Sue

[Guest guest]

Sue,

I always consider myself lucky to have AIH as opposed to other potential diseases/conditions. I was always thankful that 'at least I didn't have cancer' well, now I've had cancer and I still feel the same. Cancer treatment was HORRIBLE, my heart goes out to anyone that has it.

AIH is a disease that can be controlled, our challenge is to survive the treatment, that is where this group can come in. We have collectively lived full satisfying lives despite our constant problems with our GI problems, fatigue, weight gain etc. I think feeling trapped is something we can all understand.

Quite a while ago, Someone in this group had the expression

"we cannot control our disease but we can control the way we react to it'.

Sue, being newly diagnosed, give yourself some time to grieve the loss of health. You need to do that for yourself. But stick with us and we'll help.

Patty

-----Original Message-----From: The Mauks [mailto:tmauk@...] Sent: Monday, June 09, 2003 9:00 AM Subject: Re: [ ] SueTo All, my prayers & thoughts go out to those in need. I wondered how anyone's health is at the time of diagnosis- a rollercoaster or smooth sailing(as much as it can be). I am only taking prednisone but it is a matter of time before I start on Imuran too. I hate revolving my life around this 'illness', but it has affected my life & my family's so drastically that I feel trapped. Does anyone else feel this way? How 'bad' is this disease? It seems that I find encouraging info at one site & frightening info at another. Am I over exaggerating my ailments(just take them in stride) or come to terms with the effects on my body. Hope I'm making sense but they is no real support except from fellow 'sufferers'. Thanks, Sue Ian & Janet wrote:

Hi Sue...welcome to the Group. I was dx AIH 1997 and also had to give up mycareer at the same time. Your hep spec sounds a happy chappy. If I listen toall my docs & specs advice, to quote from someone in this group, I shouldhave been on the other side of the dirt, ages ago. Its great that you'redown to 8mgs from such a massive dose initially. If you have any questions,theres a lot of knowledgeable people here. I hope your having a good day.Love Jan>>

[Guest guest]

Hi Sue, It is difficult when you first get diagnosed. When it happened to me in 1998 I think I went into shoke and didn't know which way to turn first.My doctor seemed rally pleased with it because all he would say was " this is very rare and I have never seen this before I will have to find out what you need" luckly times have changed it is not quite as rare as it was but still relatively unheard of. When I have to go into ER the doctors always ask how they should treat me I always tell them what i need and tell them to treat me the same as anyone else. Where I live the word Hepatitis frightens people silly.

Take your medicines on time, are you on Prednisolone if so take it early in the morning because some people find they need to keep moving and working when they have had it also stay out of the sun if it's possible because you will be more prone to get sun burnt, when you are out us a good sun screen.

Be kind to your self if you feel that you are tired you must rest and listen to what your body tells you. Take time in accepting this diagnosis don't rush there are times when i feel it's to much and i want to give it all up but tommorrow is another day. If you want you can mail me direct my address is jeanette_cuk@...

Love jeanette UK Dx AIH 1998, Cirrhosis Dx 2001The Mauks <tmauk@...> wrote:

To All, my prayers & thoughts go out to those in need. I wondered how anyone's health is at the time of diagnosis- a rollercoaster or smooth sailing(as much as it can be). I am only taking prednisone but it is a matter of time before I start on Imuran too. I hate revolving my life around this 'illness', but it has affected my life & my family's so drastically that I feel trapped. Does anyone else feel this way? How 'bad' is this disease? It seems that I find encouraging info at one site & frightening info at another. Am I over exaggerating my ailments(just take them in stride) or come to terms with the effects on my body. Hope I'm making sense but they is no real support except from fellow 'sufferers'. Thanks, SueIan & Janet wrote:> Hi Sue...welcome to the Group. I was dx AIH 1997 and also had to give > up my> career at the same time. Your hep spec sounds a happy chappy. If I > listen to> all my docs & specs advice, to quote from someone in this group, I should> have been on the other side of the dirt, ages ago. Its great that you're> down to 8mgs from such a massive dose initially. If you have any > questions,> theres a lot of knowledgeable people here. I hope your having a good day.> Love Jan>> >> >

[Guest guest]

Sue your doctor is a nut. My stomach hurts and so do a lot of other peoples. Most of us are on meds for our stomachs.

