Re: from W

[Guest guest]

,

My doctors were really very concerned about placing me on prednisone with a

history of pancreatitis. At the time I was diagnosed with autoimmune

hepatitis(AIH) (Jan 03), I had not been diagnosed with chronic panc - my GI at

that time was calling it recurrent acute panc, but other doctors were already

insistent that it was cp. The thing is that the five year survival rate for

people with AIH without treatment is only 30% and the ten year survival rate

without treatment is only 10% - not real good odds for someone just 42 years

young! They put me on a lower starting dose of prednisone than they would have

if not for the pancreatitis. I started at 20 mg a day and most start at around

30-60 mg daily. 20 mg of prednisone daily had bad enough side effects after a

few months, so I can't imagine having to deal with higher doses. The other

medication used for AIH in combination with the prednisone is Imuran. It is an

immunosuppressant and often used to treat cancer. While Imuran is actually

safer than prednisone long term, it is also known to cause pancreatitis. We

stopped both the imuran and prednisone in July 2004, so I was on them for about

18 months. So far, my liver enzymes have remained normal or near normal since

stopping the meds. I'm still kind of holding my breath because the chance for

relapse in the first six months is about 50% and the chance for relapse within

the first year is about 70%. If the AIH relapses, you typically are put on

Imuran for life. I had no problems tolerating the Imuran and I don't think the

Imuran or Prednisone had anything to do with the flares of pancreatitis I had

while on it, but I guess there's really no way to know for sure. Long term

Imuran has a slight risk of causing cancer, particularly lymphoma. However, if

the AIH relapses, I will take whatever med it takes to keep it under control

because if you can't stop the AIH from progressing, either a liver transplant or

death in less than 10 years is pretty much a given.

I am definitely a 'different sort of bird' when it comes to my medical issues.

My GI/hepatologist says I am his 'most unusual and complex' patient. That's not

really a title I wanted to earn! Thankfully, I really do believe I have very

good doctors, FINALLY. I especially love my pcp - internal med doc and my pain

mgmt doc and his physician's assistant. They take good care of me and are so

kind and understanding.

Well, I'm off to my mother's for our second Thanksgiving dinner.

W

[Guest guest]

,

No problem. I have an appt with my GI/hepatologist on Monday. I'm sure

he'll recheck my liver enzymes and we'll go from there. The first choice if

they are up will be to put me back on Imuran, which I tolerated with no

problem. I pray that I never have to go back on prednisone long term, but

if I do, I'll deal with it.

Yes, I finally did go to sleep. Had a good but busy day yesterday. The

scuba shop we like the best in the area had their annual Christmas party.

they had food, drinks, and drawings for lots of prizes. They had 50 gifts

that names were drawn for a variety of the Dirty Santa game. At the end,

the grand prize drawing was for a BC (bouyancy compensater - scuba diver's

inflatable life vest), regulator (what you breathe through, and gauges

(measures how much are you have left in your tank, how deep you are in the

water, temperature of the water, etc.). Only a scuba diver would know the

value, but it was probably around $1000. They probably gave away about

$4000 in scuba equipment and acessories, along with few gag gifts that were

part of the dirty santa game. Bud's name got drawn for the dirty santa

game, but in the end he ended up with just a small scuba accessory (octopus

holder). Still, it was a lot of fun and made me remember how exciting scuba

diving is and more determined than ever to do all I can to continue getting

better (in regard to my health) so I can return to at least some low stress,

easy scuba diving. Of course, before I can go to Mexico, I have to somehow

get my stupid body to develop antibodies to Hepatitis A and B. I've had the

shots already but the blood test showed I didnt' develop any antibodies to

either Hep A or B, so I've got to get the shots again and I hope I develop

antibodies. I've never known a scuba diver that got Hep A or B from going

to Mexico but it is more prevalent there, even in the very developed areas.

Because I already have liver disease, as well as all my other health issues,

including an IgG deficiency, getting Hep A or B could be very dangerous for

me. So - my doctors say that I absolutely cannot go outside the country

until the Hep A and B vaccines work in my stupid body! I'm going to get the

Hep A and the first Hep B vaccine next week. I think the Hep B is a series

of 3 vaccines. Luckily, they don't seem to cause any side effects, such as

a sore arm or fever.

So - wish me luck as I would really like to be able to at least consider a

trip to Mexico sometime next year.

Oh, I forgot to say that after the scuba Christmas party, we met a friend

and her son, and got my 8 year old nephew, , and went to the movies

to see " The Incredibles " . Really cute movie. Then we brought home

to spend the night with us. He and I watched Spiderman and then cartoons

til 2 a.m. The little shit was awake before 8 this morning! Oh, to be

young and have energy. He's really good though. We didn't even know he was

awake until the dog insisted on going out and then we heard the TV on in the

den - turned down low so as not to disturb us!

Hope this finds everyone doing well.

W