Aa
Autoimmune Hepatitis & other autoimmune diseases
Hi,
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases? I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one. In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases? I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one. In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody
There is another forum autoimmune hepatits with a few of us allway writing and supporting each other. Find it and we would love to hear from you.
Sarad
Sarad
Hi Jody
I have a paternal first cousin that has RA
The other forum Sarad's referring to is under Autoimmune Disorders....there's a post that she started that we've been talking on for a while...come join us!
Erin
I have a paternal first cousin that has RA
The other forum Sarad's referring to is under Autoimmune Disorders....there's a post that she started that we've been talking on for a while...come join us!
Erin
Hi Jody,
I'm the 3rd member of the group on the other website that Sarad referred too... Welcome!!!
I'm the 3rd member of the group on the other website that Sarad referred too... Welcome!!!
Hello, my mother 63 y/o, went to the Dr. last year (july 07) for a severe headaches and in the blood test she come with the enzimes severe high, the doctor inmediately told her to stop any medication she is taking and change diet, she has never been a drinker, very healthy foods only. She also have high pressure, (doctors say emotional high pressure do to stress), and back in december she has UTI, so she need to be treated, also she start to suffer arthritis, the doctors think the enzimes went to high do to so many pilds for the arthritis, so they stop all the pilds. But for the UTI she has to have an antibiotic, bactrim, didn't work so they put her in cipro, didn't work neither, so they give her a vaginal cream, seems that work, but know is not only her hands hurt for the arthritis, also her legs and back, she start to have fever, up to 102 and swelling in the hands, she went to the hospital, they have her under observation for 2 days and sent her back home and told her not to eat any medicine, but she is in a lot of pain, should we take her to a different hospital? or that shoul be the diagnostic and should be in a lot of pain?
Please some one help me to help my mother.
Thanks..
Please some one help me to help my mother.
Thanks..
Hi Skini,
Sorry, but I don't understand. Are you saying she was diagnosed with Autoimmune Hepatitis? I believe in order to be properly diagnosed, she would need a biopsy. Have her enzyemes been high or what??? Before my diagnosis, I did have upper body arthritis to the point I couldn't dress my upper body. Are there others in your family with any autoimmune diseases??
Jo
Sorry, but I don't understand. Are you saying she was diagnosed with Autoimmune Hepatitis? I believe in order to be properly diagnosed, she would need a biopsy. Have her enzyemes been high or what??? Before my diagnosis, I did have upper body arthritis to the point I couldn't dress my upper body. Are there others in your family with any autoimmune diseases??
Jo
Hello Everyone, I just stopped by your community to make sure everyone knows about the new Transplant Forum. I didn't know if anyone would be interested in the forum or not. But I do want to invite all of you. If anyone has had a transplant, would you consider sharing your story. I feel the new site will be of great benefit to a lot of people and since we are kind of sister sites I thought we could help one another. Thank you! Kande
Hi Jody
In response to your question over in the other forum about getting off prednisone. I've been on it since Nov 07 and my body has responded such that my LFT's went immediately back to normal after starting the prednisone. My GI began tapering the dosage as soon as we saw that my enzyme levels had dropped. I was told from the very beginning that they would get me off the prednisone as soon as possible and switch to another immunosuppressant, which I'm on now too (Imuran).
My question for you would be, how are your LFT's? Are they still really high, or stable in the normal range? Since everyone is different, it may take longer for certain people to get off the prednisone. I would definitely talk to your doctor about it b/c you don't want to stay on it for a long time.
In response to your question over in the other forum about getting off prednisone. I've been on it since Nov 07 and my body has responded such that my LFT's went immediately back to normal after starting the prednisone. My GI began tapering the dosage as soon as we saw that my enzyme levels had dropped. I was told from the very beginning that they would get me off the prednisone as soon as possible and switch to another immunosuppressant, which I'm on now too (Imuran).
My question for you would be, how are your LFT's? Are they still really high, or stable in the normal range? Since everyone is different, it may take longer for certain people to get off the prednisone. I would definitely talk to your doctor about it b/c you don't want to stay on it for a long time.
