Newbie- Autoimmune Hepatitis- Psoriatic Arthristis.. more than one autoimmune disease??

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judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/3/2006 10:42 PM (GMT -7)   
Hi,
I'm Judy, 54, diagnosed earlier this year with AIH. I started on 20mg pred., 50mg imuran. I could not take the imuran, tripled my L enzymes, made me deathly sick. My doctor started a wean about 6 weeks ago. I am down to 25mg. I will be going on another Immune suppresant but cannot remember the name of it right this mintue. I just know it starts with a C and is not cellcept. I will repost the name later today. 
 
I also have Psoriatic Arthritis and was wondering if anyone that reads this board has more than one AI Disease, specifically Psoriatic Arthritis or RA. I started on Humira about a month ago to help the PA. Does anyone know anything about it? 
 
I guess that is enough for now. I have much more to share and a lot of questions. I belong to a group on Yahoo, but have been looking for a message board. I am glad to be here.
 
Judy
 
 
 
 

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/3/2006 10:55 PM (GMT -7)   
It's me again. I left something out. I went on 40mg of pred. after I could not take the Imuran. Also, 70% of my liver has been affected. I am into fibrosis, but have not crossed to the big c, and we are hoping to get this under control so that does not happen. I had elevated enzymes for years, but doc. said probably one of the medications I was on.
I took anti-depressant medications and still do along with lamictal for bi-polar 2. From what I have heard because I responded to prednisone treatment at a high dose and all but one of my liver enzymes are down, and it is only elevated slightly, 6points or so, that I have autoimmune  Hep. and it is not chemically induced.  Does anyone have any ideas on whether taking psych. med for years can do all this damage and then turn into autoimmune hep or once chemical damage is done to the liver it can turn into AIH?
 
Thanks,
 
Judy

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 9/4/2006 2:09 AM (GMT -7)   
Hi Judy,
Welcome to the forum. I have AIH and have at times also had psoriasis which is also an auro immune disease. My family has a history of autoimmune diseases. My mother had Crohnes disease for many years and earlier this year my younger sister dies from Wegener's granulomatosis.

I don't know about the psych medications can damage the liver. you'll need to research that or ask your heptologist.

You are fortunate to have fibrosis - not cirrhosis. Unfortunately my damage was already cirrhosis by the time my AIH was diagnosed, but in 27 months it has not become any worse. (I think). Liver enzymes are almost all normal.


I'm very interested in your alternative to Imuran. That gives me another option if CellCept at some time fails to do it's job.

Take care.
Marg
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/4/2006 2:49 AM (GMT -7)   
Hi, Judy, and welcome! Marg, are you up late or in a different time zone? I couldn't get to sleep tonight, so finally got up at 5:30.

Judy, aside from hep C and liver cancer, I also have Raynaud's disease and osteoarthritis...both of which I believe may fall under the category of autoimmune disease. Additionally, I have avascular necrosis (also known as osteonecrosis.) This is a disease where the bone dies, primarily in large joints such as hips, knees, ankles. The main cause of this is Prednisone (though not in my case), so I'm concerned when I hear of people on this drug for any length of time. What are you down to now, and will you continue on it indefinitely or be able to get off altogether at some point?

I'm glad you are here and have met Marg. I hope you will post often.

Connie

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/4/2006 9:01 PM (GMT -7)   
Hi Connie
Thanks for the welcome. You have a plate full to deal with. How well do you cope with it? And, how disabling is it? I had never heard of autoimmune diseases until I developed them.

Prednisone pushed me into high blood sugar so I have had an onset of diabetes 2. I'm hoping that when I am down on the prednisone low enough that the symptoms will go away and at least I won't have to deal with diabetes. I have been on it for about 5 months, give a week or 2. I started with 40 and will be dropping to 25 this next week. I am hoping to get off it, but from what the group members say in my yahoo group, a lot of people never get completely off it. I am worried about a relapse. My liver is into fibrosis already but I still have good liver function and the attack on my liver seems to have stopped ( the enzymes are normal). My doctor said he would be trying cyclosporine & may have to continue me on a low dose of prednisone. I guess it's just a matter of watching the enzymes very closely and going up if they go up.

