Autoimmune Hepatitis and Depression

[Mary C]

I am a 43 year old female diagnosed in summer 2003 with AIH following a liver biopsy and other standard blood tests. I also have a history (both personal and family) of depression and have suffered several episodes of major depression.  I was initially treated with imuran and prednisone, but had severe side effects from both, including suicidal mood swings from the prednisone, for which I was hospitalized for approx. 8 weeks.  I was switched to 50 mg Puri-Nethol, and for over a year I take 375 mg Effexor daily and 45 mg Remeron daily for the depression.  My liver values became elevated again about 6 months ago and my Puri-Nethol was raised to up to 200 mg daily, which made me nauseous.  A second opinion limited the dosage to 100 mg, and the values have since stabilized.  However, I am in the midst of another major episode of depression.  Doctors hesitate to increase or augment the anti-depressant medication, as the effexor is already at maximum dosage. I too worry about liver toxicity of the anti-depressants, but I desperately need something to treat my depression.  I am constantly fatigued, which adds to the depression.  My younger brother died in 1991 at age 25 shortly after diagnosis of hepatitis -- I am estranged from my family so don't know the type. Any recommendations as to possible medications that could help or specialists who could recommend a better course of treatment? How often should my blood work be analyzed? At this point I don't know which is worse, the hepatitis or depression.  Any advice you could give would be most welcome.

Kind regards, Mary C.

[DRAGON SLAYER]

Hey Mary,

I'm sorry about your stuggles with so many diseases. I too, am diagnosed with MDD. I was on Ambien, Xanax XR & Lexapro. In addition, while being treated for a spinal injury at a hospital I was diagnosed with HCV. I underwent Tx for 26 weeks & cleared the virus however, I still have occasional bouts with depression.
You're right.....it's very difficult to differentiate what's worse MDD or HCV. MDD drains us & our families no less than HCV does, but we must go on.....no other alternatives.
All I can say to make your struggle bearable is that there is hope. New drugs are constantly pouring out onto the market & each advancement gives us renewed belief.
I'm now taking only Lexapro at a daily dose of 20 mg. I have beaten HCV, recovering well from my spinal cord trauma & I intend to beat MDD as well. I have a great family for support so I'm lucky in that respect. Pls don't despair for a proper mental attitude is a battle half won.

Good luck all,
Ben

[Maari]

Hello Mary

You have asked a lot of questions.  I was dx with AIH june 04, I have not experienced depression.  I would recommend that you check out AutoImmuneHepatitis.co.uk this is an all AIH site and forum.

There are only a few AIH people here.  I really feel for you and I hope you can find the right doctor.  Who is treating you now?
A family doctor? A gastroenterologist? A liver specialist?

I will keep you in my prayers.  

Maari

[Amerabrit]

Hi Mary. You are dealing with more than one person should ever have to tackle and my heart goes out to you.  I'm sorry I have no personal experience to draw from when it comes to giving you tx advice but I can advise you to do your very best when it comes to researching health care providers.  Perhaps you could run some google searches on dr's names and try to get patient feedback on the care provided.  You're already off to a good start by joining this forum; very, very best of luck to you:).

[Mary C]

Dear all,

Thank you all for your kind thoughts and comments. I don't remember now how much prednisone I was on -- I believe it was the standard starting dose for treatment of AIH.  What annoyed me the most was that I had told my heptalogist here of my history of depression, and he did not warn me that prednisone has well-known side effects of mood swings.  I am from NY but live in Switzerland for work, and I feel I have to literally fight to get someone to treat me responsibly. I refuse to see the heptalogist here anymore -- instead I see a heptalogist in NY when I travel there, and remain in communication with him.  I also see my GP here and in NY (when possible), and have, in the past eight weeks, seen countless psychiatrists, whose only help has been the addition of Xanax, which manages to help me control my crying spells.  For some reason, I seem to be very sensitive to small changes in medication, and react with almost every known side effect.  Moreover, my suppressed immune system leaves me susceptible to every infection that goes around -- I am currently fighting my fourth bout of pneumonia in the past 18 months (so add the standard anti-biotics to the mix).