It can take a long time to come down off the pred. I always go into relapse so now they keep me at 10 mg.

As for your SSI are you going with a lawyer? Make sure you have all medical records you can find even a visit for a hangnail. What you can't get they can. Make them understand the fatigue and compromised immune system. Get letters from your dr. All of them.

If you have a lawyer they should have done all this.

Anymore questions let me know.

the WV hillbilly

[Guest guest]

Sue,

The hepatologist I saw at Vanderbilt in Nashville, TN recommended a

treatment plan similar to the one your doctor is following for you. He said

that I should be on the lowest dose of prednisone possible to keep my liver

enzymes at less than two times normal. He said if more than 5 mg of

prednisone daily was needed to achieve that goal, then Imuran should be

added. When I saw the hep in April, I was on 10 mg prednisone daily. I was

having episodes of my liver enzymes going back up to more than 10 times

normal. On the day I saw him, one of my liver enzymes was just above normal

but the other was 3 times normal. The hep felt the spikes in my liver

enzymes (when they were going to 10 + times normal) was due to my pancreas

or bile ducts and not the AIH or my liver. He gave recommendations on my

treatment and then just said he wanted to see me in a year. I ended up in

the hospital the end of May with a definite attack of acute pancreatitis -

after months of my old GI doc and the local ER docs blaming my pain, nausea,

vomiting, and spikes in my liver enzymes on the AIH/my liver. Ends up that

if they'd only bothered to check both of my pancreas enzymes (amylase and

lipase), they'd have found that my lipase was elevated and the pain, nausea,

and vomiting was definitely caused by my pancreas. I was referred to a new,

WONDERFUL, GI who specializes in pancreas/liver problems. He diagnosed me

with relapsing idiopathic chronic pancreatitis. He added actigall and

pancreas enzymes to my ever growing list of meds. He doesn't know what

caused the chronic pancreatitis but thinks it is at least partially caused

by my bile not flowing properly - thus the actigall. Anyway, my new GI

started me on Imuran 100 mg daily on June 25th. If my liver enzymes stay at

less than two times normal (other than when I am having pancreatitis

attacks) he will begin tapering my prednisone VERY slowly in August. He

will drop the prednisone by only 1 mg per month and will do a hepatic

function panel and CBC monthly for the rest of my life. His goal is to get

me off the prednisone completely, if at all possible, because he feels

prednisone has a higher risk of aggravating the pancreas than Imuran.

However, it will take about a year to totally get me off of prednisone.

W

[Guest guest]

, Thanks for the info. My new primary md. is very open to my suggestions,

so I might suggest adding amylase & lipase to the lab list. Take care,

Sue

Weston wrote:

Sue,

The hepatologist I saw at Vanderbilt in Nashville, TN recommended a

treatment plan similar to the one your doctor is following for you. He

said

that I should be on the lowest dose of prednisone possible to keep my liver

enzymes at less than two times normal. He said if more than 5 mg of

prednisone daily was needed to achieve that goal, then Imuran should be

added. When I saw the hep in April, I was on 10 mg prednisone daily. I

was

having episodes of my liver enzymes going back up to more than 10 times

normal. On the day I saw him, one of my liver enzymes was just above normal

but the other was 3 times normal. The hep felt the spikes in my liver

enzymes (when they were going to 10 + times normal) was due to my pancreas

or bile ducts and not the AIH or my liver. He gave recommendations on my

treatment and then just said he wanted to see me in a year. I ended up

in

the hospital the end of May with a definite attack of acute pancreatitis

-

after months of my old GI doc and the local ER docs blaming my pain, nausea,

vomiting, and spikes in my liver enzymes on the AIH/my liver. Ends up that

if they'd only bothered to check both of my pancreas enzymes (amylase and

lipase), they'd have found that my lipase was elevated and the pain, nausea,

and vomiting was definitely caused by my pancreas. I was referred to a

new,

WONDERFUL, GI who specializes in pancreas/liver problems. He diagnosed

me

with relapsing idiopathic chronic pancreatitis. He added actigall and

pancreas enzymes to my ever growing list of meds. He doesn't know what

caused the chronic pancreatitis but thinks it is at least partially caused

by my bile not flowing properly - thus the actigall. Anyway, my new GI

started me on Imuran 100 mg daily on June 25th. If my liver enzymes stay

at

less than two times normal (other than when I am having pancreatitis

attacks) he will begin tapering my prednisone VERY slowly in August. He

will drop the prednisone by only 1 mg per month and will do a hepatic

function panel and CBC monthly for the rest of my life. His goal is to

get

me off the prednisone completely, if at all possible, because he feels

prednisone has a higher risk of aggravating the pancreas than Imuran.

However, it will take about a year to totally get me off of prednisone.

W

[Guest guest]

Thanks, Tess. Ain't that usually the way of it? You take medication for

one thing, and it causes problems somewhere else. We just can't win for

losing. My kidneys so far are fine, too, and I certainly hope they stay

that way. My endo keeps a check on that, so I'll just keep on taking

Celebrex, since it does seem to be helping my RA.

Sue

On Saturday, November 8, 2003, at 01:02 PM, tess_northwest@...

wrote:

> Hi Sue...my internist and rheumy both said they were concerned about

> potential kidney problems with cox-2 inhibitors such as Vioxx and

> Celebrex. My kidneys are fine, but I've had diabetes since 1990, so

> they're very cautious.

[Guest guest]

Thanks so much, Sue! I do have a wonderful doctor. He's my MD, and really

cares about my quality of life. My rheumy is pretty good, too. I've been

fortunate to get a quick diagnosis and good treatment, in spite of (or

perhaps because) of the fact that I don't have insurance (both of us are

self employed.)

Hugs,

Carol

Re: [ ] Went to the doctor...

Carol,

I'm glad that your doctor visit was productive and that you feel better

about things now. I hope that your depression will soon be resolved.

You seem to have a wonderful doctor. Good luck to you. Sue

[Guest guest]

Thanks, Tawny. I do appreciate it. Hope that you are doing okay.

Sue

On Thursday, May 27, 2004, at 07:38 PM, Tawny wrote:

> Sue, Sorry to hear that your not feeling well, I will keep you in my

> prayers, take care Tawny

[Guest guest]

Hi Sue, I am hangin' in here, hugs Tawny

>

> > Sue, Sorry to hear that your not feeling well, I will keep you in

my

> > prayers, take care Tawny

[Guest guest]

Nope, Christie isn't due until the end of October but she is taking

it easy.

Natasha

> > Hello,

> >

> > Do any other members currently go to Cranial Technologies

Durham,

> NC

> > location? I just thought I'd let everyone know that CT's Durham

> > office will be closing in January 2005. They won't be casting

> there

> > anymore and will only be seeing patients that have already

started

> > treatment. If a child needs another band they will have to go

to

> > another location.

> >

> > I sure was disappointed when I heard the news. However, I'm so

> > grateful that they will be staying open until January 2005.

> > Currently, a technician from their Charlotte office is coming to

> > town Mon - Wed. I believe she'll be alternating with another

> > technician who will be coming from VA.

> >

> > Dianna

> > Mom to

> > DOC Band 9/13

> > plagio/brachy

[Guest guest]

---

Hi Leanne,

I didn't know if you were writing to me or the other " Sue " !! I love

reading your messages and I pray that Owen has been well. I can't

believe how much Enbrel costs!! You'd think it was made of gold!!

lol!!

God Bless, Sue.

In , " taschic6 " <cookie6@e...>

wrote:

> Hello, we too have recently been to the Rheumy.Now, for a 14 y.o.

to

> qualify for PBS Enbrel, Owen needs to have been on mtx for 12 weeks

> or has 4 major joints / 20 small joints involved. Isn't it terrible.

> As if your life isn't difficult enough, you now have to hit " goals " .