Again, thanks for the post and welcome. I am so glad to have found this board. I have been looking for one for awhile. I have only been on one other board, not related to illness, and don't know my way
around them too well, but I have found the chat room already..lol.

I hope to hear from you soon.

Judy

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/4/2006 10:05 PM (GMT -7)   

Marge, I just wrote you a very lenghty reply to your post. I hit something wrong and it is gone. UGH.. So I will not rewrite it all over again.  I did ask when and how did you discover the cirrossis? Did you have fatigue or any other symptoms beore you found out?

Also, the name of the medication that I will be going on after I wean more is called cyclosporine. I have not been on anything but prednisone because I could not take imuran. So the doctor put me on 40 mg of prednisone and it started bringing down my L enzymes right away.  It has also helped the other autoimmune disease I have, psoriatic arthritis. I am now on Humira for the PA.

I'm glad to have found this board. I am in a support group on yahoo, but had not found a board to post on. Actually I have only posted on one other board, not health related, so I am still finding my way around here. I'm glad to be here. tongue

I'll go for now, hope to hear from you soon.

Judy


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 9/5/2006 4:22 AM (GMT -7)   
Hi Judy and Connie,

Judy, My doctor (heptologist) has mentioned cyclosporin if CellCept ceases to lower my bodies rejection of my liver. But 9 months into CellCept and things are certainly improving.

I was extremely fatigued, feeling bad all the time, no interest in anything, for several momths before I had blood tests. Before i got the results, I became jaundiced, and then the results showed hepatitis. about eight weeks later, a final diagnosis - AIH. The biopsy showed the cirrhosis. Heptologist said I may have had liver disease for as long as twenty years, without the symptoms becoming obvious. You begin to think it's the fact that you're getting older and can't do what you used to. I'm 58 years young today.

Connie. I'm in Australia. 5pm your time (Forum time) is 8am the next day here in Sydney.

Take care.
Marg
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/5/2006 5:04 AM (GMT -7)   

Marge,

I just read your post. I have heard of liver disease with no symptoms for years, and then a biopsy shows cirrohis. There can be so many things that cause fatigue and it can be passed off for many things.

I changed doctors after 2 years of increased L enzymes and him telling me that it was probably a medication I take for depression, and that we would keep an eye on it. I felt like he was not taking the fatigue seriously. Some days I slept 14 16 hours after crawling out of bed for bathroom, eating, ect. I had no energy. I said to  my new doctor, recommended very highly," Please find out what is wrong with me. I feel like I am dying." She wasted no time getting me into a GA. I do not have a hepatologist yet, and do not know that I will get one. My Gastro DR. is very aware of autoimmune diseases. He has crohnes disease. I can't spell that work, still. And he has had it for 10 years. He is compassionate and very informed.i have been advised to go to a hep. but I have such a good relationship with him, I hesitate to do that unless my MD ( who is very involved in my treatment) and, or, my GA suggests it.

I do believe in his ability and he respects my research and input that I have done on AIH and liver disease. I get my reports, test results, ect. and keep my own file to ck my enzyme levels. The biopsy report I read and the letter he sent to my doctor hit me pretty hard, but I asked for the records. I also asked him how much is damaged on a scale from 1-10 he said 7 1/2. So, I know I have some scarring, the bridging, the necrosis.

I am very encouraged that you have cirrohis and have done so well. Is it possible that something attacked your liver suddenly?  I have heard of that happening. What is your prognoisis?