Hi iloveigs,
Thanks for the info. All my blood work has always came bk fine. I see a hepatologist annually but he has never suggested that I would ever go off the prednisone. I also take the Imuran & have since the beginning. Perhaps it is due to I did have HCV & they are afraid of a relapse of one of the diseases. I don't know but I will ask on my next visit which is in May. I do appreciate you letting me know this, I am making a list of questions to ask about this on my next visit. Jody
Thanks for the info. All my blood work has always came bk fine. I see a hepatologist annually but he has never suggested that I would ever go off the prednisone. I also take the Imuran & have since the beginning. Perhaps it is due to I did have HCV & they are afraid of a relapse of one of the diseases. I don't know but I will ask on my next visit which is in May. I do appreciate you letting me know this, I am making a list of questions to ask about this on my next visit. Jody
I'm shocked they haven't said anything about getting you off the prednisone. My doctor was all but apologizing about putting me on it in the first place and seems cognizant of the fact that I need to be off of it, or at a lowered dose, asap.
Just got back from my GI appt.
AST: 42
ALT: 32
I get to drop to 5mg Pred today and I'll recheck LFT's in 2 wks. He said at that point, if all is normal, I'll drop to 2.5mg for 10 days and recheck one more time.....then I'll be off it finally!
Jody, my GI mentioned today that some people have to stay on a low 'maintanence' dose of prednisone, like 2.5mg, but he didn't say if that was a permanent thing. He told me today that I'll always have to take Imuran for it (as long as my body reacts correctly).
Erin
AST: 42
ALT: 32
I get to drop to 5mg Pred today and I'll recheck LFT's in 2 wks. He said at that point, if all is normal, I'll drop to 2.5mg for 10 days and recheck one more time.....then I'll be off it finally!
Jody, my GI mentioned today that some people have to stay on a low 'maintanence' dose of prednisone, like 2.5mg, but he didn't say if that was a permanent thing. He told me today that I'll always have to take Imuran for it (as long as my body reacts correctly).
Erin
iloveig & gentleliver,
I remember last yr when I was there complaining to his asst about something but can't remember what. She said if necessary she would talk to him about trying to get me down to 2.5 mgs of prednisone but we discovered something else was the problem. The only thing I do know is that the AIH was active for about 5 yrs before it was discovered & that damage had been done, not sure how much, another question to ask when I go bk, & maybe that is the reason being damage, just don't know. They have never said anything to me about removing the prednisone though. Guess I need to find out why. Anbody else out there still on prednisone for long periord of time? jo
I remember last yr when I was there complaining to his asst about something but can't remember what. She said if necessary she would talk to him about trying to get me down to 2.5 mgs of prednisone but we discovered something else was the problem. The only thing I do know is that the AIH was active for about 5 yrs before it was discovered & that damage had been done, not sure how much, another question to ask when I go bk, & maybe that is the reason being damage, just don't know. They have never said anything to me about removing the prednisone though. Guess I need to find out why. Anbody else out there still on prednisone for long periord of time? jo
So to all out there who are off of prednisone & have been off, how long & how are you doing? I need to know these things prior to go to see doctor. I know prednisone isn't good for you & the consequences one could have from it. I guess I have just had so many other things on my mind to worry about I really haven't given this much thought.
Thanks for any imput please. Jo
Thanks for any imput please. Jo
iloveigs...First let me say, I am so happy for you. What did your GI say about your rib pain? Congrats on the prednisone....
Jody515...I have been on prednisone since March,07. My Dr. told me the max he would want me on the prednisone is a year. Well, it turns out my disease is a lot more aggressive then he hoped, but he told me the other day his goal is to get me to at least a "maintenance dose" anywhere from 1 mg to 5 mg. It depends on the person. I would say you need to definitely discuss w/your Dr. I am currently down to 10 mg, they are going to check me in 2 weeks. If all goes well the next drop is 7.5 and he said it just becomes a body game at that point. They have to see what your body will allow. His hope though is to just be on the immunosuppressent. Definitely talk to your Dr.
By the way, my Dr. told me my disease was probably active for about 2-3 years before we discovered it as well. May be why my disease is so aggessive, much like yours. I did have some liver damage as well, but he won't discuss how much. He tells me to focus on the recovery, and he will deal w/the rest..
