Remission

[Guest guest]

>From: A Colella <ecolella@...>

>Hello Everyone!!

>

>It was so nice to hear positive responses from all of you regarding my

>remission. Alot of you asked for additional information about me, so I'll

try my best to fill you all in.

>

>First, someone asked if I ever got yeast overgrowth under control. Well,

>it turns out that all that sickness I was feeling, tiredness, sinuses,

>etc. was a result of me being in really really late stages of

>endometriosis. I had surgery for that 6 months ago Although I am on

>the road to recovery from all of my health issues, I was in the hospital

>the past few days due to complications. That's why it took so long to

>respond to you, and I apologize for that.

>

>Okay, now that that's out of the way..

>

>I am 20 years old, and I have officially had RA since I was 17 (though I

>suspect that I had it much longer than that). I had been on the protocol

>since March '98. I took minocin everyday. Also, I took a multi-vitamin

>daily, as well as chondroitin for a few months.

>

>Now that I am in remission (although I don't want to say that too loud

>because I feel not so good joint wise today.. and I have a nodule on my

>right elbow), I only take a vitamin.

>

>Although I have been sick for 3 years, I still go to school full time. I

>will be a junior at SUNY Buffalo next fall, and I am a communication

>major.

>

>Also, I am trying to do things to bring closure to the whole thing.

>First, I went to my old rheumatologist, who refused to give me this

>therapy, and showed her paperwork that proved the success of this

>treatment. And most importantly, I showed her that I was a success story,

>considering she had originally said that I was " too sick " to even try it.

>If I can help someone else, then my trip to her office was worth it.

>

>Next, I started a support group at my university for students with chronic

>illnesses.

>

>I see this illness as nothing more than a learning experience, and as a

>chance for me to grow as a person and to understand myself better.

>

>Sorry for the lengthy email!!

>

>I hope to hear good news from all of you some day soon!!

>

>-

>

>

>

>

[Guest guest]

Tami, I'm so happy for your good news. Are you in remission with meds or on

nothing?

[Guest guest]

CREE,

I am inremission with meds. But they are greatly reduced. My Imuran

(azathioprine) is down fron 75mg to 50 mg. My Prednisone just got reduced to

3 mg! I maalso still on actigal and vit e. They also just addxced the beta

blocker. I am free from the side pain, and excited to have my meds reduced.

Thanks for the good wishes!

Tami AIH

[Guest guest]

Good for you!! I'm happy for you

[Guest guest]

Tami:

Good for you!! Keep up the good health.

Sue AIH

Wisconsin

[Guest guest]

Tami, thats great that you're able to be down to such a low dose of pred. I

am on 50mgs of azathioprine and 5 mgs of pred. I get blood work done next

week and if it is normal than I get to go off of pred altogether. I am

hopeful because I have felt better on this combo of 50/5mgs than I have in a

long time.

Roxanne

[Guest guest]

Roxanne,

Congratulations! Let me know how it oges being off the pred!

Tami (AIH)

[Guest guest]

Roxanne,

Will you drop down from 5 mgs. of prednisone to -0- all at once? I ask

because of the problems I had when I got down below 8 mgs., and because

right now I'm on a tapering dose of 8/7/8/7/8/7/8 and beginning to feel

some VERY negative effects again. For some people, apparently it can take

6-12 months for complete restoration of the body's natural adrenal system

and I suspect that I'm one of them. I'm still taking 50 mgs. of Imuran,

though, and will continue.

Take care,

Geri

[Guest guest]

In a message dated 6/19/99 12:18:48 PM Eastern Daylight Time,

enterprz@... writes:

<< Janet-Montana RAl2

AP l4mths, and will continue the Minocycline w >>

Hi Janet,

We are all cheering with you. Hip hip hooray!!! You have given hope to all

the rest of us. Are you sure it isn't all of that Montana air and sunshine?

Hugs, Anita

[Guest guest]

I am happy to say that I have been off prednisone for three weeks and I went

to the doc on Monday and my ALT is 16 and AST 25! I am still taking 50mgs of

azathioprine but no more prednisone (at least for now). I know it has only

been two weeks and I could still flare, but this is looking good. I am

hopeful and it feels good to make a step forward.

Elena, in answer to your question, no I was not on prednisone for the one-two

years that my enzymes were elevated. Once I got on prednisone they

immediately went way down to the normal range.