Sorry so many questions, I am newly diagnosed and want to learn all I can. Are there any  others on here with AIH. It is rare and people seem to get really quiet or don't know what to say if you say the word hepatitis. Or, if you say cirrohis. My GA told me to not bring it up to people that did not understand it, to be vague. He said I would be mis judged. If yo have cirrohis, you are bound to be an alcoholic, and if you have hep. you have had sorid sexual encounters or drugs. Sad, but it's true. I have found out. But I was also uninformed until diagnosed, so I can understand. I just wish there was more out there on AIH  diseases.  For some reason, it seems to be tabu. Maybe that is my imagination. After all, hepatitis only means (inflammation of the liver). But it gets a bad rap.

That's all for now. I hope to hear from  you again. Its amost 8:AM  here in Louisville, KY, time to great the day.  I hope you have a good one.

Oh, I'm 54, widowed in 99, I  have a loving, supportive, partner, Willie.   3 children and 4 grandchildren.

Thanks for being here.

 

Judy


Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
                                                                              Margaret Mead


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/5/2006 7:03 AM (GMT -7)   
hi judy and welcome,
though i dont know much about AIH,,,one thing i feel after dealing with my husband(chronic hep b) and my bout with acute hep b(which was severe enough for me to be hospitalized and almost died),,,,is I cant be quiet,,,,,,,I have made it a point to tell everyone i can about our story so that maybe we can keep ONE person from gettin this,,,,,,or help one person who may already have it get the help they need BEFORE they develop cirrhosis,,,,,so many ppl put off,or are put off by drs,,,,and by the time they find out alot of damage is done,,,,,,i have had not one bad reaction about hep b(except for my kids father,who is an idiot and knows nothing about the disease,,looking for an excuse to cause me trouble,,) ,,,total strangers have hugged me,shook my hand,,ect,,,and told me thanks for telling them ,,,,,,,,good luck and hope you keep returning to post updates for us:)
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/5/2006 10:04 AM (GMT -7)   
Marj, that is quite a time difference!  I suppose all of Australia is shocked by the death of Steve Irwin.  We certainly are over here in the U.S.  He was a risk taker, though.
 
Judy, my liver enzymes have never been higher than 3 x the upper liimits of normal...and that was just for ALT and AST, I think.  In fact, despite chronic active hep C and liver cancer, my liver function is still good--too good for me to be considered for transplant.  So liver enzyme levels are not always an indication of how sick you are.  The alpha fetoprotein level was more indicative of what was going on with me.  They use it as a tumor marker in blood tests.  Supposedly, cirrhosis can only be diagnosed through through a liver biopsy.  I've had so many scans, I would think that it would show up on something if I had it.  However, to be positive, they still want me to have a biopsy prior to liver resection (last time was in '93.)  The surgeon said that if I have cirrhosis, it could have a bearing on how well I heal from liver resection.
 
I cope pretty well.  I just take it as it comes and do what I have to do, and pray for strength and guidance.  I was approved for SS Disability last year (just based on the hip problems and hep C), so sometimes I end up sleeping all day if I need to.  When I first found out I had hep C, I knew very little about it and told people in my office.  I could literally see them taking a step back, as though they thought they could get it by just breathing the same air.  On this forum, of course, I am very open...but otherwise I don't disclose that I have hep C unless I think it will help someone.  I also disclose it to medical personnel, and they always thank me for being honest.  Of course, this is a very personal decision and each person will see fit to handle it as he/she thinks best.
 
Judy, getting copies of your records is an excellent idea, so you can see test results, etc., with your own eyes and track your liver enzymes.  I did that for a year or two when I was first diagnosed with hep C.  I also got "blown off" for the first 2 years that I had symptoms of fatigue--was told it was from smoking (I stopped nearly 4 yrs. ago), from hormones (I was in perimenopause), etc.  When I got a new doctor, she saw fit to do a test for hep B and C and mononucleosis.  That was in '92, and I believe a specific test for hep C had just become available in '90 or '91.  She sent me to a GI doc, who did the biopsy and got me started with treatment.  It is only in the past year or so that I have been seeing a hepatology oncologist.  So if you are comfortable with your doctor, there's no reason to change unless you need to.
 
