Re: a big change in labs

[Guest guest]

Hi Debby,

I can certainly relate. My labs have been bad this year starting in

February with an all over lousy feeling. My sed rate is up in the

70's also.

Been back to the rheumy, GI and hep and none of them can figure out

why. Had a repeat biopsy in July and the liver shows no change from

the last one in 2001. So we have no idea what is going on. Hep is

just monitoring labs every 3 months right now. None of my labs are

really bad - the worst being the alk phos at 249 so no change in

treatment. I've been off prednisone since 2002 and off Imuran since

2003 - only treating the PBC with Urso Forte.

The only thing we've found is I developed Autoimmune Inner Ear

Disease in February. I lost the majority of my hearing in about an

hour. Left my house for an appt. for a physical and by the time I

got to the doctor's I really couldn't hear anymore. I did go on

prednisone for 2 weeks and it was determined oral prednisone no

longer works for me. Got a little of my hearing back by 4 steroid

injections.

Other than that, there seems to be no reason for my sed rate to be so

high. Costochondritis has been horrible the last few months along

with major joint pain. My rheumy thinks it's the fibromyalgia

worsening and I've just started taking Lyrica. We'll see how that

goes over the next 3 months. She also mentioned they are starting to

think of fibro as an autoimmune disorder too.

Take care,

Sandy C.

[Guest guest]

Deb - don't panic. Explain to your doc exactly what you said here. I was in

the same boat - worried to death about PREDNISONE and the weight gain as I lost

30 pounds and have had a weight problem all my life and REFUSED to gain it back

no matter WHAT. One person who I dearly love has been on prednisone for YEARS

AND YEARS but it's for RA. She said she refused to be on any dosage more than

10mg. I said what if you need more ? She said " some " is better than " none " and

she never gained a pound from it. Ultimately when it comes down to it I'll do

what it takes to survive but if I have an option or need to challenge for a

different way to help me I will.

I know your weekend will be anxiety riddled - try to have a good one.

Thank God we have each other to help us through these " weekends " and times we

need to vent and share and feel.

[ ] a big change in labs

Well, I am figuring that perhaps I have come out of remission, and need some

wisdom and words of encouragment until I can speak to the GI on Monday.

I saw my doctor in October and the labs we had done for that appointment were

done 9/20. My GI noticed the weight loss and didn't want me to lose much more

than 1 pound a week, but I am still losing about 2 pounds a week. She ordered

labs for 2 months rather than the quarterly she usually did. So, today,I had the

test done and got the results back this evening but I forgot to get them before

the GI's office closed.

When I received the labs (I have permission to obtain the results-at least the

GI thinks I have some brains! LOL) I freaked, which is WHY I should have done

the test on a day other than a Friday. Of course, my GI is NOT on duty all

weekend.

So.....the bad news is that my AST trippled, the ALT trippled, tjhe Albumijn

dropped, the Glob Seru dropped, but the Alkaline p-tase completely doubled. I

know that I have discussed with my GI that should the tests begin to rise, I

would have to go back on the med.

My problem is simple....I refuse to take the prednisone. Now, I have lost a

total of 105 pounds and am not willing at all to be put back on that. I will

return to the 6MP, and probably should have done so now.

One question that I have for anyone...I know that in the beginning, when I was

first dx with AIH, of course, there had been no treatment. Then, once I started

treatment and had a second biopsy, the results indicated that indeed I did

respond to treatment.

So now, I am wondering, is it a probability that I would have a bx before going

back on the meds? Just curious to know if anyone has been on this road before. I

do know that when I saw the GI last, she said I would have a bx within the year.

I think she though and saw that I was going out of remission by the things that

I told her.

Anyway, I am NOT going to flip out quite yet, as I don't want to get myself in a

tizzy before talking with the GI....so any words of comfort here?

Thanks.

Debby

[Guest guest]

Wow Sandy....guess I really don't have that big a problem!You seem much worse

than I. I wish you well with the Lyrica. My neurologist put me on it, but I

found the Neuronton was better and cheaper for me, so stopped it. I also was

beginning to put on water weight with the med...was not fun!

Debby

[ ] Re: a big change in labs

Hi Debby,

I can certainly relate. My labs have been bad this year starting in

February with an all over lousy feeling. My sed rate is up in the

70's also.

Been back to the rheumy, GI and hep and none of them can figure out

why. Had a repeat biopsy in July and the liver shows no change from

the last one in 2001. So we have no idea what is going on. Hep is

just monitoring labs every 3 months right now. None of my labs are

really bad - the worst being the alk phos at 249 so no change in

treatment. I've been off prednisone since 2002 and off Imuran since

2003 - only treating the PBC with Urso Forte.

The only thing we've found is I developed Autoimmune Inner Ear

Disease in February. I lost the majority of my hearing in about an

hour. Left my house for an appt. for a physical and by the time I

got to the doctor's I really couldn't hear anymore. I did go on

prednisone for 2 weeks and it was determined oral prednisone no

longer works for me. Got a little of my hearing back by 4 steroid

injections.

Other than that, there seems to be no reason for my sed rate to be so

high. Costochondritis has been horrible the last few months along

with major joint pain. My rheumy thinks it's the fibromyalgia

worsening and I've just started taking Lyrica. We'll see how that

goes over the next 3 months. She also mentioned they are starting to

think of fibro as an autoimmune disorder too.

Take care,

Sandy C.

[Guest guest]

Thank you Dee for your kind words. I think I have gotten past the initial freak

stage of what I read! LOL...but I have a concert at church this weekend and do

not really have time to dwell on much more than church stuff for the weekend!

Thank you for your wisdom!

