Jean's update/Prograft question

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Hi Friends,

Just an update, I went to my many doctor appts. this week and found

out a few good things and a few not so good.

Firstly, as the ENT determined that my headaches were not due to

anything but the prednisone, then the ultrasound of my pelvis went

well to determine that the mild ascites was gone. They speculate that

they were backwash due to my acute episode and not due to cirrhosis.

That was great news, and a sigh of relief. However, since they had

lowered my pred. to 10mg a few weeks ago, my liver numbers went up

for the first time since starting meds. Dec. 27, they raised it to

12.5 and the numbers doubled in 9 days. So now my hep. said maybe

they might have to keep me on a dose between 15-20 for a year, and

his concern for the headaches and depression brought up the proposal

of prograft. He has used prograft, used usually post-transplant, as a

pre-transplant treatment for AIH. He was concerned that my Crohn's

might not respond, so I consulted with my new Gastro yesterday about

that, and they will decided together a course of action to propose.

While I have repeatedly asked why he doesn't just up my immuran (I'm

at 25 mg only) and the Gastro suggested the same course, my

hepatologist is concerned more about bone loss, I guess because I'm

young he is worried about the long-term affects. My Gastro didn't

seem to agree with that concern...

I am sure some of you are familiar with prograft, at least post-

transplant. I was hoping some could tell me what your experience is

with cost (assuming it's more expensive, my Blue Cross requires you

to pay 20% I think) and side affects. My Hepatologist said some

patients post transplant with U. Colitis have relapse when on the

lower dose of prograft. However, he has a patient with AIH who is on

it and after a year of bed is now doing great and going back to work,

lost all the pred. weight gain and her kidneys are fine.

So now they put me on 20 mg of pred. for 3 days then to 15mg until

March 21 when we will check numbers again and make a decision on the

possible meds change. I am glad that the option is there but I am

concerned if I get off the prednisone and prograft doesn't keep

Crohn's in check that getting back on will mess my system up. Since

I'm new to all of this, I appreciate any input you all could give. I

am still having itching, and my liver pain is increasing again. My

numbers were normal until about 10 days after 10mg they were I think

80 and 60, now after 9 days of 12.5 they were 150 and 110, and though

my alk phosphate was normal, my ggtp was up to 88. He still

attributes this only to the AIH inflammation and not any Biliary

disease... any input is appreciated!

On the sunny side of things, I have found that after being on a lower

dose for a few weeks I have felt markedly less depressed (like hardly

at all) and more like my old self, minus the itching. SO if I have to

be on higher doses of pred. I think it would be easier to deal with,

knowing that any depression is likely linked with the meds more than

any personal defect. I told the doctor if I have a headache and have

to walk around with a box of kleenex I will be willing to live there

for a year if that's what my liver needs. So we'll see....

We have a sunny and warm day ahead in OKC. Though I may only view it

through the window due to exhaustion, it will be a welcome reminder

that spring is coming. I hope you all have a sunny day... at least in

your hearts.

Jean