Just spoke with Hep Dr. and very frustrated!!!

[Guest guest]

Hi everyone,

Sorry in advance if this is too long, but I really need to vent, and

some suggestions on what to do. I first started having problems with my

liver in 2008 after gallbladder removel. I started Urso in August, had a

biopsy in January of 2009 , found out I have PBC/AIH overlap syndrome

and started prednisone. I was seeing a GI then, requested to be referred

to a hep, but Dr. stated he was discussing my case with a fellow

hepatologist in his office, so we were okay for now. He started me on 40

mg, and dropped every 2 weeks 10 mg and then would do labs when I was

down to 2o, off course I kept flaring, I didn't know then, but do now,

that we were dropping to quickly. We add 6 mp in May, started at 50 then

went to 100, but the 6mp test was too high so we went back down to 75

mg. Well being on prednisone was awful, I had every side effect there

is, we finally gave up on it inNovember, labs were not returning to

normal, even at high dose, I think we went up and down too many times,

and it just quick working, but what do I know. Anyway, I have been on

9mg of entocort since then, and have all the side effect, horrible

disfigureing swelling, my skin looks like an orange if any pressure is

applied, so if I sit,or move. I can't show any skin, or I look like a

freak, I am 39 years old, was a thin, attratctive,(according to hubby)

active mom. Now I wasn't perfect, I also have hereditary pancreatitis,

so I have always been sick. But now I am not even me, I sleep 14 to 18

hours a day, my bones hurt, and my migraines are completly out of

control. I called my hep last Friday, which he told me to call at the

end of April to discuss dropping the steroid. I finally heard from him

today, after calling everyday for a week.

I tried to explain to him that I have NO

QUALITY of life, and am absolutely miserable. And he did not care, just

said " at least your liver is better " okay great, my liver is better for

the few hours a day I am awake on the rare days I can even move without

hurting, and I definately cant put on my suit and go out with my 6 year

old to the pool without scaring everyone. I know that alot of this may

seem vain, but it is having a horrible effect on my self-esteem. And he

said we don't need to treat any of the secondary problems from the meds

because they are not permanent, they'll go away in the next year or two

when or if I can quick taking the medication. Okay, I have read every

book on these diseases, and they all recommend giving lasix or aldactone

if edema is bad, and trying provigil or something for the exhaustion.

But nope, he won't even discuss it. Well at this point I would rather

quit taking the meds and have a normal life for the time that I can,

than live like this, it is not living! Even my husband agrees that this

is not living, and doesn't understand why he refuses to help me.

So if anyone can help me, or give me some ideas on what to do. I am so

frustrated and sad. I am tired of missing my life. I am already

disabled, and have been for 2 1/2 years, but at least before I had good

days, sometimes good weeks, but now I am just wasting space and air.

Frustrated and Sad in Nebraska,

Jackie