New member with AIH & Cellcept Questions

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buderflyz
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/25/2010 4:24 PM (GMT -7)   
Hello. I'm 39 & new to this site. In October of 2009 I was diagnosed with AIH & Level 4 Stage 4 Cirrhosis. I was started on Prednisone and Imuran. Recently while attempting to wean Prednisone, my liver enzymes started to rise again. With this, it appears my body has not responded to the Imuran. This week, Imuran was stopped and Cellcept 1000mg twice a day was started. I have noticed being VERY sleepy and even more fatigued than usual. I wonder if this is because of the Cellcept.

I would like to hear from others who have been treated with Cellcept & how you have responded to this drug.

Thanks,
Elizabeth

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/25/2010 4:48 PM (GMT -7)   
Hello buderflyz, I'm trying to understand why you would be prescribed Imuran (similar to Cellcept), prednisone and then Cellcept, unless you have had an organ transplant. I take Cellcept 1,000 mg. twice a day, because I received a liver transplant 7 months ago. Prior to that my Hep C, had amped up to level 4 and I had cirrhosis for about 4-5 years. I had a liver that was failing and was taking a multitude of meds, but no anti rejection meds. That's why I ask about you taking Cellcept. If you haven't had a transplant, what's the purpose? If you're feeling sleepy and fatigued, it's more likely to be due to you liver starting to fail. Do you have any encephalopathy? In addition to Cellcept, I take 3 mg. of Prograf per day. Are you seeing a hepatologist? **David**

buderflyz
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/25/2010 5:05 PM (GMT -7)   
Hi David, thanks for your quick response. I have autoimmune hepatitis (AIH) so my immune system rejects my very own liver. My immune system has done so much damage that I now have cirrhosis. This is all new to me. My hepatologist is mainly focused on the AIH so we can get that under control to stop further damage. Once I'm stable, we will do another biopsy to determine where to go from there. I don't know a lot about encephalopathy. I do have some brain malfunctions, so to speak, my doctor thinks is more related to the Prednisone. Have you had any problems with Cellcept?

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/25/2010 5:12 PM (GMT -7)   
None that I'm aware of. Prograf is more obvious, slight tremors in my fingers, raises blood pressure, predisposition to type 2 diabetes. Pretty minor. My email is dgoodman@nantucket.net . Get in touch and I'll send you more info. **David**

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/25/2010 5:45 PM (GMT -7)   
Welcome to the forum, Buderflyz.  We do have several members here with AIH, so maybe they will be able to help your with your questions.  I know the usual treatment is Prednisone and Imuran, with then being able to get off the Prednisone or reduce it to a minimum while being on Imuran instead as a goal.  Since the Imuran didn't work for you, apparently your doctor is trying CellCept instead.  In the literature, sleepiness was exhibited in very few patients.  But who knows?  You could be one of them.  Or, as David said, it could just be the result of a diseased liver.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/25/2010 9:08:02 PM (GMT-7)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/25/2010 5:57 PM (GMT -7)   
I feel a little stupid, not thinking about your liver rejecting itself. There was a young woman I met in the transplant clinic, a couple of weeks after my surgery (and hers). She had AIH and had a live donor transplant. She never told me about having been on anti rejection meds, though come to think of it, I never asked (and she didn't volunteer). As I said, I'm unaware of any problems from the Cellcept. It sounds as if you could be a candidate for a transplant. What's your MELD score? I have another site with folks with their own reactions from taking Cellcept. **David**

ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 2/25/2010 5:59 PM (GMT -7)   
I was diagnosed wih AIH in 2007, at age 45. Hepatologist rx. 3000mg. of cellcept, and high dose prednisone. Meld was 20, bx dignosed cirrhosis. Placed on transplant list. Gradually, my health improved. LFT's are normal, meld is 8! I still take 1500 mg. of cellcept/day and 5 mg. prednisone, and am off transplant list. Fatigue goes along with the liver disease, but there are side effect to this medicine. My Dr. wants to wean me off cellcept in the fall (3years on cellcept). Good luck to you.

amyuk
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 2/26/2010 7:50 AM (GMT -7)   
Hi Elizabeth
 
I too have AIH and have been taking cellcept (like you 2 grams a day) for 7 years now (I reacted to Imuran so was switched to CellCept and came off the prednisolone as soon as I could as the side effects were too much). I think the intention is for me to stay on it for ever.
 
I haven't heard of sleepiness as a side effect but if you look at the long list of side effects I always think that it could cause anything at all!
 
Are you on very regular blood tests to make sure that your white and red cell counts are OK? I understood that these should be done very frequently to start with on CellCept.
 
If they are OK perhaps you could talk to your doctor about possibly reducing the dose then building up again if the fatigue doesn't improve? Just a thought.
 
