treatment for AIH

 I was recently diagnosed with AIH - currently on tapering prednisone schedule and uploading azathioprine.

For those of you being treated please tell me if also on same treatment and how doing on the azathioprine?

Like clockwork I get a wave of nausea and weakness that comes over me within hours of taking it.

thanks Chris

Hi Lucy,
I don't know if you remember me. I was on for quite a while and haven't been for awhile. I am down to 10mg also and am experiencing extreme fatigue. How bad is yours? Do you know, from the information you have, if it gets worse as you go down further. I have heard this. I go to the hepa doctor for the first time on Monday.
I've been seeing a GI doctor since last May. I have never felt so tired in my entire life. I'm also losing my hair, having sight problems, am concerned about bone loss, and am going to get my doctor to order a bone density test asap. I've been taking extra calcium, and it seems like I crave the yogurt I eat. I guess my body is craving calcium. I've also had high blood sugar as a result of the prednisone. It's been a life saver and a curse too.

Hope to hear from you or anyone who writes.

Judy

Hi Judy

Welcome back of course I remember you

The fatigue has been horrid like it was before meds at all and yes I have heard the lower you go the worse it gets too. I talked with my hep doc and they have taken me off the imuran. My last blood work showed my liver enzymes were up and my white cell count was too low. I can't believe your hair is coming out too! Mine had been coming out so badly in the shower that it was stopping up the drain. My doctor says it was due to the imuran so I am really hopeful that things will get back on the right track again soon. My appointment with him again is in about two months and he is going to try and alternative to go along with the prednisone. You are certainly right the pred is both a blessing and a curse.

I hope you hepalogist appointment goes well. Please keep me posted.

Talk again soon

Lucy

Judy, I just wanted to note that the medicine you mentioned is spelled Provigil. :)

Hi Lucy and Judy,

Imuran did not present any side effects with me. I took it for 12 months but my liver enzymes did not reduce enough with these two meds. (Prednisone). Apparently, when they are combined, you are able to wean off Prednisone more successfully. Any way, you may have read in my other post, I have been on CellCept for about 12 months now and my liver enzymes are almost normal, in fact some of them are now in the normal range and a couple just a bit out. It's very expenslive, but my heptologist get permission from the drug committee each six months and so far I have not had to pay the huge price ($550 Australian dollars each month)

I take Fosimax-O-Weekly for my bone density. You should ask your doctor about it. I have a bone density test each year and my bone density has actually increased, despite Prednisone and an expected 3% loss each year due to age (I'm 58)

My depression reached a stage about three weeks ago where I would not go out and was sitting at home crying almost all the time. I tried exercise, or my husband tried exercise by taking me walking twice daily) but often I cried as we walked around the local oval. He tried retail therapy (must have hurt him greatly to suggest we go shopping - but I guess it also shows just how much he loves me and cares) but i would just cry when we looked at clothes thinking how terrible I looked in anything I fitted on. Finally the doctor has given me Lexapro (I think that's how you spell it) and I am feeling on top of the world. I have just had a weeks holiday with my three sisters-in-law. We shopped, watched the Australian Tennis open (three days), laughed, ate too much and not a tear from me. My husband is so happy with the new (old!!) me.

Just thought I'd share my med sttory with you as well.

Take care everyone.
Marg

Marg,
I am so sorry you went through such a bout with depression,,,,,,,it can be awful! There is NOTHING wrong with taking meds to help you feel better,,,,depression can add stress,which is NOT good for your body,,,with all that you have been through, depression is almost normal,,,,,,I am glad they gave you a good anti d to help you and that its working,,,remember not to stop the anti d's without the dr knowing it,as it can send you into a tailspin,,,you must be weaned off most of them,,,,enjoy feeling good Marg,,,sounds like you had a great vacation,,,,well deserved:)

Hi ChrisNC - I was diagnosed with AIH 3 1/2 years ago.  I was originally treated with predisone and then tappered off and I am currently on Imuran.  Fortunately, I have not suffered from fatigue or had a depression issue.  The only side-effect has been the hair loss which has slowly decreased due to the fact that I am slowly tappering off Imuran as well.  I am currently down to 12.5 mg of Imuran every other day.  I had lab work yesterday so hopefully after this last tapper the next step will be to stop taking anything altogether, although my Dr. does not suspect I will ever be able to stop taking Imuran.  He has not had a patient yet that has been able to stay in remission without taking either Predisone or Imuran.   Good luck and hopefully things will get better as they have for me.

Hi
My husband was just diagnosed with AIH. He is 36 years old and up until now has been very healthy. The GI dr. said the liver biopsy shows minimal scarring but it has really been a blow to us thus far. I am glad to be to come to a site like this and read other's stories.
Thanks
Cryssi

Hi Cryssie,

Welcome to the Forum. I hope you get as much support and friendship here as I have.

I am living a full life with AIH, despite the recent depression. I work 4 days a week, have a good social life and family and generally feel good. In the back of my mind is the thought that this may not last forever and my heptologist reminds me each visit that my liver condition is "on the edge", and a tip the wrong way could result ultimately in the need for a liver transplant. I get annoyed that he reminds me each time but I know he must do this so I look for symptoms and report immediately any change so I don't go into liver failure again.

On the positive side it's almost three years since my diagnosis and things are stable, even though I have cirrhosis. Regular blood tests (monthly), a yearly liver ultra sound and bone density test, monthly visits to my GP and 3 x monthly visits to the heptologist, Prednisone (tapering) and CellCept, Fosimax for my bones as well as accupuncture and pills from a Chinese doctor are keeping me well. (edited to add ...AND POOR) Lexapro for the depression is soon to be a thing of the past as I learn to think more positively about the good things I have.

Hope your husband becomes one of the AIH success stories.

Take care.
Marg