Roxanne

[Guest guest]

Elena:

What is azathriopan (I hope I spelled it right)? I can't recall ever hearing of

it.

Kaye AIH Ohio

CREE8V1@... wrote:

> From: CREE8V1@...

>

> I am happy to say that I have been off prednisone for three weeks and I went

> to the doc on Monday and my ALT is 16 and AST 25! I am still taking 50mgs of

> azathioprine but no more prednisone (at least for now). I know it has only

> been two weeks and I could still flare, but this is looking good. I am

> hopeful and it feels good to make a step forward.

>

> Elena, in answer to your question, no I was not on prednisone for the one-two

> years that my enzymes were elevated. Once I got on prednisone they

> immediately went way down to the normal range.

>

> Roxanne

>

> ---------------------------

[Guest guest]

I believe it is an immunosuppresant.

Elena

--- Kaye Gillis <kgillis@...> wrote:

> From: Kaye Gillis <kgillis@...>

>

> Elena:

>

> What is azathriopan (I hope I spelled it right)? I

> can't recall ever hearing of

> it.

>

> Kaye AIH Ohio

>

> CREE8V1@... wrote:

>

> > From: CREE8V1@...

> >

> > I am happy to say that I have been off prednisone

> for three weeks and I went

> > to the doc on Monday and my ALT is 16 and AST 25!

> I am still taking 50mgs of

> > azathioprine but no more prednisone (at least for

> now). I know it has only

> > been two weeks and I could still flare, but this

> is looking good. I am

> > hopeful and it feels good to make a step forward.

> >

> > Elena, in answer to your question, no I was not on

> prednisone for the one-two

> > years that my enzymes were elevated. Once I got

> on prednisone they

> > immediately went way down to the normal range.

> >

> > Roxanne

> >

> > ---------------------------

[Guest guest]

Roxanne:

Great to read about your test. Keep it up and hope you can stay off

prednisone

Sue AIH

Wisconsin

[Guest guest]

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Remission

>Date: Fri, 9 Jul 1999 00:45:19 EDT

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>From: KATBERCOO@...

>

>Dear :

>

>I've been in prednisone induced 'remission' for a little more than a year

>and

>a half. For me the symptoms of the AIH went away except for the left side

>pain. Most of the problems that I have now are due to the prednisone, and

>not to the AIH itself. I'm not sure how much of the edema and ascites are

>due to the medication or to the condition of my liver. They are not able

>to

>answer these questions for me when I ask. But once your levels stabilize,

>you will start to feel a lot better.

>

>Kathy (AIH)

>Seattle area

Kathy,

I am worried about what I will look like when on prednisone. My belly

already so big I look pregnant!

I am still in diagnosis phase. Had cat scan of abdomen, next up is

laporoscopy Thursday. After that, i guess will have ercp.

>

>---------------------------

[Guest guest]

:

I haven't been in remission yet. Keep relapsing. Damn

Sue AIH

Wisconsin

[Guest guest]

Dear :

I've been in prednisone induced 'remission' for a little more than a year and

a half. For me the symptoms of the AIH went away except for the left side

pain. Most of the problems that I have now are due to the prednisone, and

not to the AIH itself. I'm not sure how much of the edema and ascites are

due to the medication or to the condition of my liver. They are not able to

answer these questions for me when I ask. But once your levels stabilize,

you will start to feel a lot better.

Kathy (AIH)

Seattle area

[Guest guest]

,

Since I've been in " remission " for several months, I guess I can answer

your question, at least from my own experience.

Someone told me that " remission " mainly means that the disease isn't

getting worse, but it's not necessarily getting better either. It's simply

dormant. I don't know if that's a medical explanation, though.

So, since I had stage IV cirrhosis before remission, I assume that my

liver is still a mess. Mostly, the things that bother me right now seem

to be related to the meds I take. Considering what those meds are, those

" things " aren't always anything to sneeze at. I'm now in early

osteoporosis, for example. I have chronic and fairly severe congestion,

shortness of breath and continue to have pain in my left side that's

unexplained - and I'm not sure I want to know what is causing it. I don't

have the stamina I used to have and I sleep too soundly. Bob has a hard

time waking me up these days. My back and legs ache all of the time, but

less than a couple of weeks ago. However, with all that, I don't feel

" sick " , though I probably sound like a mess. I don't think I look sick

either. I'm still Madame Butterball wishing to be Madame Butterfly. Maybe

this is the new me but I hope not.