Amy

buderflyz
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/26/2010 9:21 AM (GMT -7)   
Thanks for the welcome hep93. By the way, I love the quote on your signature!

David, please don't feel stupid! Sometimes things totally escape me too! For example, Sunday I told myself I should empty my cat's water bowl. Well, I picked it up and emptied the bowl alright. I poured it out on the counter beside the sink. I guess my brain wasn't shooting on all cylinder's at the time.

Ailsa, I'm glad to hear your story has turned into a good one! Do you have cirrhosis?

Amy, it's nice to hear from someone who has taken Cellcept for a while. I'm a little nervous about it. I told my Hep on Monday that I'd rather take a more potent drug and have some quality of life than to continue with high dose Prednisone and just survive life. I'm getting labs done every two weeks. That includes a LFT, BMP, and CBC. My GI referred me to a Hep in October because he thought I may be up for a transplant. The only time a transplant has been discussed by the Hep is when I asked him about it. He said that would only be considered when my liver was not compensating and as of now, it is. This Hep was big on informing me that 85% of patients with AIH go into remission. Transplant is no where on his radar. Neither of my doctor's have discussed a MELD score with me.

I'm a bit frustrated that neither doctor has said anything much at all about the the cirrhosis and how it will effect me. They have been mostly concerned with the AIH. Does anyone have any ideas on how I can learn more about how my particular grade and stage of cirrhosis will effect the rest of my life once the AIH is controlled?

E

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/26/2010 11:11 AM (GMT -7)   
Hi Buderflyz and welcome. Check our educational thread in the resource folder at the top of our forum. I do believe there's a section on the different stages of cirrohsis. It's been a while since I read it.

Take care........thoughts and prayers.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


buderflyz
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 2/26/2010 12:02 PM (GMT -7)   
Hi. I saw the information. I think what you are talking about is the "Stages of Liver Disease" in the resource section. I think that is different from stages of cirrhosis. Thanks for the input though!
E

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/26/2010 12:58 PM (GMT -7)   

Buderflyz, cirrhosis is irreversible scarring of the liver.  However, the process can be slowed down and sometimes halted.  To this end, you should not drink alcohol at all; eliminate beef from your diet and increase fresh fruits and veggies; drink filtered water and green tea; get enough rest and sleep and decrease stress in your life as much as possible.  Basically, be very aware of what you put into your body and avoid toxins as much as possible. 

Dr. Melissa Palmer, in her book Hepatitis & Liver Disease, states that a person with cirrhosis is at increased risk for liver cancer and other cancers, ascites and edema, encephalopathy, varices, portal hypertension, and gastropathy.  It stands to reason that the greater the scarring, the more risk there is for the above.

I see a hepatologist who oversees my care.  She has never mentoned a MELD score (probably because I'm not a transplant candidate), but I was able to calculate it on my own through this link:

http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older

Glad you like my siggy!  I feel it really describes me perfectly.

Hang in there and take good care of yourself.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/26/2010 5:07 PM (GMT -7)   
Buderflyz, I wouldn't feel comfortable posting another forums site in here. Email me at dgoodman@nantucket.net and I'll send you the web address for people taking cellcept. It's just like here, but it's all about patients experiences with cellcept. **David**

amyuk
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 2/27/2010 1:15 AM (GMT -7)   
Buderflyz - I am in contact (via another forum) with many people with AIH - and a proportion had cirrhosis on diagnosis. A very small number have gone on to need transplants but the majority have found that once they find the right meds to control the inflammation the cirrhosis doesn't get any worse. Careful monitoring ensures that any complications are picked up early and dealt with. So there is every reason to be positive!

Amy

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 3/1/2010 11:21 AM (GMT -7)   
Buderflyz,
 
Welcome!  It's great that you are already seeing a hepatologist.  The way you should see your medication is that the benefit far outweighs the risks they have.  Immunosuppressants generally increase risk for certain cancers after very long term use...but they are only increased risks not guarantees that you'll develop them.  On the flip side, the mortality rate with untreated AIH (especially severe as yours is with already having cirrhosis) is 5 years.  Treated AIH generally has the same life span as the average Joe/Jane.  Your docs are probably not concerned with your cirrhosis because there is still probably a lot of healthy liver left.  So getting your AIH under control will keep what is still viable, viable.  The liver is the only regenerating organ so what is still good can be all you need and what is only inflamed and not cirrhotic, can heal.  You want to keep your own liver for as long as possible and not worry about another until absolutely necessary.  A transplant doesn't mean you won't have AIH anymore as it isn't your liver that is ill, it's your immune system that is confused.
 
