New to the site - have PBC & Hepatitis - need advice

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FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/30/2009 12:12 PM (GMT -7)   
Hi everyone - I'm new to this site, just stumbled upon it searching for information online. I've been recently diagnosed with Primary Billiary Cirrhosis and auto immune related hepatitis. My Cirrhosis was originally misdiagnosed as Cholestasis of Pregnancy while I was pregnant. Soon after delivery (the pregnancy was a miracle in itself) the itching returned and after treatment by my local doctor I was sent to the Mayo Clinic, who is currently overseeing my treatment.
 
I am currently taking Urso Forte (1000mg/day), Hydroxyzine HCL tablets (40mg/day) for the itching, and Prednisone (40mg/day) to treat the hepatitis. I'm getting blood tests done every 2 weeks and have to go back to Mayo in a couple of weeks for an Upper Endoscopy.
 
I'm getting scared because I don't see any improvement and have been on the Urso for 4 months now. The Hydroxyzine doesn't seem to help the itching too much - may take the edge off a bit - and the Prednisone is making me break out like a 16 year old!
 
I am the mother to one beautiful 16 month old boy, and would love to have a 2nd child, but that's looking risky right now.
 
I have no idea what my prognosis is yet and don't have much of a support system. I don't talk about it too much with my husband because he is so worried I don't want to worry him any more. None of my friends have health problems and I don't know anyone with liver disease.
 
Any words of advice anyone could give would be appreciated. I'm worried about the future and have no idea what to expect. Anyone else have PBC?
 
 

Post Edited (FinnstersMom) : 3/30/2009 1:22:22 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/30/2009 3:29 PM (GMT -7)   

Finnster's mom, welcome to the forum!  I know we have members dealing with autoimmune hepatitis, but I don't recall anyone with PBC. 

Which Mayo location are you going to?  I'm being seen and treated by Mayo Jax.  They literally saved my life after I was diagnosed with liver cancer (nearly 2 yrs. cancer free now.)  I know you can totally trust them.  Is there any indication of how long you will be on the Prednisone?



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

Post Edited (hep93) : 3/30/2009 6:08:02 PM (GMT-6)


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 3/30/2009 7:18 PM (GMT -7)   

Dear  "mom"

I have autoimmune hepatitis, too.  I have had treatment for two years so far.  Thinks move slowly, the liver has to heal, so be patient.  Ask us any "little" question, even if it's "gross", because we all have the same kinds of problems.  (See the Chron's disease site for some grossouts--I post there, too....)

The only advise I have is to take good care of yourself in the simple things--sleep, good food, lessened stress, exercise--these things are very important in healing.  And do what the doctor says without alot of "second guessing".  You will not find much with your research, and medicine is more art than science, so try to follow the routine.

 

Keep posting and asking questions.  I hope you do well...

 

Pix


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/31/2009 6:33 AM (GMT -7)   
Thanks pix & hep93. I appreciate the response. Both of my conditions are auto-immune related, which I'm beginning to believe is the hot-new medical term for "we have no idea why you have this but we'll try and treat it". I have some other weird female "issues" that should have made a pregnancy impossible, but got pregnant the 2nd time we tried! Thank God I did because I could have gone undiagnosed with both the PBC & Hep for years making this situation a bit more difficult to treat.

Hep93 - I am also being treated at Mayo in Jacksonville. We live about 3 hours South of there. Congratulations on being cancer free! I haven't really 'bonded' with my doc at Mayo yet - I've only been under their care a couple of months now. He's young and foreign but seems on top of things and nice. His resume is impressive. I have a list of questions for him next time I'm up there.

Right now I'm preoccupied with the itching and the terrible cystic acne I've developed as a result of the Prednisone. I've read that walking/exercise can help with the overall disease, not sure how but I should probably take that up. Having a full time career, a full time baby and a full time husband leaves little time for exercise lately!

Thanks guys!

Post Edited (FinnstersMom) : 3/31/2009 7:36:02 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/31/2009 9:34 AM (GMT -7)   

Finnstersmom, I'm glad that you live close enough to access treatment at Mayo.  I am about 4 miles from the clinic/hospital.  I expect to move to the beach by the end of summer/beginning of autumn, so that will put me even closer.  I would move to the Gulf Coast, but stay here because of Mayo.  They also did a 2nd revision of my left hip replacement...such a great job that it's almost like having my real hip.  I had bilateral replacements and one revision at Shands and they made a mess of all of it.