Good Luck talking to your Dr....
Jody515...I have been on prednisone since March,07. My Dr. told me the max he would want me on the prednisone is a year. Well, it turns out my disease is a lot more aggressive then he hoped, but he told me the other day his goal is to get me to at least a "maintenance dose" anywhere from 1 mg to 5 mg. It depends on the person. I would say you need to definitely discuss w/your Dr. I am currently down to 10 mg, they are going to check me in 2 weeks. If all goes well the next drop is 7.5 and he said it just becomes a body game at that point. They have to see what your body will allow. His hope though is to just be on the immunosuppressent. Definitely talk to your Dr.
By the way, my Dr. told me my disease was probably active for about 2-3 years before we discovered it as well. May be why my disease is so aggessive, much like yours. I did have some liver damage as well, but he won't discuss how much. He tells me to focus on the recovery, and he will deal w/the rest..
Good Luck talking to your Dr....
Erin: Great news about the prednisone way to go. How are your ribs doing you must let us know exactly what it is.
Kim: If I remember correctly you mentioned that you went down on the prednisone. Way to go. You must be so happy.
Well I have been feeling better lately less nausea.
Jody: You have been on prednisone for a long time. I started May 1, 2007 and from the begining my liver Dr. said that the goal is to get me of prednisone with a year or less. I am now off of it 9 month later.I am also on imuran from the begining 75 mg and hopefully I will go down to 50 mg by the end of March. Then I will probably stay on it for a long time.
You will really have to check this with your Dr. I know that being on prednisone for so long is not very good but I am not a Dr. Wish you lots of luck and keep us posted.
Take care ladies and be strong. Sara
Kim: If I remember correctly you mentioned that you went down on the prednisone. Way to go. You must be so happy.
Well I have been feeling better lately less nausea.
Jody: You have been on prednisone for a long time. I started May 1, 2007 and from the begining my liver Dr. said that the goal is to get me of prednisone with a year or less. I am now off of it 9 month later.I am also on imuran from the begining 75 mg and hopefully I will go down to 50 mg by the end of March. Then I will probably stay on it for a long time.
You will really have to check this with your Dr. I know that being on prednisone for so long is not very good but I am not a Dr. Wish you lots of luck and keep us posted.
Take care ladies and be strong. Sara
Hi Everyone,
FIrst let me start by apologizing to iloveigs & all who are doing so well with their treatment, I am very happy for you. I hate to say I have had this disease for so long & have never paid much attention to the blood work or know what is good & what is bad other then the enzymes or to when my doctor tells me everything is okay. So congrats to those of you who have achieved good blood work and hopefully everything will remain that way.
I guess because I had 2 liver diseases going on at the same time & went into shock over it that I just couldn't comprehend enough to stay on top & then when I took that other treatment for so long & was so ill it just couldn't sink in that I could ever become that ill & whatever knowledge I had went out the window with that treatment even. Chemical treatment for that other disease leaves your body thru the head & my head is still not clear from it all.
I do intend to speak with my doctor about the prednisone but I am afraid I am probably one of those persons who will have to be on prednisone for all time. My doctor spent 8 yrs at Miami hospitals specializing in autoimmune diseases prior to going into hepatology. But I still need to find out if it is going to be a forever type of disease to where I have to take that drug always. I certainly hope not but it seems so.
Again I am so happy that so many are doing okay & for those that aren't responding well, I will pray for you everyday. Hugs, Jo
FIrst let me start by apologizing to iloveigs & all who are doing so well with their treatment, I am very happy for you. I hate to say I have had this disease for so long & have never paid much attention to the blood work or know what is good & what is bad other then the enzymes or to when my doctor tells me everything is okay. So congrats to those of you who have achieved good blood work and hopefully everything will remain that way.
I guess because I had 2 liver diseases going on at the same time & went into shock over it that I just couldn't comprehend enough to stay on top & then when I took that other treatment for so long & was so ill it just couldn't sink in that I could ever become that ill & whatever knowledge I had went out the window with that treatment even. Chemical treatment for that other disease leaves your body thru the head & my head is still not clear from it all.