> It's funny, we were only just wondering how much Enbrel would cost

if

> we paid for it ourselves, my gawd! That much...

> Thinking of You

> Leanne

[Guest guest]

Sue:

Thank you! Hope that you have/had wonderful holidays.

and Rob 15 Spondy

Hi ,

Thank you for thoughts and I would like to send wishes to you and

Rob and your family for happy holidays and wonderful new year.

Sue and Mackenzie, 7, Sys

[Guest guest]

Thanks, Joan. This is the correct doctor. I'm sure there wouldn't be

two with that unusual surname. Sue

On Sunday, June 12, 2005, at 12:04 AM, Joan Arnold wrote:

> Here you go, Sue. Hope this is the correct Doctor:

[Guest guest]

Thanks, Joan. This is the correct doctor. I'm sure there wouldn't be

two with that unusual surname. Sue

On Sunday, June 12, 2005, at 12:04 AM, Joan Arnold wrote:

> Here you go, Sue. Hope this is the correct Doctor:

[Guest guest]

You are very welcome, Sue. Glad I could be of some help.

Joan

Sue wrote:

> Thanks, Joan. This is the correct doctor. I'm sure there wouldn't be

> two with that unusual surname. Sue

>

> On Sunday, June 12, 2005, at 12:04 AM, Joan Arnold wrote:

>

> > Here you go, Sue. Hope this is the correct Doctor:

>

>

>

[Guest guest]

You are very welcome, Sue. Glad I could be of some help.

Joan

Sue wrote:

> Thanks, Joan. This is the correct doctor. I'm sure there wouldn't be

> two with that unusual surname. Sue

>

> On Sunday, June 12, 2005, at 12:04 AM, Joan Arnold wrote:

>

> > Here you go, Sue. Hope this is the correct Doctor:

>

>

>

[Guest guest]

Sue

The same here...lol I had the same thing done when I had breast cancer.It is

a bit embarrassing but it had to be done..

joyce

Sue <marysue@...> wrote:

Tess,

They had to take " nakey " pictures of my breast before radiation

treatments following a lumpectomy for breast cancer. It was totally

embarrassing. I hope they've destroyed them now, but they probably keep

them on file. It wasn't any fun baring my breast every week day for

seven weeks. But we do what we have to.

I hope your surgery goes well. My thoughts and prayers will be with you.

Sue

[Guest guest]

Hi Sue, You are in a much better spot than I am with your tooth situation! It seems to me that you would be very well served with a bridge, which is a fake tooth which rests upon the other teeth on either side of it. I just found out that one of our friends has a bridge with 3 fake teeth right in the same spot as yours, and I could not tell at all! I would have never known. And since you aren't putting anything into the gum or bone tissue, I would think it would be very safe. I don't have the choice to do a bridge, because there is nothing to rest it on at the back. It was my last two molars on the bottom left. I hate not having those teeth there. I sure wish we had answers on the dizziness issue. It has got to be so discouraging to face that day after day. I remember it well. I really wanted to not go on with it. But, I had to

believe that God had something planned in my life, and He did. I have to believe that there is an answer for you too, Sue. It is encouraging that the neck adjustments work for a day or two...at least you know you have some clue as to what is working. I am wondering if you couldn't do something with your diet to make sure you blood is thinner, which might help it carry oxygen better? I really don't have clear answers, but I know that I tried so many things when I had dizziness too. What else are you trying for it? Have you done much in the way of exercise? Are you using your sauna still or taking a break from it? I'll be praying for you Sue! Pattygibbense@... wrote: Hello Patty lovely to hear from you. Sorry to hear about your teeth, its such a horrible thing to go through I feel sorry for you. I have not done anything with my tooth I am ashamed to say, But have got really clever at talking with my lip down so its not noticeable, I also never smile with an open mouth. I really need to get it sorted but I am not sure what to do, I have an awful fear that putting in a false tooth will cause me no end of problems. The Dizziness is still a major problem, I wake with it every morning, my osteopath has said its related to my neck and after having my neck clicked it seems to improve for a day or so but it doesn't last. I have been seeing the osteopath twice a week and its costing me £58.00 per week so I hope to see some improvement since stopping work. I hope your teeth soon settle down Good to hear

from you. Love and blessings Sue

goes everywhere you do. Get it on your phone.