Debby

[ ] a big change in labs

Well, I am figuring that perhaps I have come out of remission, and need some

wisdom and words of encouragment until I can speak to the GI on Monday.

I saw my doctor in October and the labs we had done for that appointment were

done 9/20. My GI noticed the weight loss and didn't want me to lose much more

than 1 pound a week, but I am still losing about 2 pounds a week. She ordered

labs for 2 months rather than the quarterly she usually did. So, today,I had the

test done and got the results back this evening but I forgot to get them before

the GI's office closed.

When I received the labs (I have permission to obtain the results-at least the

GI thinks I have some brains! LOL) I freaked, which is WHY I should have done

the test on a day other than a Friday. Of course, my GI is NOT on duty all

weekend.

So.....the bad news is that my AST trippled, the ALT trippled, tjhe Albumijn

dropped, the Glob Seru dropped, but the Alkaline p-tase completely doubled. I

know that I have discussed with my GI that should the tests begin to rise, I

would have to go back on the med.

My problem is simple....I refuse to take the prednisone. Now, I have lost a

total of 105 pounds and am not willing at all to be put back on that. I will

return to the 6MP, and probably should have done so now.

One question that I have for anyone...I know that in the beginning, when I was

first dx with AIH, of course, there had been no treatment. Then, once I started

treatment and had a second biopsy, the results indicated that indeed I did

respond to treatment.

So now, I am wondering, is it a probability that I would have a bx before

going back on the meds? Just curious to know if anyone has been on this road

before. I do know that when I saw the GI last, she said I would have a bx within

the year. I think she though and saw that I was going out of remission by the

things that I told her.

Anyway, I am NOT going to flip out quite yet, as I don't want to get myself in

a tizzy before talking with the GI....so any words of comfort here?

Thanks.

Debby

[Guest guest]

PERFECT ! You know your path - don't hesitate to take it.

I know all this gets really scarey and so we all are supportive of your needs -

lean on this group for the stability you will need from time to time. We all

care. Good luck with your concert - you'll do WONDERFUL - I can feel it !

HUGS - God Bless.

Dee

[LiverSupport- L] a big change in labs

Well, I am figuring that perhaps I have come out of remission, and need some

wisdom and words of encouragment until I can speak to the GI on Monday.

I saw my doctor in October and the labs we had done for that appointment were

done 9/20. My GI noticed the weight loss and didn't want me to lose much more

than 1 pound a week, but I am still losing about 2 pounds a week. She ordered

labs for 2 months rather than the quarterly she usually did. So, today,I had the

test done and got the results back this evening but I forgot to get them before

the GI's office closed.

When I received the labs (I have permission to obtain the results-at least the

GI thinks I have some brains! LOL) I freaked, which is WHY I should have done

the test on a day other than a Friday. Of course, my GI is NOT on duty all

weekend.

So.....the bad news is that my AST trippled, the ALT trippled, tjhe Albumijn

dropped, the Glob Seru dropped, but the Alkaline p-tase completely doubled. I

know that I have discussed with my GI that should the tests begin to rise, I

would have to go back on the med.

My problem is simple....I refuse to take the prednisone. Now, I have lost a

total of 105 pounds and am not willing at all to be put back on that. I will

return to the 6MP, and probably should have done so now.

One question that I have for anyone...I know that in the beginning, when I was

first dx with AIH, of course, there had been no treatment. Then, once I started

treatment and had a second biopsy, the results indicated that indeed I did

respond to treatment.

So now, I am wondering, is it a probability that I would have a bx before going

back on the meds? Just curious to know if anyone has been on this road before. I

do know that when I saw the GI last, she said I would have a bx within the year.

I think she though and saw that I was going out of remission by the things that

I told her.

Anyway, I am NOT going to flip out quite yet, as I don't want to get myself in a

tizzy before talking with the GI....so any words of comfort here?

Thanks.

Debby

[Guest guest]

Thanks Dee!

Debby

[LiverSupport- L] a big change in labs

Well, I am figuring that perhaps I have come out of remission, and need some

wisdom and words of encouragment until I can speak to the GI on Monday.

I saw my doctor in October and the labs we had done for that appointment were

done 9/20. My GI noticed the weight loss and didn't want me to lose much more

than 1 pound a week, but I am still losing about 2 pounds a week. She ordered

labs for 2 months rather than the quarterly she usually did. So, today,I had the

test done and got the results back this evening but I forgot to get them before

the GI's office closed.

When I received the labs (I have permission to obtain the results-at least the

GI thinks I have some brains! LOL) I freaked, which is WHY I should have done

the test on a day other than a Friday. Of course, my GI is NOT on duty all

weekend.

So.....the bad news is that my AST trippled, the ALT trippled, tjhe Albumijn

dropped, the Glob Seru dropped, but the Alkaline p-tase completely doubled. I

know that I have discussed with my GI that should the tests begin to rise, I

would have to go back on the med.

My problem is simple....I refuse to take the prednisone. Now, I have lost a

total of 105 pounds and am not willing at all to be put back on that. I will

return to the 6MP, and probably should have done so now.

One question that I have for anyone...I know that in the beginning, when I was

first dx with AIH, of course, there had been no treatment. Then, once I started

treatment and had a second biopsy, the results indicated that indeed I did

respond to treatment.

So now, I am wondering, is it a probability that I would have a bx before

going back on the meds? Just curious to know if anyone has been on this road

before. I do know that when I saw the GI last, she said I would have a bx within

the year. I think she though and saw that I was going out of remission by the

things that I told her.

Anyway, I am NOT going to flip out quite yet, as I don't want to get myself in

a tizzy before talking with the GI....so any words of comfort here?

Thanks.

Debby