not once did they check it out...not even in the ambulance. Finally, after two nitro pills and two baby asprin, oxygen, they allowed me to go home saying that they thought it was just stress. Perhaps it was, but the arterial gas blood work showed that my O2 level was 70%. That is why the O2 helped. I wish you well. Debby [ ] Re: itching & medication induced hepatitis - Hello All: I joined this site looking for information to help my husband who was diagnosed with drug (augmentin)induced hepatitis in September '06. While there has been little info related to this up until now, we have still found the exchange of information helpful re diet and support in general and we thank all of you who faithfully correspond. I'd like to share what we have learned thus far: Drug induced hepatitis due to augmentin is not that rare or unusual and it is a known problem. My husband also was given augmentin for a stubborn sinus infection when amoxocillin failed to clear up the infection. The intense itching, anorexia, low grade fever etc. all followed within about 10 days, give or take, of his last dose. We reside in the Boston area, and the primary care doc and the initial gastro, both at a reputable suburban hospital, while concerned, were not able to help with the non-stop itching and ongoing weight loss (about a pound every day or two). Cholestyramine (what an adversive drug!), urso, atarax, ice packs, fans, etc. were all tried with little success and at most, my husband would sleep 45 minutes at a time followed by 3 hours of itching to the point where he was losing his ability to cope. Through an unexpected connection, in November we were able to get a referral to the gastro department/transplant team at Lahey Clinic. They had him stop all of the above meds and start naltrexone which dramatically relieved his itching. Per the Lahey doctor, naltrexone is commonly used for people with drug addictions but a side effect of the drug is the relief of itching. Must work on the same brain receptor sites. Because of the relief provided by the naltrexone, my husband was able to sleep again---up to 18 hours at the start--- and this seemed to be key in allowing the liver to begin to repair itself. We were also told that medication induced hepatitis is a necrotic process as opposed to autoimmune. Typically, they said that people usually improve more quickly than my husband has from a drug induced hepatitis. But, they are also more certain than ever that the culprit was the augmentin and not any of his blood pressure or heartburn medications. Apparently, almost every drug has the potential to cause a problem, but augmentin does so more often than others. However, as of 12/22/06, all of the labs were finally headed in the right direction and this hepatitis should be behind him within the next month. He has been able to return to work (after 4 months out) and now wears a med alert bracelet engraved with " penicillin sensitivity " as we were told he should now consider himself at risk with any future use of penicillin related meds. We also learned, that because the augmentin caused a necrotic process, my husband would have been too ill for a partial transplant, would never have been able to regenerate a whole liveron his own and thus would require one from a cadaver. Lahey is one of the transplant hospitals in this area and does live donor transplants, which our son had volunteered to do for his Dad. We had thought that we had a " worst case " solution until we talked to the Lahey team. While we were extremely lucky that we made the connection with the team at Lahey, I do feel that my husband spent 2 months suffering needlessly because of the first group of doctors. We had asked the orginal doctors if there was anything else they could do for him, prescribe for him but they had assured us there wasn't. I do believe he would still be struggling, perhaps worse and heading for a transplant if not for Lahey Clinic. I suppose the lesson here is to keep asking, keep trying, keep pushing for answers. There is no good way of predicting, evidently, just who will react badly to a medication and there is a lot of luck involved in getting to a person who might hold the key to getting better. It is rather ironic that all of the heptologists here seem to know each other---big city but small medical specialty. Why the first doctors weren't making use of naltrexone, or at least giving it a try when a patient wasn't making any progress, is a mystery to us. And, for all of you out there struggling with these various liver problems, do try to take someone with you to appointments if you can. My husband thought he was mentally ok all along, but he was quite shocked to discover just what he did not hear during or remember about the many appointments. I kept a note book, helped him with the questions and wrote down what the doctors had to say during each appointment. Best wishes for 2007 and hope everyone finds and receives the help and support they need for a healthier new year. ronnie in MA -- In , chris shevchik <chrisnc06@...> wrote: > > > erSupport-L , " chrisnc06 " <chrisnc06@> wrote: > > > > I was diagnosed 3 weeks ago with autoimmune hepatitis. they believe > it > > was drug induced by taking the antibiotic augmentin for sinusitis. > > I also have hypothyroidism and was told augmentin is contraindicated > > in people with thyroid problems. My liver was having acute symptoms > > and a biopsy confirmed the diagnosis. I am on prednisone 40 mg daily > > and having lots of sleeping issues. > > Has anyone else gotten hepatitis this way? I am scared of the side > > effects of the prednisone - any advice on treatment? > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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