Update...again, sorry : )

[Guest guest]

Hi everyone,

Well after trying to explain to my current hep that the risk of prograf just

didn't seem to weigh with the benefit, and after having such horrible side

effects on entocort, my husband really really doesn't want me to take it without

a second opinion. And after speaking to my PCP and pharmacist we have decided

that a second opinion is needed, and since the only heps here are at the same

teaching hospital as my current dr. I am going to Mayo clinic in Rochester Minn.

to see Dr. Lindor, god willing and we are able to arrange the finances to stay

for 7 days and pay my portion of the bill, my appointment is July 6th and I am

very excited to be able to see someone of Dr. Lindor's experience, yet stressful

with all of the details.

Again thanks to all of you for you support and information.

Jackie

>

> Hi everyone,

>

> I thought I would give a quick update, since everyone was so great in there

replies. It is so wonderful to have contact with other people who are fighting

this disease!!

>

> I went on Friday to visit my hep Dr. and discovered that my labs were all

elevated, again, for some reason steroids (prednisone or entocort) just quit

working for me. I am going crazy with side effects to find out the medication is

no longer working Uggg. I had normal labs in Jan and Feb. so we didn't check

them until last week. He said they were 20 to 50 x's normal, I didn't think they

were that bad, still below 500, but it has now been 2 years since starting

treatment and I have had only a few weeks here and there with normal LFT's. But

at least I get to wean off of the entocort and stop the 6mp, so hopefully the

side effects go away. I actually dropped down to 2 entocort tablets a day last

friday, and I have a lot more energy, so hopefully the other side effects will

go away with time.

>

> So my hep's new plan of action is for me to take 2 mg of Prograf a day. And no

I have not had a transplant, but I guess this is our " hail mary " last choice. I

am not sure what we do next, he had no future plan. So I will keep my fingers

crossed. Oh and on a side note my husband does not want me to take prograf, he

doesn't think the risk is worth it, since there is very little data supporting

using it in PBC/AIH.

>

> Thankyou again for listening and all your support,

> Jackie in Nebraska

>