ALOHA, Newly diagnosed with AIH and confused

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808Mama
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/28/2014 12:52 AM (GMT -6)   
Aloha everyone! Long story short it took my PCP's nurse practitioner to recommend a blood test after 4 months of my persistent headache not going away after taking every over the counter and Rx headache/migraine medicine under the sun with little to no lasting relief and the nurse prac recognizing (thankfully!) that the headache/migraine may be a symptom of something greater.

Fast forward 4 months and a few weeks after taking the blood test, an MRI and a scan and eventually a liver biopsy I'm told I had AIH (which I didn't know existed prior to having it!) and needed to see a specialist. I was admitted for a week after seeing him and told I had 20% liver cirrhosis. Put on 60 mg of Pred in the hospital along with 20 mg Protonix and 20 mg Imuran and initially saw positive changes.

My appetite returned, sleepless nights seemed to be behind me and I had a 'happy' outlook on life. That was in April, now 4 months later I'm back to joint and bodyaches, headache returned almost 2 weeks after being out of the hospital and I barely eat or sleep yet have gained 30 lbs. (which fluctuates week to week it seems) and have a bad attitude with mild depression.

I'm now off the imuran but remain on the Pred and Protonix and now told will need to supplement it with 500 mg of Cellcept (though I'm not on a transplant list nor due to receive one that i know of). I'm told because i've had unstable reactions to the Pred and they can't seem to taper me off (numbers jump up when they try to taper even 5.0 mg) they're hoping this will help. I'm confused on their methods since in all that i've read it seems Cellcept is for those who have had transplants and at what seems like a high dosage to me is now going to be ADDED to the pred until they can taper it down from its current dose.

I've started seeing a new PCP who recommended I see a Psychologist since I've been struggling to cope with AIH and every day my 'symptoms' are new and my family doesn't know how to be caregivers to me when I can't communicate what i need or how I'm feeling when it seems to change daily.

Living here in Hawaii there isn't a 'support group' which was another reason I started see a psychologist. Despite only a few sessions, I fear that unless they're in the 'know' of what AIH is and how to assist me in dealing with that, they'll just be another resource that can't really understand what I'm going through and I'm finding this forum more valuable since though our experiences differ, you're able to at least relate to where I'm at or what I'm going through.

Lastly, if anyone is in a similar predicament regarding the need to take Cellcept (generic version, Mycophenolate Mofetil) can you let me know your experiences, thoughts about taking it along with Prednisone?

Prior to all this i barely got sick so I think my body is rejecting the meds. I'd prefer a 2nd opinion and a natural route but here in HI there are limited experienced doctors I'm aware of outside of the office of the top Hep Dr. I already see on island and seems the natural route is discouraged.

Hopefully Cellcept will counter my current 'sicky, achy, nausea, constant-headache' feeling which is what the doctors are hoping for. Any/all help is greatly appreciated. Thank Goodness God sustains me through this all!

Living in HI with saving grace, appreciate the feedback, thank you in advance

***
ALOHA..I changed your title so we would known it was an AIH post. Ill write more when I get home. We had post TP clinic today. Mama Lama-Moderator.

Post Edited By Moderator (MamaLama) : 8/28/2014 2:46:25 PM (GMT-6)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 8/28/2014 7:40 AM (GMT -6)   
Welcome to the Hep forum! We have people posting with various liver disease here, as well as those who love them. I don't have the answers you need, but one of our members with AIH should be along soon to help.

My husband is on a transplant list after at least 3 decades of Hep C damaging his liver. He was not aware he had any problem until stage 4 cirrhosis was discovered in a routine physical. His only symptom at that time was abnormal fatigue. I understand how shocking these dx can be. Hang in there and again, welcome. Big Hugs
themiz, Forum Moderator-Hepatitis

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/28/2014 3:03 PM (GMT -6)   
808 Mama: I've emailed our AIH mod and a member from the UK who moderates an AIH forum over there....both have the disease and are very familiar with its ups and downs.

One of your problems is that AIH is relatively rare and many doctors do not have a lot of experience with autoimmune disorders and AIH in particular.

Left untreated it can lead to liver failure. But diagnosed and then properly treated, most with AIH lead pretty normal lives...marry, have children, etc.

However, the key is to have the right medications for your particular situation and I hear in your "voice" that you are struggling to find the right combo of meds to get your initial "flare" under control.

I looked around and find that you are quite right, the choices for docs treating liver disease in Hawaii is flim. I did find a center on Ohau with a Dr. Wong who seems a strong player in the liver disease, transplant world.

Here is the contact information: www.uhcancercenter.org/about-us/directory/faculty-staff/2-directory/80-linda-l-wong-md

Click on this link and find out about her and her program.