I'll be at Mayo all day tomorrow for testing (I'm sure you've probably been through that.)  On Thurs., I return to see my hepatologist, Dr. Denise Harnois.  She is absolutely tops.  All their doctors are, though.  I've loved my surgeons, P.A.s, everyone there.  I've been going for about 3 1/2 years, and have even stayed in the new hospital (for my last incisional hernia repair), which is an amazing place.

If you think that autoimmune disease is a catch-all phrase like fibromyalgia...that's incorrect.  It is a very real disease and needs to be followed closely.  It appears to me that you are getting plenty of exercise just taking care of your baby, husband, and career.  smilewinkgrin   (Been there, done that.)

Please take care of yourself and I hope you will post often!

Hugs,

Connie


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


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/1/2009 6:16 AM (GMT -7)   
Pix - I just re-read your post. Should I expect some "gross" stuff to come along with this already oh-so-fun disease? I haven't had anything gross yet, but as I said, this acne is doing a number on my self-esteem. Living in Florida makes avoiding a bathing suit hard, but I'm not feeling like I'd like to show my upper back right!

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/1/2009 11:31 AM (GMT -7)   

Dear "Mom"

No, not really, nothing gross.  I guess what I meant was that there was no question that you couldn't ask.  I was on prednisone 40 mgm each day for about a year, and I got acne, too.  Plus just about every other side effect, too.  Taking it is no fun, is it....

 

 

Pix


pjay
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/3/2009 11:53 PM (GMT -7)   
Hi All,
 
I am new to this site, I have had autoimmune PBC for 2 yrs, my Specialist is treating me with 1250 mg of Ursofalk daily and my GP put me on a Vegan diet plus fish! and sent me to a Naturopath she prescribed Cod Liver oil tablets, multivitamin and Vit C 1000 mg daily, I certainly feel better , less fatigued and more alert mentally but am sick of tofu and fish.
 
I would be interested to hear if anyone else with PBC has had a Vegan diet prescribed for assistance / support of PBC and if it has helped them.    I am dying for a steak!!!!!
 
Pjay

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/4/2009 4:43 AM (GMT -7)   
Hi Pjay, welcome to HealingWell.

I along with a host of others firmly believe that diet is a big part of the treatment plan for any of the liver diseases. Sounds like your GP is more educated then most about the liver.

We ask new members to please post a new thread so they don't get over-looked accidently. We want you to get the most replies and answers to any questions that you have. Just click on the new topic button and you are good to go.

Again welcome to the best liver disease forum on the net..........we are glad you found us.........

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.


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/5/2009 1:37 PM (GMT -7)   
pjay - thanks for writing. You are the only other person I've heard of with PBC. I've been dealing with this (diagnosed with) since October/November, so we're still finding the right combo of medication, but I've asked 2 different doctors about diet modification and both have kind of blown it off. They give the feeling that as long as I'm on the meds I don't have to change my diet. I feel like I probably should, I'm going to press my Mayo doc more on this the next time I see him. Can you give me an idea of what your prognosis is, or how you discovered your illness?
Thanks!
Finnstersmom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/5/2009 3:42 PM (GMT -7)   
Finnster's mom, you could ask for a consult with a nutritionist.  wink
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/5/2009 5:30 PM (GMT -7)   
good suggestion hep93, I will do that. Plus my sister in law is a nutritionist with her masters - I should probably talk to her ;)

pjay
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/5/2009 7:10 PM (GMT -7)   
Hi Finnestons Mom
 
Its nice to have found someone else with this problem.
 
I was diagnosed by accident I was having a full blood workup for fatigue and my Liver Function Tests came back off the planet.
 
My main symptoms were extreme fatigue, poor stamina, and reduced ability to make decisions, which I desperately needed for my job I am a manager in the health industry field.
 
The change to a vegan diet was difficult ( and not supported by Specialist! Like you he blew it away!!) at first ( lots of Gastric upsets with increased vegetables, lentils, pulses and grains) but the difference it made was significant.The highdoses of Cod Liver oil Tabs and Vit C help support the Immune system and assist with absorption of Vit A D E K.
 
The specialist feels if I maintain the improvement in my LFT's ( with meds) I probably will not need a Liver Transplant!!! That's got to be good!!
 