Aside from autoimmune hepatitis and alcoholic hep, there is a type of hepatitis/cirrhosis that is caused by prescription drugs. 
 
I am glad you found us.  There is such a variety of information to be found here, and wonderful support from members.
 
Hugs,
Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 9/7/2006 5:58 AM (GMT -7)   
Shirl,
You are wise to get your blood results. I get a copy as well. It's good to keep an eye on what's happening and it's very encouraging to see the numbers rise or fall as they are supposed to.

I agree about the perception of many people to liver disease. You will read many posts on the Forum about discrimination in this area, even with medical staff. When I mention that I can't drink alcohol due to a liver problem I always add, it was not caused by alcohol, drugs or unsafe sex. My body just rejected my liver for some unknown reason. People look surprised and sometimes ask many questions. Educating more and more people may help just one person as trish said.

Your doctor seems to be doing all the right things. If your results began to decline youmay seek a heptologist but at this stage I'd continue to do what you're doing.

Continue the research. I have some interesting info on AIH and auto immune diseases. I'll see if I can scan some of it and add it to a post. It's school vacation in about 3 weeks. I'll make that one of my vacation projects.

Take care everyone.
Marg
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/7/2006 4:57 PM (GMT -7)   
Hello,
It's Judy, I've changed my handle or whatever you call it. LOL.. to judyinky. I live in Louisvillle, KY. I want to thank you who have written to me. You have a source of support and encouragement.
 I have been having a some difficult days. I think it is the extra drop in the prednisone to 25. Today I took 30. MY doctor gave me the liberty to go back and forth a few days right after the drop if I was feeling too fatigued or emotionally unable to handle the moods.
 
 It's not an easy thing from all I read getting the body and the adrenal system back in check after prednisone, if that ever really happens. I have also read that so many relapse while trying to titrate off of prednisone. One of my friends in my support group on yahoo wrote me that she was in remission for 3 years, and now has   had a relapse. She is on  40 of prednisone and is heartbroken. She said some interesting things about what her doctor discussed with her about the relapse. I will copy and post that. I may be valuable to someone.
 I know that dangers of prednisone, and I already have diabetes because it. Hopefully, that will go away as I decrease the prednisone, if my pancreas is healthy enough to handle things. I'm praying it is. I have a feeling because of some symtoms I had before I even started prednisone, that I was borderline diabetic, or was already an undiagnosed type 2 diabetic. One, my eye sight was blurry for some time, two, I was very thirsty and hungry all the time, 3, I had to pee all the time, and who knows if the fatigue was from the AIH, the Psoriatic Arthritis, or a combo including possible diabetes. Aslo, I have read that if you get it and were predisposed because of heredity ( brother, aunt) , that it might now go away once the prednisone has stopped. I guess I will deal with that when the time comes.
 
Until then I continue to take it one day at a time. I am so glad I have found this place to vent and to learn. Hugs to all of you all. I would like very much to get as much info as possible and even emailed to me. It could be something very valuable that could save me a transplant, and or my life. I was reading s letter my GA wrote to  my MD. yesterday.  I  have bridging neucrosis. And, he said, "she is well on her way to cirrhosis." So, I want to keep a close eye on things myself, possibly have my MD, who is so very supportive, run blood work once weekly if necessary.
 
I do trust the doctors that I have now to a degree. But it is not their body, it is mine. MY GA has Crohns disease. So I feel he has expertise in AI diseases. BUT, I need to go to a hepatologist,  I have been told this over and over by my yahoo support group for AIH.  So, I'm trying to find one in this city at the University of Louisvillle teaching hospital. Anyone have any ideas of how to find a good one. MY MD told me one not to go to nono Of course that is between us and I do not know why, but I will take her word for it. She is pretty cool. She is checking out the University of Louisville school of Medicine for a Hepatologist for me if I decide to change.   She works with me very closely with all my health issues and I am so grateful that I changed doctors when I did.
 