My partner had liver cancer, hep C, and alcoholic cirrhosis. His liver was decompensated, which means it didn't work any more and he needed a transplant or he would die. He did get that transplant and is doing well. However though AIH also can cause a liver to become cirrhotic, the progress of the disease can be slowed or stopped with proper meds.

Mike has taken lots of pred in his day, and was on Cellcept (and Prograf) for anti rejection of his new liver. They use an anti-rejection med for your condition as well. Once one of our senior AIH members logs on you will get much more information.

Towards the top of this forum there is a blue bar with SEARCH one of the options. Type in AIH there and you will be sent to a list of the threads that are particularly about your topic...that is why I changed your title, so other folks could find these posts and find our more when they have a new diagnosis.

Hugs...Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 8/28/2014 8:24:18 PM (GMT-6)


AIHer
Regular Member


Date Joined May 2012
Total Posts : 196
   Posted 8/28/2014 3:12 PM (GMT -6)   
Hi there

Mycophenolate mofetil (CellCept) is used quite often in AIH especially when azathioprine (Imuran) doesn't work or people can't tolerate it. It works well for most people.

It is used after transplant as well but what we people with AIH need is something to suppress the immune system - just like people after transplant.

500mg is a very low dose so I assume the doctors think that this combined with the low dose of pred will keep things under control (pred works in a slightly different way and many people with AIH need both pred and an immunosuppressant). Or perhaps they are starting low and intend to build up.

I have been taking CellCept for 11 years now (have had AIH for 15 years) and find it great. I take 2g a day (so that is 4x500mg tablets) don't need any pred and just swallow my tablets every day and get on with things.

I know loads of people with AIH - it can take some time to find the right medication for you as an individual. So hang on in there. Things will improve.

Ann

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 843
   Posted 8/28/2014 3:42 PM (GMT -6)   
hello 808mama!
 
When I was first diagnosed I started on 40mg pred and 500mg (twice a day) of CellCept to get things under control quickly.  Azathioprine takes a couple of months to rally kick in.  So once my numbers started improving I added 50mg/day azathioprine on top of the other two.  When I was taking that for 2 months, I dropped the CellCept and then continued on my pred wean.  The immunosuppressants will help you wean off the pred, they are considered "steroid-sparing" mediations.  As Ann said, we require the immunosuppressants just as transplant folks do so that our systems don't decide to attack our livers again.  Picture it that way to understand, a transplant patient is at risk of rejecting their new liver.  We are at risk of our bodies rejecting our native liver as our immune systems got confused by some switch in programming, if you will, and attacked our liver...so we need to stop that from happening again...that's why they treat us like transplant folk.  Does that make sense?
 
If your doctor tries to wean you off the pred too quickly, you can have more chances of joint pain etc.  How much pred are you on now?  The protonix is there to help your stomach as pred is very hard on stomach lining.  I'd also recommend asking for a baseline bone density test.  Pred thins bone so you want to stay on top of that.  Has your doctor discussed multi vitamins and calcium with Vit D supplements with you?
 
I've had AIH for over 7 yrs now and am like Ann in that I pop my pills and get on with my day. I'm hopeful you'll get there too, it just takes some time to sort out the best way to treat you.  Everyone is different and there are a few different meds we can take if we find some aren't working. 
 
You may want to also ask your doctor about Entocort (budesonide).  It's a steorid that acts a little differently than pred and has fewer side effects. 
How often are you having your LFTs (liver function tests) checked?
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

schimbare
Regular Member


Date Joined Mar 2012
Total Posts : 462
   Posted 8/28/2014 9:49 PM (GMT -6)   
Aloha!

I am sorry you are suffering right now. A surprise disease is no fun.

I'd see the best liver MD that you can find that you can get to. Someone with experience dealing with the disease is best, as it seems that all of us with AIH have slightly different drug choice and dosing needs to achieve the optimal result.

I was weaned off pred and imuran over a two year period. For about a year, I was kept at one dose, then the imuran, actually was stopped fairly abruptly, as I recall, but the prednisone was tapered over what seemed to be an interminable amount of time.

It is my opinion that many MDs taper the prednisone too quickly. I used to beg my MD to taper on a more rapid schedule and he always refused. Despite that I started treatment with cirrhosis, I never had a flare up of the disease, and it has been about 17 years. The prednisone made me crazy and hungry all the time, so I got a nice SSRI to calm me down, and I eventually took of the weight. I got out of my extremely unpleasant marriage, and started seeing a shrink. That is what I did, among other things.

I hope my experience can be of assistance to you as you go through this difficult time.

Susan
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