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

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)

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, 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.    (Been there, done that.)

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

Hugs,

Connie

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

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.........

Finnster's mom, you could ask for a consult with a nutritionist. 

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, just try to eliminate (or greatly reduce) the red meat and up the fresh fruits and veggies.  ;)

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

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