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Regular Member

Date Joined Dec 2005
Total Posts : 446
   Posted 12/10/2006 4:54 AM (GMT -7)   
sad  Just needed to put my thoughts in writing. 
Even though my liver function is improving, bilirubin is normal and albumin is getting better every blood test, the liver doctor wouldn't allow me to reduce my Prednisone for another three months.  I was so disappointed.  I managed to hold the tears until i reached the bathroom, after my appointment.  He said my liver is still "on the edge" and it's better to be sure.  He's worried that if my liver decompesates again, an increase in Prednisone may not work as it has in the past. Twice before I have had a relapse at this stage but this time, I was sure the chinese herbs and acupuncture was going to make such a difference.  Anyway, disappointed is an exaguration.(I'm sure the spelling is wrong but can't find my dictionary)  I was devastated.  Still on 10mg a day until March, then we may drop to 9 for 6 months, 8 for 6 months and finally in 15 months time I may get to 7.5mg. 
Thanks for listening.  Even if no-one reads the post I feel better for having typed it.
I know what he says it right but it's still hard. And I certainly don't want to become as sick as I was in 2004.  The thing is that I feel so well.  I don't feel sick or tired at the moment.  The only thing that reminds me of my illness is the medication taking and the fact I can't drink any alcohol.   

Regular Member

Date Joined Aug 2006
Total Posts : 469
   Posted 12/10/2006 6:23 AM (GMT -7)   

I am so sorry that you didn't get the decrease that you wanted. I completely understand that even know you know he is right it doesn't make it any easier. I hate to leave the doctors office in tears and feeling like that and I have so many times. I spent two years before I got a diagnosis and saw four doctors that kept saying "I dont' know what is wrong but something is". I left so many times trying to hold back the tears and feeling so disappointed after having my hopes up. I too am on 10mg of prednisone a day, It us a constant reminder that something is wrong. Please keep your chin up. It;s ok to be frustrated and angry at this disease sometimes. Just wanted you to know I understand.

May today be better for you. Will keep you in my thoughts.


Veteran Member

Date Joined Mar 2006
Total Posts : 605
   Posted 12/10/2006 6:27 AM (GMT -7)   
aw marg,im sorry you had such a disappointment,,,:Huge hugs: keep focusing on the fact that you dont feel sick or tired,,,,that is a GREAT feeling marg,,,and having to take medication is making you feel not sick or tired,,,,Im glad your dr is being so careful with you,,,you dont need a setback holding you down with the full life your living,,,,,,and think of that baby granddaughter of yours as you take your medication,,,,she can be you "spoonful of sugar" ,,,,,:huge hugs again: take care and i hope this depression passes quickly so you can enjoy feeling good,,,,
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!!!" 

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 12/10/2006 8:27 AM (GMT -7)   
Hi, Marge! I've been away for a while, having surgery on my hip and healing, but I do read once in a while. Remind me what the Prednisone is for, if you don't mind. You know that venting helps, and this is a good place to do it!


Regular Member

Date Joined Jan 2006
Total Posts : 402
   Posted 12/12/2006 10:14 PM (GMT -7)   

Hi Marg, Sorry to hear you are feeling in the dumps. I know you are  disappointed, but you do have some good things happening like your lab values. I think it is wonderful that you are feeling so much better, from the chinese herbs and the acupuncture. I know this doesn't help with the disappointment, but I am glad your doctor is careful with you! Big ((((HUGS))))


Regular Member

Date Joined Dec 2005
Total Posts : 446
   Posted Yesterday 3:01 AM (GMT -7)   
Thank you all for your support. It's wonderful to have friends who understand and are prepared to listen and support. I'm OK with it now. the disappointment becomes less as the days go by and as you all say i am vert fortunate to be feeling so well. The meds are sure doing what they are meant to do.

Connie, the Prednisone is the only treatment at present for autoimmune hepatitis. Even my chinese doctor says keep taking it. One day he misunderstood and thought I was going to cut the dose myself and he became quite alarmed and insistent that I keep up the dose my heptologist suggests. He does believe however that eventually I will be Prednisone free, unlike the heptologist, gastrologist and GP I see. Their knowledge of the disease is that there is a lower limit each person reaches and going any lower brings the symptoms back. It's unlike most autoimmune diseases in this regard.

Hope the hip is healing well. I saw a hip replacement on a medical show on television a few nights ago. What an amazing operation. there are so many medical miracles.

Hope everyone is felling good.
Take care.

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