I am trying to continue the fight:  work helps me get my mind off my troubles, and I've signed up for a Pilates course.  (Of course, I've gained weight with all the meds and feel disgusting...)  The isolation and loneliness is the worst, but I am touched by the responses I've received here, which help more than you all can know.  Thanks again, good luck to you all, and kind regards,
Mary

[scruffy]

Hey Mary, since you have found this site and enjoyed stopping by you are now qualified to come back regularly even without any questions to ask. We all need friends here and there is always room for one more. Keep com'in back! frank

[Tallblonde]

Wow, I'm really sorry to read that you've developed this AIH complication.  How concerned is your doctor over this issue?  It's a real Catch-22 because, as you know, the predisone can exacerbate the HCV and the Interferon can exacerbate the AIH.  Man, this stinks.  

Susan

[Tallblonde]

Well it doesn't sound as bad as I thought.  I know you like and trust your doctor and he obviously would let you know if this complication was going to be a major stumbling block.  We're all dealing with some degree of auto-immunity with this disease, so I guess this is just par for the course.  You do have a lot to be grateful for (and I know you are grateful) with the improvement in your fibrosis score.  

I hope the break from treatment will allow you to really enjoy most of the summer without the monkey on your back. You can re-charge your batteries and come back with renewed engery and determination to fight the final round.

Take care,
Susan

[Tallblonde]

Hey Scott,

I forgot to mention...I finally called Dr. Cecil's office yesterday to schedule an appointment (I had been waiting for my PCP to make the formal referral).  

You know how there's usually a 3-4 month wait to see most GI's as a new patient?  Well, I was shocked when the nurse said there were openings two weeks from now.  I guess there aren't a lot of folks in Louisville with HCV, or else there's an abundance of hepatologists in the area.  Either way, I'm just glad that I'll finally get to meet him (good riddance, Dr. Doofus).

My appointment is May 5 (I wasn't available for the earlier slots).  I'll let you know how it goes.

Susan

[annainitaly]

scott I was hoping the diagnosis of AIH wouldn't have been confirmed: hcv is more than enough! so sorry you have joined the autoimmune club.

[Califia]

Wish we could just sacrifice a goat facsimile or something to convince the furies to drop their hold on you.   Damn!    Any chance of this resolving on its own?

[annainitaly]

have I already told you my AUNT has just been diagnosed an autoimmune cholangitis (same stuff the docs thought I had)? now, SHE is on prednisone & azathioprine. hell, welcome to the club, everybody, arms wide open to you... but I won't insist in case you don't like the menu and choose to quit.  

cali, I find it a GREAT idea...  already looking around for scapegoats: a unique opportunity to get back in touch with a few people of my past! do you think that could work???  ooops, just kidding.   :-)))

[Califia]

I owe you one, kid.  My explanation is in the mail, I swear!

[annainitaly]

scott sorry I could not connect for a few days! tonight I attracted a pc expert friend of mine here with a dinner offer, and it worked, hahaha!
I read your post just now. hope you get my reply, PLEASE just leave a line if you happen to read this.

well you already know that I HATED prednisone and azatioprine/imuran. but I have been on way a higher dosage than yours is going to be. I had some moonface and gained weight (prednisone both slows your metabolism down and triggers your appetite like hell). azioprine is used combined with pred to keep the prednisone dosage low. it is a pretty dangerous med though - risk of acute pancreatitis and of carcinoma too. more often, risk of low red blood cells. luckily I had NONE of those problems. it is recommended to check your blood values very often at the beginning, even once a week (I did it once every two weeks, then slowed down). pred made me feel dizzy and confused and gave me ear ringing that is still there now that I'm 5 months off. I never missed a day on work, even if it has been hard. doc says the ear ringing (tinnitus) should have a different origin  but I am sure I had none before taking the meds. I’ll go check my inner ear in a short time, although I know there is practically nothing that one can do about it. but let me insist, 5 mg pred are a very different dosage from mine and it may well bother you less or nothing at all. I had 36 mg prednisone and 100 mg azioprine daily.
which exactly are those plasma cells you are mentioning? ANA ?

you ask if I am in rome… for the pope, you mean? no. I never liked this pope when alive and even less I like the circus that’s happening around him now that he’s dead. I live in verona (shakespeare, romeo &  juliet… etc.). well firenze is fine, but nothing in comparison with verona, you see…   ;-)      but you, who like belcanto, SHOULD come and experience the opera in the arena.  just tell me in case you drop somewhere around italy sooner or later.
a.