 I won't put my life into a doctor's hands again.   My other doctor knew my enzymes were slightly elavated 3-4 years ago. He told me it was probably the medication I was on for depression, and that he would watch it.   Well, why did he not pursue this, I wonder???  I wasn't seeing him on a regular basis for anythng except colds, blood pressure. I also had joint pain and psoriaisis, and of course, horrible fatigue. Everytime he did blood, he saw them. He did do hep tests, all negative.
 Well, why did he not pursue that???? Everytime I had blood work, he would say, they are a little higher. We'll keep an eye on them.  I may have to make you an appointment with a GA to check that out. I'm so glad a friend of mine advised me to go to her MD.
 
He was treating me with PAIN PILLs,(with elavated liver enzymes) for the arthritis, CRAZY HUH!!! in combination with NSAI drugs,  And the fatigue he passed off as depression.  GEEZZZ!!! I was too fatigued to much care I guess until I changed doctors.
 
When my new MD heard listened to me, and really heard me, she went into action. 
. I remerbering saying to her, "Please help me. I am so very sick and I do not know why." confused   And, she did!! yeah
 
  She got me  in to see  a GA quicky as soon as she saw my tests. Of course there was the ultrasound, tests and more tests, the biopsy, the worry. ect.
 
 I had been having  horrible joint pain for 2 years also, being treated for arthritis and psoriisis seperately. She told me of a condition known as Psoriatic Arthritis. It is possible that you may have it.  She called my Dermatologist, and made me an appoinatment   I had not really complained to about joint pain.  She made also made an appointment with a Rheumatologist too.   I had recently read on the internet about PA,  her, after talking to her, we both pretty sure that we were right.  The dermatologist and Rheumatologist confirmed it. And, of course, it's also autoimmune.
 
So, that is how I found out why I had been so fatigued and ill for 3-4 years, and I had began to look I had lepresy in places. Also, the joints in my wrists, fingers, toes, feet were almost constantly in pain. My dermatolotist just started me on a new medicine called Humira a month ago which is used to treat this condition. He and my GA wanted to wait until I was weaning off the prednisone.
 
I have gone on and on and on. I can't thank you enough for being here to hear me.  I guess I just needed this time for me to be heard and I amfeeling  very selfish today. I promise not to do this again.
 
BE WELL,
 
Judy
 
 
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/7/2006 5:02 PM (GMT -7)   

Hi,  After reading back through the posts I realized I repeated myself so many time.

Sorry for those who have to hear all this again.

 

Judy


"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2006 2:14 AM (GMT -7)   
No problem, Judy. Better to write it here, even several times, than to have all the info running around in your head. ;)

What is a GA? Is that the same as a primary care physician or general practitioner?

I would definitely recommend a hepatologist, as their speciality is the liver, but you seemed leery of doing that, and currently content with the treatment you are receiving. It still would not hurt to have a consult with a hepatologist and get his take on what is going on with your liver and cirrhosis. You could then make a more informed decision about who should treat you.

Healing thoughts going out to you.
Connie

IALupus
Regular Member


Date Joined May 2006
Total Posts : 78
   Posted 9/8/2006 9:16 PM (GMT -7)   
Hi Judy.
I found out in Jan that I have AIH.  I am on Imuran for it and predisone.  My enzymes hit 2500 before coming down.  I also have Lupus.  I take Methotrexate for it.  I am on 40mg of Predisone at this time for pericarditis.  I have taken predisone for 7 years now with out going off.  (most of the time at the dose of 5mg, except in a flare of some kind then it is raised.)
I hope all goes well for you.
 

SLE 9/99-Autoimmune Hepititis 2006- The list is tooo long for me to type!!  Just ask I will tell.
Most important of the 19 medications is Methotrexate and Predisone.