He feels I will outlive it ( I'm 57)
 
Cheers pjay

FinnstersMom
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 4/6/2009 7:41 AM (GMT -7)   
Thanks for writing back pjay - reading your post was like you were reading my mind! I also have fatigue and poor stamina, I never linked the decision making thing to this but I also have noticed that - but more than that I just can't seem to remember anything anymore. I joke with my husband that I must also have early onset Alzheimers! I'm joking a bit, it's not that bad but my ability to keep things in my mind has gone down hill, it's very frustrating for me mainly because of the affect it has on me at work. I have a #2 position in my department and it doesn't look very professional when I can't recall a conversation I had with someone a few weeks prior - or worse yet, forget about a meeting!

I am 37 now, I was officially diagnosed in October 2008 (when I was 36) but we now know I had it when I was pregnant in 2007. Thinking back now I realize that the "itchy" symptoms arrived about 3-4 years ago (32-33yrs). I blew it off to allergies because the symptoms arrived around the same time we moved into a new house.

I'm definately going to push the diet issue. Going vegan would be difficult in my house, but I surely can cut back and maybe go vegan'ish? :)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/6/2009 12:48 PM (GMT -7)   
Finnstersmom, just try to eliminate (or greatly reduce) the red meat and up the fresh fruits and veggies.  ;)

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


pjay
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/6/2009 2:07 PM (GMT -7)   
Hi FinnstersMom,

I'm not a doctor but I was told there is a direct link with liver toxicity and mental & physical sluggishness so I guess anything we can do to help keep the 2 nasties at bay and makes us feel well and able to function in our everyday life is great and worth the effort. I agree with hep93 start off with the red meat and maybe increase fish.


Go for it!!
Pjay

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/6/2009 6:45 PM (GMT -7)   
Nutrition is a difficult area. On one hand, it seems logical that eating healthy foods lead to having a healthy body. There is a consensus now that fruits, vegetables, grains and plant fats are good, and overly processed foods, lots of animal fats and refined sugars are bad. Exercise is good (but that's another topic!). In illness, the situation is more complicated--in diabetes, for example, refined sugars are particularly bad, and for people with high cholesterol, animal fats shouldn't be eaten as much. Where is the line between general prevention (fewer animal fats lead to lower colon cancer incidence) and actual disease modification?.(If I stop eating animal fats, will I shrink my colon cancer tumors?) For us with liver disease, there is no research on the effect of food on the course of the illness. So when pjay becomes strictly vegan, it sounds "healthy", but is that why her enzymes went down? Just because the enzymes and the diet changed at the same time doesn't mean that the diet changed the enzymes. And if pjay "cheats" and eats meat or dairy, then her enzymes go up, does she then feel guilty? Feeling the false sense of control from diet can drive you crazy sometimes.
Think about it.
Pix

pjay
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/7/2009 4:16 AM (GMT -7)   
Hi Pix,

This question of the ? influence of dietary change on illness is a vexed one to be sure. All I know is that in the earlier stage of my condition when I was on ursofalk with minimal changes to diet my enzymes were comming down but I still felt both mentally and physically sluggish was struggling with managing my everyday life and later when I had been fully vegan for 6 mths my enzymes were still improving and I was feeling sooooo much more alert and well and functioning to near normal.
So who knows I think it is the meds lowering my enzymes but I don't discount the benefits on my life/ illness of the change to a more healthy eating regime.

Cheers
pjay

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/7/2009 11:18 AM (GMT -7)   

Dear Pjay

I agree with you wholeheartedly.  I myself am basically a vegetarian, and I eat properly most of the time.  I am a big exercise fanatic and I am a personal trainer, too.  I know from my own experience that food/exercise make a big difference in how I feel, even if I am struggling with illness symptoms or medication side effects.  The message of my post was that it isn't your fault if you get sicker, no matter what you eat or don't eat.  I have seen my friends really torture themselves with the thought that they "caused" their illness or their problem because they did or ate something that was "wrong".  It sounds to me that you are taking good care of yourself without giving yourself any additional hassles.  You might want to test the vegan diet after you have been stable, and see just what is influencing what.  (Sometimes a steak is good for you, too!!!)

Good luck for the long haul, fellow liver-buddy!

 

Pix


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/7/2009 11:54 AM (GMT -7)   
For myself, I base my diet on how I feel.  I know that when I eat beef, I later have a headache and feel sluggish.  When I eat refined sugar, I bloat.  While my liver enzymes have decreased in the past two years, I attribute that more to the absence of cancer since my treatment and surgery than to diet...but who knows?

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

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