Autoimmune Hepatitis-Self Introduction-New to forum

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*Tashies*
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/13/2010 8:29 PM (GMT -7)   
Hello, Everyone. I am 25yr old Female living in Oregon. I was recently diagnosed with Autoimmune Hepatitis and am terrified. I have been on 60mg of Prednisone for 2 weeks and have horrible side effects. My inital liver enzyme levels were at 1300, and they are now at roughly 400, so the Prednisone is helping, but the outlook is another 4 months of treatment. How does everyone else cope with these horrible side effects? Severe anxiety, abnormal heartbeat, mental confusion, depression, nausea, jitters and restlessness...This is just my basic question post...trust me I will have more! *trying to be positive*

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/13/2010 9:19 PM (GMT -7)   

Tashies, I am sorry you have been diagnosed with AIH and at such a young age!  We do have a number of members here with AIH, though, whom I'm sure will be of great support to you and offer much information.  I know Prednisone is a nasty drug, but in time you will be weaned down and off of it, hopefully.  I'm sure those who know more than I do about AIH will post soon.

Hang in there!

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 3/13/2010 9:20 PM (GMT -7)   
Are you seeing a hepatologist or a gastro? Perhaps they might substitute an anti rejection med, such as prograf or cellcept. That's a stiff dose of prednisone. **David**

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/13/2010 9:32 PM (GMT -7)   
Hi Tashies,

Welcome! I'm so glad you found this forum! Although I'm sorry for the circumstances that bring you here.

I was diagnosed with AIH (autoimmune hepatitis) almost 2 years ago. The side effects of prednisone are brutal, and unfortunately I never found any way to really ameliorate them, I just had to sort of ride them out, and be grateful for every drop in the dose as I tapered down. You haven't started tapering yet, apparently. Wow, 60mg is a high dose!

I started on 100mg of Imuran plus 40mg of prednisone; my doctor left the Imuran dose at 100 and has been tapering my prednisone VERY slowly ever since. But I'm complicated, because I have a number of other autoimmune diseases like lupus and celiac disease and such, so as the pred is tapered down, my lupus and RA tend to flare up. So then I have to have my prednisone dose increased again. I was down to 5 mg but am now back up to 10mg. sad

The highest my liver enzymes have ever been is over 3500, so 1300 isn't that bad. I understand being scared though! That's normal when you've just been told you have a nasty autoimmune disease like AIH...especially for someone so young! I'm so sorry you're going through this!

You don't have to worry about staying positive with us, honey! If you need to vent, please vent away! :)

I'm puzzled when you say that you're only going to have another 4 months of treatment, though? Does the doctor expect the AIH to go into remission or something? Because my understanding was that I would have to deal with this for life, although it might go into remission for periods of time, those periods wouldn't be predictable.

Well, anyway, I do hope that you have to be on the prednisone for only a short period of time, for your sake!
Best wishes and ((((hugs))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/14/2010 9:54 AM (GMT -7)   
Hello Tashies, just wanted to welcome you to HealingWell. I know you must be terrified but take that terror and turn it into fight. You getting educated on the disease is the best first step you can take........congrats on taking that step. Some people can't do it. In order to conquer your enemy you have to know everything about it.
We have numerous members with AIH who are traveling that same road and who are very knowledgeable about the disease. You are not alone. So stick around and continue to learn as much as you can so that you can make educated decisions about your treatment.

Lot's of 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.


ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 3/14/2010 2:26 PM (GMT -7)   
Dear Tashies, I was diagnosed with AIH in june 2007. My MELD  fluctuated between 15 and 20 for about a year. My hepatologist prescribed cellcept, high dose prednisone, lasix, aldactone , and lactulose. I was called in May of 2008 for a transplant, but the liver was not viable. After that, my health gradually improved. I did everything the Drs. said. Low sodium, protein diet, took my meds religiously. Lost about 50 lbs (without trying).    smile Today may Meld score is 6! I take 5 mg. prednisone, and 1500 mg. cellcept per day. I gained back 40 lbs. and look and feel so much better. Definitely not 100%, I am still tired and have muscle and joint pain. My DR. said I am in remission, and I am grateful. I have spent 2 years learning and reading everything i can about AIH, cirrhosis, ect. And will be glad to share my experiences with you.  Take Care, one day at a time.  Ailsa

Post Edited By Moderator (hep93) : 3/14/2010 5:20:44 PM (GMT-6)


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 3/16/2010 2:17 PM (GMT -7)   

*Tashies*,

I was diagnosed January 2007.  Try not to freak out although overreacting on high dose pred is totally normal!  Try to remain positive, your body will respond better.  The nasty side effects of pred decrease as the dose goes down.  I even developed facial hair (I am female) and a hump on my back, along with the hyperactivity, insomnia, moon face, crazy leg swelling, etc... 

I am also concerned that your doc said you were only going to be on treatment for 4 more months.  This isn't going away.  It's an autoimmune disorder.  Your drugs will change and you'll likely go into remission but the disease won't go anywhere.  Your next step will likely be a drop to 40mg (very soon, I imagine) and to add an immunosuppressant.  They are called "steroid-sparing" drugs as they allow you to wean faster from the pred...btu you still can't get off it that fast.  All my bad side effects were gone when I reached the 10mg dose.  The insomnia got better when I got to 20mg.  I had started at 40mg and a week later they added an immunosuppressant.  Mine was CellCept at first but since I'm to remain on one indefinitely, they switched me to imuran (azathioprine) when I was on 7.5mg pred and 1000mg CellCept.  I piggy-backed the 2 for a couple of months as Imuran takes 2 months to take effect.  Then I dropped the CellCept.  When I got down to 5mg of pred I stayed on that for 11 months.  The last 2 months I was on pred, I started my wean by bumping up my Imuran to 100mg and then the wean off pred from 5mg to 0 took 2 months.  You need to make sure that's the slowest wean.  I am currently only on 100mg Imuran.

I know a couple of people from another group who started at 80mg.  The docs do what they need to to stop the inflammation (only pred will do it) from getting worse and causing cirrhosis.

As per what you can do...not much really.  Be happy you are alive!  The doc can prescribe Lasix for the edema (cankles and huge knees you may have by the end of the day) and sleep meds to help you get some sleep.  I couldn't handle 3 nights in a row without sleep so first they tried Lunesta but I didn't like it, Ambien next but it gave me tremor in the morning and finally, every 3rd night, I would take a xanax.  You have to be careful with xanax as it is addictive but at least you get some sleep sometimes.  So speak to your doc. 

Are you seeing a hepatologist?  That is super important.  GI docs have experience with AIH but a liver specialist (hepatologist) has more.  If you aren't seeing one, ask for a referral!  You should ask about an immunosuppressant and about dealing with your side effects.  They will get better though.  The liver is an amazing organ.  You are your own advocate so it's a good thing you found a group to ask questions to.  You can tell your doc what you are expecting from your treatment.

Without treatment, severe AIH patients die within 5 yrs of diagnosis.  This is why you are medicated, don't forget that.  With medication, we can have the same life expectancy of the average human.  Take ailsa and there are others, they were diagnosed with AIH that had progressed to cirrhosis and are now doing much better and in remission with no transplant needed.  Once the inflammation is under control, whatever is there that is still healthy will regenerate.

Sorry for the long-winded message...I get that way sometimesturn .  I'm glad you posted.  Keep us up dated with how you are doing.


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 

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