[Guest guest]

,

He is absolutely wonderful. He is so kind and compassionate, and also

very accessible. He always urged me to call him if I had questions or

trouble, and he'd call back that day. He's the best doctor I've ever

had. I wish I could move to Atlanta, so that he could still be my

doctor. I wanted to cry when I found out that he was moving from North

Carolina to Atlanta. Here is his information:

Dr. G. Sutej

980 Ferry Road,

Atlanta, Georgia (GA)

(404) 255-5956

Fax (404) 255-3908

Good luck. Let me know if you call for an appointment.

Sue

On Monday, July 3, 2006, at 06:45 PM, Tait wrote:

> I am near Macon-about 2 hours from Atlanta but recommend anyway cuz I

> can

> always drive for a good doctor.

> Hugs,

>

[Guest guest]

Sue

What part of NC are you in? I'm in ville! I go to Hickory to see the

rheumy but won't be going back to him, just not happy with what he does/doesn't

do.

Hugs

[Guest guest]

,

I'm in son County, in the middle of the state. I live in the tiny

town of Denton. Hello to a fellow North Carolinian.

Denton has the annual Threshers' Reunion the week of the Fourth. You

may have heard of that, or maybe not, if you're not into such things as

old timey farm implements, LOL. They have added a doll museum this year

that I'd like to see, but it's been so hot that I haven't ventured out.

Tomorrow is the last day, and I believe it's supposed to be 97 degrees.

Sue

On Monday, July 3, 2006, at 10:07 PM, Bickford wrote:

> Sue

> What part of NC are you in? I'm in ville! I go to Hickory

> to see the rheumy but won't be going back to him, just not happy with

> what he does/doesn't do.

> Hugs

>

>

[Guest guest]

Sue

Wow, gonna be hot there! It is going to be very warm here also, around 89 I

think they just said on the news. Wednesday we are due to get rain and bring

the temps back down into the 70's!! I don't tolerate the heat very well

anymore. It just seems to suck the little energy I have.

Hope you all cool down in a day or two!

Hugs

[Guest guest]

Hi Sue! I am happy for you that your blood tests are normal! That's just the way it should be (so at least you know you don't have to be put on tons of drugs, right?). Let us know what happens with the neurologist. I just really hope and pray that you find some relief, although I would much rather see it happen on a natural basis rather than through dangerous stuff...but you deserve to see improvement after all the time you have struggled. I hope you get some answers. By the way, did you ever see Dr. Myhill? Pattygibbense@... wrote: Well I got my results today from my blood tests, thyroid normal, hormones normal, liver normal..everything normal. One piece of good news though they are referring me to a neurologist at long last so maybe we are breaking the ice. I didn't mention anything else today I am just happy to be being referred to someone, I will see how that goes and maybe take my information to him rather than my doctor. Love Sue.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

No, I don't but if people can suggest some that are small I'll try them. The

large coated or not vitamin type things choke me Every time. I'm also

allergic to fish, iodine. Found out the hard way I can't take Actonel

either........horrible hives.

Thank you!

<Sue, can I just ask you if you take any supplements? A vegetarian diet

will leave you deficient in some key vitamins and amino acids unless

you supplements them.

••AKBraTz DisClaimer••

Copyright©2007*

You have Asked to Join Our List, an have Filled out a Disclaimer saying so.

Therefor, you have Agreed not to TOS any members or staff of this list,

you also have agreed to a 48t o 72 Hour waiting time for Removal. All Links

are provided Below to get In contact With Us if you need to.

You Signed A Disclaimer Agreeing To Give US

72 Hour's To Get You [ COMPLETELY] Removed.

And up to 48 hours to put U on hold.