I do intend to speak with my doctor about the prednisone but I am afraid I am probably one of those persons who will have to be on prednisone for all time. My doctor spent 8 yrs at Miami hospitals specializing in autoimmune diseases prior to going into hepatology. But I still need to find out if it is going to be a forever type of disease to where I have to take that drug always. I certainly hope not but it seems so.
Again I am so happy that so many are doing okay & for those that aren't responding well, I will pray for you everyday. Hugs, Jo
Hi Jody,
How many mg are you on of prednisone? And are you on imuran as well? You may of mentioned it somewhere along the line, but I can't remember...
Trust me, I know what its like to have this disease be so aggressive. Mine seems to be a difficult case as well. The last time I spoke to my Dr. he told me some people w/this disease handle it very well, and others need more work. We seem to be the "more work" people. Its just aggressive. I know someone whose had the disease since she was 12 years old, she is now 40 and she is always up and down on her meds. She never seems to really be able to get off. Though they always try to get her to the lowest dose possible. Good Luck!!!!!!
How many mg are you on of prednisone? And are you on imuran as well? You may of mentioned it somewhere along the line, but I can't remember...
Trust me, I know what its like to have this disease be so aggressive. Mine seems to be a difficult case as well. The last time I spoke to my Dr. he told me some people w/this disease handle it very well, and others need more work. We seem to be the "more work" people. Its just aggressive. I know someone whose had the disease since she was 12 years old, she is now 40 and she is always up and down on her meds. She never seems to really be able to get off. Though they always try to get her to the lowest dose possible. Good Luck!!!!!!
Hi,
I am on 5mg of prednisone and have been since the year they weened me down I think would have been I believe 2002. Yes, I am on the azathriopine (imuran) 50 mg also. As a result of the prednisone I also have to take something for Gerd & my bones. I really wish I could get off the prednisone because of my bones but just don't know if it is going to be possible. My dexascan this yr showed my hips staying the same but my spine lost density so that scares me somewhat. I am going to speak with my hepatologist when I return in May to see if the prednisone can go & if not, then maybe there is something else I can take to strengthen my bones. I also take calcium twice a day to try to help. This has not been a nice disease but I do recognize that there are other people out there with much worse so I guess I shouldn't complain. Thanks for the uplift. Jody
I am on 5mg of prednisone and have been since the year they weened me down I think would have been I believe 2002. Yes, I am on the azathriopine (imuran) 50 mg also. As a result of the prednisone I also have to take something for Gerd & my bones. I really wish I could get off the prednisone because of my bones but just don't know if it is going to be possible. My dexascan this yr showed my hips staying the same but my spine lost density so that scares me somewhat. I am going to speak with my hepatologist when I return in May to see if the prednisone can go & if not, then maybe there is something else I can take to strengthen my bones. I also take calcium twice a day to try to help. This has not been a nice disease but I do recognize that there are other people out there with much worse so I guess I shouldn't complain. Thanks for the uplift. Jody
Is everyone moving to the new website?? I will post this on both just in case. I am doing well I have been on the 6 mp for about a week and loving it. Some bathroom issues but its okay. My bloods seem to be staying normal. Has anyone had high blood pressure from their pill or the condition or anything??. Been lossing weight got almost 10 pounds off! :-). Doing Wicked finally feeling like I am in control of this diease. Hope you ladies are doing well.. take care. talk soon. :-)
Fine with me wherever you all decide to post at. Leaving Saturday morning for warmer weather in Florida for about 11 days, so I will pickup where ever you all decide.
Glad to hear you are feeling good rockmelon & in control of disease. Hope all rest is well also, feeling good myself especially at the thought of getting away from this snow & cold for awhile
Glad to hear you are feeling good rockmelon & in control of disease. Hope all rest is well also, feeling good myself especially at the thought of getting away from this snow & cold for awhile
I hope you have a fabolous trip!! We are leaving as well in 18 days. Can you tell I'm counting down. This has been a tough winter. That is for sure...
As far as your prednisone goes, 5 mg is considered a maintenance dose. My Dr. did tell me that some people need to be on 3-5 mg forever. They don't know why, but some people will never be able to go off 100% and some can, and do great. I have a feeling w/how aggressive my disease has been over this last year, I will fall in to the category w/you. I believe you said your disease was aggressive as well. That may be part of the problem. But you are right, there are a lot worse things out there. By the way, how is the swelling at 5 mg. Still the puffy face? I am so over that.....