Probably, the worse your condition is when you finally go into remission,

the less " normal " you will be. However, I am so very thankful that

remission is possible and even likely! I do think that you have an age

advantage and your basic vigor and enthusiasm will help you avoid letting

the meds drag you down too much physically.

Take care,

Geri

[Guest guest]

Hello,

I guess I have been in " remission " for 6 or 7 years. I do have elevated

enzymes, but not enough to give me any real discomfort. Actually, they have

been up a little just since Nov. 1998. Hopefully, things won't be getting

worse. I am trying to get off of Prednisone. I am at 3 1/2 mgs. a day right

now. I have other problems because of the pred. I have come to the

conclusion that I am much better off than most of the people I am reading on

this list. I guess you could say that the symptoms go away and that I lead a

normal life. I don't work however. I can't hack it. I have had CAH since I

was 18 (1983). I am new to this list.

[Guest guest]

Hi Elena,

Thanks for your note. I apparently have scarring and possibly some cirhosis,

I don't know anymore. My initial biopsy was " inconclusive " . I was treated

based on symptoms. I was in the 300 range for sgot and sgpt (now known as

ast and alt). Two subsequent biopsies showed scarring and maybe some

cirrhosis (I can never spell that). I am 34 now. You say you were just

diagnosed....how are you doing with all this?

[Guest guest]

Hi Elena,

The meds are disgusting. Talk about a two sided coin. Please excuse my

attitude today. I have been a little down again and am having a hard time

getting out of the hole. I am glad that you are feeling well. It is great

to have normal liver function tests. Mine right now are in the 60's. Not

too high, but not too great either. I have a pretty bad case of osteoporosis

and cannot tolerate the meds for that. So, I am working away through diet to

try and improve my situation. If you are on prednisone, don't let them tell

you that 10-15 years is a long way away....it will be here before you know.

Pay attention to your bones NOW!

I suppose that I am in pretty good shape. I did have a baby in 1998, which

we thought would never happen. I guess that when I read all the long term

stuff on the liver junk I get a little out of it....I swore off the doctors

for a couple of years because they were so depressing. I recently have been

going back to the doctor and once again, I have a really hard time after a

visit. All it does is throw the whole mess in my face. There are a lot of

ups and downs, literally, with chronic illness. I just happen to be a bit on

the down side right now. I know it will get better again. Are you taking

meds?

[Guest guest]

Welcome to the list ,

Im sorry to hear you got AIH at such a young age. Do

you have damage to your liver, or just inflammation.

How high have your liver enzymes been?

I am 28yrs old and just got diagnosed. But at the

moment my AIH is inactive. I did have elevated enzymes

(194) for about 2 months but then sponateously

resolved, and now is in the normal range.

Elena

--- Ceallachqn@... wrote:

> From: Ceallachqn@...

>

> Hello,

> I guess I have been in " remission " for 6 or 7 years.

> I do have elevated

> enzymes, but not enough to give me any real

> discomfort. Actually, they have

> been up a little just since Nov. 1998. Hopefully,

> things won't be getting

> worse. I am trying to get off of Prednisone. I am

> at 3 1/2 mgs. a day right

> now. I have other problems because of the pred. I

> have come to the

> conclusion that I am much better off than most of

> the people I am reading on

> this list. I guess you could say that the symptoms

> go away and that I lead a

> normal life. I don't work however. I can't hack

> it. I have had CAH since I

> was 18 (1983). I am new to this list.

>

> ---------------------------

[Guest guest]

That must be hard for you. Did you have this scarring

on diagnosis? or did occur over the years after? 300

is certainly high, mine luckily havent made it up

there yet. Yes I was just diagnosed last April. I am

one of the lucky ones though. I caught it early, with

my biopsy just showing mild inflammation. My enzymes

are normal again. As long as it all stays like that im

happy!

How are you finding the meds?

Elena

--- Ceallachqn@... wrote:

> From: Ceallachqn@...

>

> Hi Elena,

> Thanks for your note. I apparently have scarring

> and possibly some cirhosis,

> I don't know anymore. My initial biopsy was

> " inconclusive " . I was treated

> based on symptoms. I was in the 300 range for sgot

> and sgpt (now known as

> ast and alt). Two subsequent biopsies showed

> scarring and maybe some

> cirrhosis (I can never spell that). I am 34 now.