You also agreed by signing the disclaimer not TOS any other member of

Angel & Kattz Bratz

THIS IS NOT_Unsolicited E-Mail (SPAM_

(http://everythingemail.net/email_unsolicited.html) )

Do Not Forward Any Of Our Mailing's Copy And Paste It To A New email

|_How To Copy & Past_ (aol://4344:2452.COPY.26152335.564606839/) e |

(mailto:ANGELTWO98@...?SUBJECT=PLEASE HOLD MAIL & BODY=PLEASE FILL IN

DATESFROM____TO_____) |HOLD MAIL|

|_Add Me Back Pl_ (mailto:ANGELTWO98@...?SUBJECT=[DND] ADD ME BACK TO BRA

TZ PLEASE) z | (mailto:Angeltwo98?subject= Name Change) |Name Change |

|_Remove Me Pleas_ (mailto:ANGELTWO98@...?SUBJECT= REMOVE ME:: & BODY=MAY

I ASK WHY AND DID YOU ENJOY YOUR STAY?) e |

(mailto:ANGELTWO98@...?SUBJECT=ADD_ME_BACK_TO_BRATZ_PLZ) IAdd Me Back PlzI

(mailto:Angeltwo98?subject=I

Recieved this as a Forward) |Recieved this as a fwd! |

|_I need to talk to you gurlies_ (mailto:Angeltwo98,Kattzscratch?subject=I

NEED TO TALK TO YOU) ! | (mailto:Angeltwo98%20?subject= Angel Can We Talk ?)

|Angel I Really Need To Talk |

Any ARTWORK done From AKB is strictly for FUN

Hey, Bush Supporters: Embarrassed Yet?

************************************** See what's free at http://www.aol.com.

[Guest guest]

No, I don't but if people can suggest some that are small I'll try them. The

large coated or not vitamin type things choke me Every time. I'm also

allergic to fish, iodine. Found out the hard way I can't take Actonel

either........horrible hives.

Thank you!

<Sue, can I just ask you if you take any supplements? A vegetarian diet

will leave you deficient in some key vitamins and amino acids unless

you supplements them.

••AKBraTz DisClaimer••

Copyright©2007*

You have Asked to Join Our List, an have Filled out a Disclaimer saying so.

Therefor, you have Agreed not to TOS any members or staff of this list,

you also have agreed to a 48t o 72 Hour waiting time for Removal. All Links

are provided Below to get In contact With Us if you need to.

You Signed A Disclaimer Agreeing To Give US

72 Hour's To Get You [ COMPLETELY] Removed.

And up to 48 hours to put U on hold.

You also agreed by signing the disclaimer not TOS any other member of

Angel & Kattz Bratz

THIS IS NOT_Unsolicited E-Mail (SPAM_

(http://everythingemail.net/email_unsolicited.html) )

Do Not Forward Any Of Our Mailing's Copy And Paste It To A New email

|_How To Copy & Past_ (aol://4344:2452.COPY.26152335.564606839/) e |

(mailto:ANGELTWO98@...?SUBJECT=PLEASE HOLD MAIL & BODY=PLEASE FILL IN

DATESFROM____TO_____) |HOLD MAIL|

|_Add Me Back Pl_ (mailto:ANGELTWO98@...?SUBJECT=[DND] ADD ME BACK TO BRA

TZ PLEASE) z | (mailto:Angeltwo98?subject= Name Change) |Name Change |

|_Remove Me Pleas_ (mailto:ANGELTWO98@...?SUBJECT= REMOVE ME:: & BODY=MAY

I ASK WHY AND DID YOU ENJOY YOUR STAY?) e |

(mailto:ANGELTWO98@...?SUBJECT=ADD_ME_BACK_TO_BRATZ_PLZ) IAdd Me Back PlzI

(mailto:Angeltwo98?subject=I

Recieved this as a Forward) |Recieved this as a fwd! |

|_I need to talk to you gurlies_ (mailto:Angeltwo98,Kattzscratch?subject=I

NEED TO TALK TO YOU) ! | (mailto:Angeltwo98%20?subject= Angel Can We Talk ?)

|Angel I Really Need To Talk |

Any ARTWORK done From AKB is strictly for FUN

Hey, Bush Supporters: Embarrassed Yet?

************************************** See what's free at http://www.aol.com.