So glad to hear you are down 10lbs. I look forward to the day. I'm working out like crazy but still being on 10 mg seems like I never lose anything. I have gone down a size in my clothes, but I just seem "flabby"...Isn't the 6 MP great? I love it as well. I knew you would be fine!!!!
As far as your prednisone goes, 5 mg is considered a maintenance dose. My Dr. did tell me that some people need to be on 3-5 mg forever. They don't know why, but some people will never be able to go off 100% and some can, and do great. I have a feeling w/how aggressive my disease has been over this last year, I will fall in to the category w/you. I believe you said your disease was aggressive as well. That may be part of the problem. But you are right, there are a lot worse things out there. By the way, how is the swelling at 5 mg. Still the puffy face? I am so over that.....
So glad to hear you are down 10lbs. I look forward to the day. I'm working out like crazy but still being on 10 mg seems like I never lose anything. I have gone down a size in my clothes, but I just seem "flabby"...Isn't the 6 MP great? I love it as well. I knew you would be fine!!!!
Hi,
Doing last min preps for trip & am so excited to get away & into warm weather I can't even think straight. I am so sick of looking at snow everywhere. Rain today & in 40s so it is starting to melt but I need some warm sunshine. I know we will enjoy our trip & so will you km.
Look all, you will lose the weight from the prednisone overage. I went from about 120lbs overnite it seems when I first went on the large dosage to 163 lbs. I am now down to 132lbs & that is fine with me, don't really want to lose any more. My face is not swollen, never did swell that I could see, although I have known relatives faces who did swell bad from it. Yes, this disease was very aggressive with me but Thank you God, it seems to be under control right now.
Hope all has a good few wks in my absence & Blessings sent to you all. Jo
Doing last min preps for trip & am so excited to get away & into warm weather I can't even think straight. I am so sick of looking at snow everywhere. Rain today & in 40s so it is starting to melt but I need some warm sunshine. I know we will enjoy our trip & so will you km.
Look all, you will lose the weight from the prednisone overage. I went from about 120lbs overnite it seems when I first went on the large dosage to 163 lbs. I am now down to 132lbs & that is fine with me, don't really want to lose any more. My face is not swollen, never did swell that I could see, although I have known relatives faces who did swell bad from it. Yes, this disease was very aggressive with me but Thank you God, it seems to be under control right now.
Hope all has a good few wks in my absence & Blessings sent to you all. Jo
First of all, all you ladies going on holiday to a warmer place have a great time. We all need a break now and then.
Hey Kim how are you doing? So how much ped are you on now?
I am doing better but very tired lately and not lots of energy like I'm use to having. I guess better to deal with this than to be on prednisone.
My sweling is really going down mostly around the face I still have to work on my waist which will be a bit harder.
Erin: Haven't heard from you in a while hope everything is OK.
By the way Kim I got your e-mail on my private mail I wrote back but I think there were problems, thanks for the concern.
Well ladies take care.
Hey Kim how are you doing? So how much ped are you on now?
I am doing better but very tired lately and not lots of energy like I'm use to having. I guess better to deal with this than to be on prednisone.
My sweling is really going down mostly around the face I still have to work on my waist which will be a bit harder.
Erin: Haven't heard from you in a while hope everything is OK.
By the way Kim I got your e-mail on my private mail I wrote back but I think there were problems, thanks for the concern.
Well ladies take care.
Everything is OK on my end.....and I'm NOT going off to somewhere warmer...I'm jealous!!
Tomorrow I go for a blood draw and will call Thur morning for the results. If all goes well, I'll get to drop to 2.5mg pred. I think he will have me go 10 days (hopefully) on that dose and then check again, then I'll be able to get off it. I'll let you all know when I get the results.
Erin
Tomorrow I go for a blood draw and will call Thur morning for the results. If all goes well, I'll get to drop to 2.5mg pred. I think he will have me go 10 days (hopefully) on that dose and then check again, then I'll be able to get off it. I'll let you all know when I get the results.
Erin
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