There's a girl, whose mom I've chatted with, she was diagnosed when she was 10.  She hardly had any viable cells left and the docs wanted to transplant her right away.  Mom said no as she wanted her to keep her own liver as long as possible.  6 years later, her liver is regenerating from the few cells that were there and she's a perfectly normal (takes quite a few meds though) teenager.
 
I, too, have AIH.  When initially diagnosed I was on high pred and CellCept.  Since I need to be on immunosuppressnats indefinitely (severe onset so trying not to risk a flare as those are harder to get into remission), I was switched to Imuran as it has long term data and CellCept is a newer drug.  I didn't have any porblems on the CellCept at the time.  I am fine on the Imuran so for now it's what I take.  Currently, I am only on Imuran (100mg).  Last year I started having some cholestasis from it but refused to decrease dose for fear of a flare so now I take Urso as well and all my numbers are normal. 
 
Your fatigue can totally be because of your AIH.  It is a side effect of the disease as is joint pain.
 
Make sure you don't start your pred wean until your numbers are normal.  They should wean you quickly at first (I dropped 10 mgs every month).  When I got to 7.5mg I stayed there for a few months then went to 5mg.  I stayed on 5 mg for 11 months.  The wean off the 5 mg is the slowest as your adrenal glands need to time start working again.  That wean was 2 months.  I was diagnosed in Jan 2007.  My pred stopped Dec 2008 and so far so good.
 
Good luck and keep us posted on how you are feeling!
 
 
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


buderflyz
New Member


Date Joined Feb 2010
Total Posts : 5
   Posted 3/1/2010 2:05 PM (GMT -7)   
Thank you Dany for your encouragement!

Smiles,
Elizabeth

Laura K
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/15/2010 7:39 PM (GMT -7)   
Elizabeth, coincidently I was diagnosed same time as you. My scarring is 3/4.

I am not responding well to prednisone (15 mg) in combo with 6MP (150 mg). 6MP dosage was recently upped from 100 to 150 mg and gave me the dry heaves. Now my hep wants to put me on a transplant drug since I am not tolerating the higher dose of 6MP and my lab tests are not looking good.

Other liver specialists I talked to thought this was a viable option since the goal is to stop you from rejecting your liver even if it is your own! It is very scary to start talking about transplant drugs... it seems one step closer to an actual transplant.

Laura K
DX AIH 4/2009

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/15/2010 8:22 PM (GMT -7)   

Laura, welcome to the forum.  Unfortunately, you posted on an old thread.  Don't know what's become of Buderflyz--she hasn't posted since March.  It would be best if you would start your own thread and introduce yourself to others.  We do have quite a few members with AIH.  By starting your own thread (just click on New Topic instead of Reply), you will get more answers and won't "fall through the cracks."

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 8/17/2010 1:27 PM (GMT -7)   
Laura,
 
Have you only been on the 15mg of pred?  Or did they start you higher and this is the dose you are currently on?  They are likely wanting to switch you to CellCept.  That's what I started out on.  It's a newer drug and is very quick acting.  Since I'll be medicated for life, they switched me to Imuran (azathioprine) after I reached a level of stability.  Azathioprine and 6-MP are closely related.  6-MP is a metabolite of aza.  There is a test to see if you can tolerate both of those drugs called TPMT.  Not everyone is tested for that when initially put on them but I think they may start doing that.  Don't fear the CellCept of even Tacrolimus if they put you on that.  They are all considered immunosuppressants just like the pred and 6-MP (they are just more commonly used as transplant drugs---anti-rejection drugs).  You need to be immunosuppressed so your immune system stops attacking (rejecting) your liver as it has gotten itself confused which is why you have AIH.  AIH is rare so the treatments are based on treatments that work for transplant patients since the goal is the same...convince the body to keep the organ it thinks shouldn't be there!
 
It is nowhere near "one step closer to an actual transplant"...au contraire...it is putting/keeping you in remission to avoid any further damage to your liver thereby avoiding a transplant.  Most AIH'ers will never need a transplant if they remain in remission.  The liver has the amazing ability to regenerate.  SO even with lots of damage, it'll still work fine.  As long as you don't become cirrhotic (even at that, as long as a good portion is still healthy, you'd still be fine provided you stopped further damage by being on the meds).  Follow your doc's advice.  They are there to help.  If you do disagree with something they want to treat you with, you have every right to seek a second opinion.  Are you on a proton pump inhibitor to help protect your stomach from the pred?  If not, speak to your doc.  I was on Prevacid (now OTC so you wouldn't need a prescription) but definitely speak to your doc 1st.  Do you take supplemental calcium with Vit D and a multi vitamin?  These are things your hepatologist should have discussed with you.
 
What are your LFT's at?  You said your labs aren't looking good.  OH, BTW, I was diagnosed with AIH in Jan 2007.  I've been off pred since Dec 2008.  My meds are in my signature...
 
Take care and write back!
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 
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