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/8/2006 11:49 PM (GMT -7)   
Hello IALupus,
I found out about a month or so after you did. I could not take the imuran. It made me deathy ill and my enzymes tripled. I do not know much about lupus, but am finding out a lot of people have it. This is a whole new world to me. Exuse my ignorance.

I have psoriatic arthritis and an onset of diabeties with the prednisone. and bipolar 2.
I know Lupus is autoimmune too. Is it related to the liver? And I do not know at all what percarditis is. I will have to do some research. BTY, I love research. It's something I really enjoy doing so that keeps me occupied a lot . I was so tired for so long before the dx of the AIH that I rarely felt like leaving the house so spent tons of time on the computer.
I wish I could have taken emuran. It would have lowered the dose of prednisone I have had to take, but I had a toxic reaction to it. Iam weaning now and am aat 25. I will be put on another medication. I cannot or stay on pred and add another, I have been told.
I know I need to see a hep doc. I am only seeing a GI specialist. I am working on getting one.
How far has the AIH progressed? Have they done a biopsy?

BE WELL,

Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/9/2006 12:26 AM (GMT -7)   
Hi Connie,
Thank you for all the great information. My doctor told me that my liver function is still good too. I do have bridging necrosis and fibrosis. I am trying to understand it all, but it is hard to sort out. It's great to have this board to share all this with and get the support and freindship we need. I do not know another soul that has AIH except online. Thank GOD for the internet.
 
When will you have the liver resection and what will this acomplish?  I will have to look at my enzyme levels and post them . They started going down as soon as the emuran was gone and the pred up.   Does staying on the pred. all the time cause you much of a problem? I'm afraid of a falre up too, or setback if I go off. I guess it is just one day at time.
 
I"m glad you got your disability approved. I'm sure that took a lot of pressure off you.  I am on it for another disosorder, bipolar 2. . I am glad I got it about 4 years ago because I hear it is really a problem to get on it with AI diseases. I do not think anyone knows how sick these disorders make people if they have not had one or had a family memember with one. For me, at times it was debilitating.  Like you, It took a long time for a diagnosis. I wrote on the bipolar chart about that earlier, about being proactive about our health issues.
 
  I draw disability  mostly off my late husband who passed away in 99, at the age of 49 with a heart condition. I understand about the sleep. I do it when I can.  And I don't care if it's day or night.  Sometimes when the fatigue sets in I have to just sleep and sleep.
I have a great man in my life, Willie, who is very supportive and understands my health issues. He lets me do what I need to do to cope,  and also helps me in every way he can.
He has CHF, but it is well controlled with meds.  I am 54, he is 47. God must have known all this was coming because he blessed me with a very patient, unique man.
 
You mentioned a hepatiis that is caused by medication. Do you know what it is called? My doc seems to think that mine is autoimmune because it is responding to prednisone. But I still wonder if my psychiatric medicatons could have set it off.  But I guess I will stop obsessing about that and get on with thte business of getting better. Thanks everyone for the welcome. I'm so glad to be here too.
I aslso hate the stigma associated with different illnesses, hepatitis being one, bipolar, another. A.I.D.S. , and cirhosis. to menetion some.  Ignorance is very much alive.
 
Well, I wil go.
 
Have a good weekend.
 
Judy
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"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



IALupus
Regular Member


Date Joined May 2006
Total Posts : 78
   Posted 9/9/2006 5:33 AM (GMT -7)   
HI Judy,
Paracarditis is inflamation around the heart.  Lupus takes what ever organ it wants. Depends on the patient.  My AIH is probably related but not because of the Lupus. No the biopsy has not been done as of  yet.  Don't want to add fuel to Ms Lupus's parade. 
Keep in touch and let us know how you are doing!!!
Nicki
SLE 9/99-Autoimmune Hepititis 2006- The list is tooo long for me to type!!  Just ask I will tell.
Most important of the 19 medications is Methotrexate and Predisone.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2006 11:41 AM (GMT -7)   
"When will you have the liver resection and what will this acomplish?"

