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Son's condition w/ulcerative colitis now auto immune hepatitis

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Posted 9/7/2008 2:26 PM (GMT 0)
Thank you all and my prayers are with you all. This site is awesome. It let's us know that we are not alone and by sharing our info. it is helping others emotionally and physically. Please keep the posting coming, I appreciate them all.

Motorcycle Mama
Posted 9/7/2008 9:36 PM (GMT 0)
I am with you Motorcylce Mama. I truly appreciate everyone here.
Posted 9/18/2008 6:17 PM (GMT 0)
Hi Motorcycle Mama,

I can feel your son's pain, I have AutoImmune Hep diagnosed by a liver biopsy. I also have an underactive thyroid. I was diagnosed with that about a year ago, I went in for a physical and the doctor learned about that. So I have been on the thyroid medication for about a year + now. It wasn't until I got strep and had to take antibiotics that I became jaundice and learned that my liver enzymes were really elevated. I no longer take any over the counter medications or anything other than the meds prescribe by the doctors. I know what you mean about the medication that suppresses the immune system - i didn't quite understand that and it made me nervous as I work in an industry where there is a lot of interaction with other people. A few of my friends say i have OCD now because i use hand sanitizers all the time, clean my desk at work like every day and at home too! LOL But i think I may have had that before all of this! (smile).

I would like to let you know that I feel a lot better. I have learned to listen to my body... when I'm tired, I rest. I've always had a pretty good diet, but I try to be sure to include foods that are good for my liver such a fish, vegetables. I drink plenty of water too! I have learned from this forum that even though this disease is very serious, it is manageable... and with your son being so young, I am sure that he will be able to bounce back quicker than some of us.

Your son is in my prayers as are you because I know as a mother it has to be hard to witness your child in this state. I was so worried about my parents because they were worrying about me so much. My older brother lives in another state and he came up to visit while I had jaundice, he never let me see him sweat but I learned later that he broke down in tears when he was away from me...

Through research and knowledge of the disease I think it can be managed... and through prayer and support, you will make it!

LADY L
Posted 9/20/2008 3:27 PM (GMT 0)
Lady L,

Thank you so much for your prayers and support.  I have been worried about the doctors not being concerned about my son.  They told me that when he started the Imuran that he needed a blood test every week for 3 weeks then every month for 3 months but they wouldn't send me the blood test forms and I can't get the tests without them.  A week late I did receive that forms.

Earlier I called to get the Imuran but the operator transferred me then when that extension wouldn't answer and I got switched back to the operator the recording said that they were closed and wouldn't reopen until Monday.  After I finally got the prescription then they gave him a larger dose of the steroids and this scares me because without a blood test how do they know that the steroids need increased from 10 mg to 20 mg.  I have tried 3 times in the last week to call them and all I get to do is leave a recording.  I am so frustrated because it seems like my son isn't important enough for them to return a call. 

Please keep your prayers and good words coming because this posting place really keeps me going.  Our prayers are with all of you.

Thank you all for your support,

Motorcycle Mama

Posted 9/20/2008 11:48 PM (GMT 0)
Motorcycle Mama.

I can tell you that doing all that blood work initially when your son starts imuran is "normal" at least it was for me. In my case they did full blood work, although I am not sure what all it may affect initially, but they were not looking at just the liver enzyme levels. It does seem confusing that they would increase your son's prednisone without discussing it when adding another immune suppressant. I hope you can get ahold of the doctor soon so that if they have made some mistake it can be corrected quickly. I have been known to show up at doctor's office and ask to speak to my doc's nurse in person before, so I would suggest if you continue to not get a response from them you might try that (at least your son should). My continued prayers and postive thoughts are with you.

Lucy
Posted 9/26/2008 10:16 PM (GMT 0)
Lucy, thank you for your response. The medical doctors nurse said that they gave Eric the medicine so he wouldn't hurt. I asked her where they got the idea that he was hurting. She couldn't answer me. Sometimes it seems like the medical doctor is trying to take over for the specialists. I try to keep this separated. The nurse said that we can cut the pills in half and get a 10 mg that he is taking.

Monday he is to see the medical doctor about his thyroid but I'll bet he will tell me about his liver to. Thanks again for you concern and prayers. Our prayers are with you.

Motorcycle Mama
Posted 1/25/2009 12:59 PM (GMT 0)

My 16 yr old son was diagnosed with AIH in June.  They put  him on 40mg of predisone and we tried imuran but he broke out in hives and also dropped his white count way to low.

His numbers were slowly coming down and spiked in November to 1400.