> You say you were just

> diagnosed....how are you doing with all this?

>

>

> ---------------------------

[Guest guest]

Im sorry to hear your going through a rough patch at

the moment. Hang in there, it will get better. Yes,

ive realized after joining this list how much i dont

want to go on prednisone. If anything I would just

like to go on imuran, and thats all. I am very

fortuante that at the present time I dont have to go

on meds. Although my enzymes are low I still have

symptoms. Such as upper right quadrant pain and

tenderness.

Congratualtions on your baby. Thats great. It was one

of the things im worried about. Im scared I wont be

able to have kids.. who knows....

So am i right in saying that you are not on meds now.

60 is good but hopefully it wont stay at 60 but will

go back to normal.

I can understand your frustration with doctors, it is

depressing. Thats why im looking forward to a period

of a few months of not seeing any, Ye ha!

wishing you the best

Elena

--- Ceallachqn@... wrote:

> From: Ceallachqn@...

>

> Hi Elena,

> The meds are disgusting. Talk about a two sided

> coin. Please excuse my

> attitude today. I have been a little down again and

> am having a hard time

> getting out of the hole. I am glad that you are

> feeling well. It is great

> to have normal liver function tests. Mine right now

> are in the 60's. Not

> too high, but not too great either. I have a pretty

> bad case of osteoporosis

> and cannot tolerate the meds for that. So, I am

> working away through diet to

> try and improve my situation. If you are on

> prednisone, don't let them tell

> you that 10-15 years is a long way away....it will

> be here before you know.

> Pay attention to your bones NOW!

>

> I suppose that I am in pretty good shape. I did

> have a baby in 1998, which

> we thought would never happen. I guess that when I

> read all the long term

> stuff on the liver junk I get a little out of

> it....I swore off the doctors

> for a couple of years because they were so

> depressing. I recently have been

> going back to the doctor and once again, I have a

> really hard time after a

> visit. All it does is throw the whole mess in my

> face. There are a lot of

> ups and downs, literally, with chronic illness. I

> just happen to be a bit on

> the down side right now. I know it will get better

> again. Are you taking

> meds?

>

> ---------------------------

[Guest guest]

Hi Elena,

Yes, I am thrilled to have my daughter. She is the highlight in my life! I

am only on 3 1/2 mgs. of prednisone right now. I went through my 20's

thinking I would never have children. I was on Imuran and prednisone and had

unstable liver function. I also have lupus and had a bad flare in 1997. I

was 40 mgs of prednisone then. I became pregnant in June of 1997 and had a

great pregnancy. No problems for me or my baby. You never know...try not to

worry too much about the baby thing....for me it just happened and it worked

out. I think that is the best way. There are so many things that I have not

done....I no longer work, I never finished college - kept getting sick, I

have given up a lot of activities...I used to love to dance but I haven't had

the energy for that since I was 24. Waaa waaa waaa. I really sound like a

sob story here. I have gained in other ways though. I am way ahead of my

peers in terms of spirituality and understanding what other people are going

through. Psychologically I am much better off than a lot of my peers.

Chronic illness has a way of making you face your fears and shortcomings. At

any rate, I am really lucky to have my daughter and to have a husband who

understands and supports me.

I am curious, how did your labs get back to normal without medication? Did

they just all of a sudden get better or what? I have never really had liver

pain as you describe. Sometimes I have an ache in my right side up high, but

it usually goes away if I rest. It sounds like you have symptoms without

having elevated enzymes. Of course, I guess that should not surprise me. I

had symptoms without elevated enzymes as well, but I attributed it to the

lupus.

[Guest guest]

,

My docs have me in " remission " , symptoms are still there. Although I am not

as sick as I was. Fatigue, joint pain and muscle pain all still there.

SueB.

----------

> From: emily simpson <esimpson7@...>

> onelist

> Subject: [ ] Remission

> Date: Friday, 9 July 1999 14:38

>

> From: " emily simpson " <esimpson7@...>

>

> Hi everyone,

>

> I was just wondering, for those of you who are or have been in remission

> (wonderful word!), do the symptoms of AIH go away? My doctor told me

yes,

> but I'm skeptical because I don't recall ever reading anything like that

> here. Hoping he's right!!!

>

>

>

>

> ---------------------------