Judy, it was felt that taking the right lobe of the liver is the only way to make sure that I am entirely free of cancer. However, they have now decided that I should have the hip reconstruction first (Sept. 26th.)

The hepatitis caused by medication is simply called "drug-induced hepatitis." There is no treatment, except to stop taking the offending medication.

Hugs,
Connie

lb2
New Member


Date Joined Sep 2006
Total Posts : 7
   Posted 9/9/2006 3:37 PM (GMT -7)   
Hi guys! Im 27 years old and was diagnosed with AIH at 16. At the time I wasn't to educated on the subject and pretty much relied on my parent's information.  I was put on a VERY HIGH dose of prednisone and weaned off while pit on immuran(azathioprine) and was very successful.  Some inflammation on my biopsy results, but according to the doctors, we caught it early.  I got married a year ago and we were thinking about starting a family.  I had been in remission for so long that my doctor and I decided that I as a good candidate to stop taking the meds and see what happens.  My intention was to be drug free for pregnancy.  Here I am 5 months later and my LFT levels elevated.  Im only at 75 and 128 whatever that means, but it is 25% less than I was at when diagnosed at 16.  I was started on prednisone again this morning (10mg) in hopes that it would go back in remission soon. Now I find myself trying to educate myself more....and to be honest...becoming a hypocondriach.  Can anyone tell me, have you had children?  How did it go?  Have any of your doctors explained to you the prognosis....Im waiting to hear back from my doctor Monday to go over this with him....but honestly...monday seems like forever away.  Any input would be greatly appreciated!!!

lb2
New Member


Date Joined Sep 2006
Total Posts : 7
   Posted 9/9/2006 3:38 PM (GMT -7)   
OOPS...I guess I should have read that over.  My tests came back 75% less than when I was diagnosed at 16....

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/10/2006 12:55 PM (GMT -7)   
Hi,
I'm sorry to hear that you have had to go back on the prednisone after all these years. I hear that the relapse rate is pretty high after coming off the medication. I don't know much about it myself as I am weaning off prednisone right now, or weaning down and I could not take the imuran. To tell you the truth now that my liver enzymes are in the normal range I am really afraid to fool around with getting off it all together. I don't want to risk a relapse. I hear most people have to remain on a low dose of some medication to keep from relapsing.
Continue to educate yourself. It is the best thing you can do right now.. and come here to post. Sorry someone is just now picking up your post and getting back to you. Hope you get this and get back to me soon. I kow what the waiting can be like. I do not know if you can take prednisone being pregnant? Have you done any research on that?

I know you must be upset, wanting to start a family, and having this happen. Keep us posted about what the doctor says, please.

Be Well,

Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



lb2
New Member


Date Joined Sep 2006
Total Posts : 7
   Posted 9/10/2006 3:46 PM (GMT -7)   

Thank you Judy,

Im just glad someone responded.  I am confident that I will be ok and my doctor seems to think the same.  I feel bad talking about my low LFT elevations, but still scared.  It's been so long since my numbers have been out of range. I was so nervous to come off the medication back in April, but got used to it and actually felt fabulous.  I was going for monthly bloodwork and according to the doctor we caught it early.  My husband and I agree that my health comes first, which definitely helps...I just want to be normal.  My mother keeps telling me that I will be able to live a normal life, I just need to hear it from the doctor!  I'll talk to him tomorrow.  If you don't mind me asking, how long have you been dealing with AIH and has the doctor given you any prognosis?

 

THANK YOU!

LB2


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/10/2006 4:19 PM (GMT -7)   
"Does staying on the pred. all the time cause you much of a problem?"
Judy, I neglected to answer your question. I do not have AIH (have hep C) and do not take Prednisone. I had taken 2 capsules about 30 years ago for arthritis in my neck, and had a psychotic reaction. I was having auditory and visual hallucinations that went on for days, and I couldn't sleep. Went to the ER and they put me on Thorazine for a week, as though they were treating someone on acid having a bad trip. It really was like that, though. With having avascular necrosis (AVN) and the knowlege I have now, I would have to be held down and hog-tied to take Prednisone. I am so sorry you guys with AIH have to take it. It causes AVN--in fact, is the leading cause of it--as well as hairline fractures. I know it is a miracle drug for some conditions, but the side effects can be horrendous.