We just went this week to Cleveland Clinic and are going to start on Cell-Cept with the predisone.  Can anyone tell me what to expect pros and cons of Cell-cept? 

I believe his AIH was caused by his MMR vaccine at 18 months.  He had a terrible reaction and developed erythema multi forme (severe rash) after it was given. He continued to develop the rash prior to any virus or flu would break out again throughout his life.  They always said that his immune system was over reacting and treat w/ benedryl.

Would appreciate any input.

Blue-Rosebud

Posted 1/25/2009 2:43 PM (GMT 0)

Hello blue-rosebud and welcome to HealingWell.   First I would like to tell you how sorry I am that your son was diagnosed with AIH. 

We do have numerous members that have it .....I myself am not experienced with with or the meds for it. 

Secondly I would suggest that you start a brand new post so that the other members who have the experience will not miss this post. This is a very old thread and I wouldn't want anyone who may have some knowledge or suggestions concerning to over look it.  

Take care........thoughts and prayers........

Posted 1/26/2009 12:56 PM (GMT 0)
Hi blue-rosebud and Welcome to the forum.

I also have AIH and take prednisone and imuran along with urso and several diuretics. I have not taken cell cept although what I have read about it that it is a quicker actting immune suppressant than imuran, which takes about six months to reach a therapuetic level. You should be able to google it and find out specifics concerns and side effects of the medication. I also go to Cleveland Clinic to see my hepatologist and they are wonderful there about explaining things and taking time to discuss any concerns. As cell cept is an immune suppressant it is important that your son be cautious being around others that are ill. I know I have a tendency to catch "bugs" much easier than i used too. Please keep us posted.

Lucy
Posted 1/27/2009 11:58 PM (GMT 0)
Sweetmama

I just curious if you connected with a Dr. at Vanderbilt that you can communicate with.  I vaguely remember you having a problem with that.  My husband sees Dr. Porakyo at Vandy.  It took us a while but we have grown to like the Dr.'s there.  Especially our coordinator.  I hope you are well.

JoAnn

Posted 1/31/2009 3:39 AM (GMT 0)

Hi, everybody!!  I have autoimmune hepatitis, crohn's disease, hi-grade colon dysplasia, and just for fun, I also have sarcoidosis.  Har de har.  I want to emphasis how hard it is to get good treatment and how valuable it is.  Keep in mind, though, that pharmacology is an art, and it is sometimes inappropriate to compare one person's treatment to another.  You will go crazy and get more anxious mad . mad  .

All the meds have side effects, and I have been on prednisone, immuran, cellcept and asacol. 

I find that second guessing never helps and I just plan about how each day is going to go and quit trying to plan out everything all of the time. 

Keep posting and keep asking. Many sickees here to help, and it is a no "BS" zone.  (is that allowed////)

Pix

Posted 1/31/2009 3:44 AM (GMT 0)

Hi, Pix!  Have you posted here before?  Your user name sounds familiar.  You have a lot going on, but have given good advice.  Continue to take care of yourself as best as you can, and you are right--it's impossible to plan too far ahead.  If you do, be prepared for last-minute changes!  smilewinkgrin

Welcome, if you have not posted here before.  And I believe the abbreviation you used is acceptable.  wink

Posted 1/31/2009 1:15 PM (GMT 0)

Dear Hep93

Yup, I post regularly on Hepatitis and Crohn's sites. My daily health is actually very good, so i look worse on paper than I do in real life.  I hope you are doing ok, and thanks for being our moderator.

Posted 1/31/2009 3:18 PM (GMT 0)
Hi pix,

I noticed you have Crohn's disease. My Husband does as well. He was diagnosed in 1993 and suffered years of issues with flair ups. I don't know if yours is active or not. I wanted you to know that my Husband's Crohn's disease has been in remission since January of 2002. This after 4 Remicade IV infusions over a 2 month period.

You may already be familiar with this treatment, but just in case, I wanted to share it with you.

Thanks,

Penny
Posted 1/31/2009 7:12 PM (GMT 0)

Thanks, Pix!  I know what you mean about your condition looking worse on paper.  So does mine.  I actually look quite healthy and probably feel better than I should, all things considered.  Even my blood work is not terrible.  smilewinkgrin

I hope you see Penny's post above.  That info could be helpful to you or others.

Posted 1/31/2009 7:15 PM (GMT 0)
Thanks. I am doing well on just Asacol. Remicade is great!, but I haven't needed it . I appreciate your information, and thanks for caring for your husband.....
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