LB2, welcome to the forum. You bring up an interesting thought: Is AIH inherited? I am sure you would not want to get pregnant while on Prednisone, so I hope you can get off of it soon. Best of luck!

Connie

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/10/2006 9:27 PM (GMT -7)   
Hi,
LB2, I am glad you have a good support system. It sounds like things are under control and that you have a good doctor that is on the ball. Your husband and you are thinking exactly right , your healh does come first. I have heard that a large percentage, not sure exactly what, but can get the numbers, relapse after being totally off all immuno-suppressant drugs. I hope they can keep you on the lowest possible dosage of prednisone, and that you can go back into remisson.
The numbers you are talking about are tests they do. I have the names of them, and have a copies of mine that I keep. They are alkaline phosphaatase, ALT, AST. I think that is right. That is ususlly what they are looking for in the metabolic panel they do. the Liver enzymes. They did other ones on me including ANCA ASCA, which I think are markers for AIH, also hep. A, B, and C. They all came back negative. So they did not know if it was AIH unless it responded to prednisone. I have a lot of info saved on my computer if you would like for me to send you some of it. I do a lot of research and would be glad to do that.

Connie, I'm sure the prednisone isn't doing my body good, but I didn't have a choice. I am taking lots of calcuim, and B. and hope that helps.
What a horrible expeience with prednisone. I had a problem getting used to the dosage and a few times I felt a little psychotic myself. I had to take anti anxiety medication. There were times when I was so euphoric I felt like I could conquer the world. lol.. My AIH group waned me that this was the prednisone, and to remember not to overdo it. I had so much energy and had been fatigued for so long that it was a welcomed change.
I have been on prednisone since March when I was diagnosed with AIH. I won't repeat everything that led up it, it's above on one of my posts. My liver is pretty compromised. From the biopsy results, the prognosis is not good if they cannot get me into remisson, it will progress to cirrhosis. I have what they call bridging necrosis, and fibrosis. I have reseached this a lot and it's not good, but I am hoping for the best. I had elavated enzymes for about 3 years before I was referred to a GI doctor.
I'm weaning down to a lower dose of pred as planned after about 5-6 months on it. I am hoping that being on it, at that high dose, for the last 5 months, will not leave any lasting effects. I am down to 25mg now from 40 and am really feeling the effects, fatigue mostly, and moodiness, tears, ect.
I'm heard that is exactly what happens. At 20mg. I see the doctor and the wean gets much slower from what I understand, and the blood tests more freguent.

I think there is a good chance that autoimmune disease can be inheritied. I also think stress is a factor. The stress in my life has been tremendous over the last 8-10 years. There were a lot stressful things that happened including the deaths of my mother and husband 18 months apart.

I don't know about AIH being inheritied and I don't know what the research says. But I do know that I have read that our bodies can be predisposed for autoimmune diseases. Who knows? I sure wish they would find out what triggers it so others won't have to suffer.

My mother had psoriasis, like I do. Hers developed in her 40's. compared to mine, hers was like 50 times worse. Stress seemed to flare it. She went out of town to Nashville for light treatments because we didn't have anything like that in our hometown. In the summer she cleared because of the sun. She spend lots of time outside working in the yard and would sit in the sun for light therapy. My oldest daughter has had psoriasis since early childhood, but it is mild compared to what I have. I had never had a spot on me until about 2 years ago, I'm 54.. It progressed slowly, and joint pain started before the ps. did. I Connie, what is your prognosis with AVN?
I have written more than I meant to. Write me back.

Be well,

Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."


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