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Did you have any physical symptoms?

J

>From: LARancourt@...

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>From: LARancourt@...

>

>Hi everyone, my name is and I have just been reading all of the

>messages

>the last few days, and it is very interesting. I am 32 years old and was

>just diagnosed last week with what my doctor calls Autoimmune Cholangitis.

>I

>haven't seen that discussed by anyone yet, it appears most have Autoimmune

>Hepatitis. It was explained to me that my disease is actually a

>combination

>of AIH, PSC, and PBC.

>My reaction to medications may narrow that down, time will tell. I am

>actually very healthy, the only reason I even found out about this problem

>was because of a blood test for life insurance that showed extremely high

>liver function tests. I hope I am lucky that it may have been caught

>early,

>although I do have liver damage surrounding my bile ducts according to the

>ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok.

>I am taking 30mg of prednisone and will have my blood checked every month

>for

>the first three months to see how my counts respond. I really appreciate

>the

>suggestion that was made to get copies of all the test results and track

>them. Its easy to start that now, and I'm sure it will lead to a better

>understanding in the future, so thanks for the idea.

>If I don't respond to the prednisone as my doctor would like, he will add

>in

>another drug called actigal (sp?).

>I don't know how long it takes for the side effects of pred. to appear, but

>so far so good after 6 days. I actually find that I have not much of an

>appetite, but I think thats because I am determined to do everything I can

>to

>not gain weight! The nutritional advice is great, keep it coming.

>After reading many of the stories of sickness, I feel fortunate that I am

>still feeling healthy, so I am trying my hardest to get in the best and

>healthiest shape of my life. I am eating healthy meals and exercising,

>hoping that it will help in the long run.

>I am just realizing how much there is unknown about liver disease, its

>quite

>alarming. I have no idea what my prognosis is at this point, I guess it

>just

>depends on how quickly the disease progresses through my liver.

>I would be curious to know long many of you have been ill. Its really

>difficult to try and plan to have children when you really don't know how

>long you will be healthy for. I guess you just can't plan your life around

>the disease, and that I am starting to learn.

>

>I would really appreciate any input, thoughts, and advice. And if anyone

>is

>familiar with my diagnosis, I would be real interested to know that too.

>

>Thanks for this opportunity!

>LARancourt@... ()

>

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

[Guest guest]

Hi everyone, my name is and I have just been reading all of the messages

the last few days, and it is very interesting. I am 32 years old and was

just diagnosed last week with what my doctor calls Autoimmune Cholangitis. I

haven't seen that discussed by anyone yet, it appears most have Autoimmune

Hepatitis. It was explained to me that my disease is actually a combination

of AIH, PSC, and PBC.

My reaction to medications may narrow that down, time will tell. I am

actually very healthy, the only reason I even found out about this problem

was because of a blood test for life insurance that showed extremely high

liver function tests. I hope I am lucky that it may have been caught early,

although I do have liver damage surrounding my bile ducts according to the

ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok.

I am taking 30mg of prednisone and will have my blood checked every month for

the first three months to see how my counts respond. I really appreciate the

suggestion that was made to get copies of all the test results and track

them. Its easy to start that now, and I'm sure it will lead to a better

understanding in the future, so thanks for the idea.

If I don't respond to the prednisone as my doctor would like, he will add in

another drug called actigal (sp?).

I don't know how long it takes for the side effects of pred. to appear, but

so far so good after 6 days. I actually find that I have not much of an

appetite, but I think thats because I am determined to do everything I can to

not gain weight! The nutritional advice is great, keep it coming.

After reading many of the stories of sickness, I feel fortunate that I am

still feeling healthy, so I am trying my hardest to get in the best and

healthiest shape of my life. I am eating healthy meals and exercising,

hoping that it will help in the long run.

I am just realizing how much there is unknown about liver disease, its quite

alarming. I have no idea what my prognosis is at this point, I guess it just

depends on how quickly the disease progresses through my liver.

I would be curious to know long many of you have been ill. Its really

difficult to try and plan to have children when you really don't know how

long you will be healthy for. I guess you just can't plan your life around

the disease, and that I am starting to learn.

I would really appreciate any input, thoughts, and advice. And if anyone is

familiar with my diagnosis, I would be real interested to know that too.

Thanks for this opportunity!

LARancourt@... ()

[Guest guest]

Welcome , just jump right in with questions, and someone will come along and

answer them, I am new too and this is a great place to be. Lynn in Wa. AIH

LARancourt@... wrote:

> From: LARancourt@...

>

> Hi everyone, my name is and I have just been reading all of the messages

> the last few days, and it is very interesting. I am 32 years old and was

> just diagnosed last week with what my doctor calls Autoimmune Cholangitis. I

> haven't seen that discussed by anyone yet, it appears most have Autoimmune

> Hepatitis. It was explained to me that my disease is actually a combination

> of AIH, PSC, and PBC.

> My reaction to medications may narrow that down, time will tell. I am

> actually very healthy, the only reason I even found out about this problem

> was because of a blood test for life insurance that showed extremely high

> liver function tests. I hope I am lucky that it may have been caught early,

> although I do have liver damage surrounding my bile ducts according to the

> ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok.

> I am taking 30mg of prednisone and will have my blood checked every month for

> the first three months to see how my counts respond. I really appreciate the

> suggestion that was made to get copies of all the test results and track

> them. Its easy to start that now, and I'm sure it will lead to a better

> understanding in the future, so thanks for the idea.

> If I don't respond to the prednisone as my doctor would like, he will add in

> another drug called actigal (sp?).

> I don't know how long it takes for the side effects of pred. to appear, but

> so far so good after 6 days. I actually find that I have not much of an

> appetite, but I think thats because I am determined to do everything I can to

> not gain weight! The nutritional advice is great, keep it coming.

> After reading many of the stories of sickness, I feel fortunate that I am

> still feeling healthy, so I am trying my hardest to get in the best and

> healthiest shape of my life. I am eating healthy meals and exercising,

> hoping that it will help in the long run.

> I am just realizing how much there is unknown about liver disease, its quite

> alarming. I have no idea what my prognosis is at this point, I guess it just

> depends on how quickly the disease progresses through my liver.

> I would be curious to know long many of you have been ill. Its really

> difficult to try and plan to have children when you really don't know how

> long you will be healthy for. I guess you just can't plan your life around

> the disease, and that I am starting to learn.

>

> I would really appreciate any input, thoughts, and advice. And if anyone is

> familiar with my diagnosis, I would be real interested to know that too.

>

> Thanks for this opportunity!

> LARancourt@... ()

>

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

[Guest guest]

Hi ,

Welcome to the list!

Your E-mail really interested me as I have never heard

of Autoimmune cholangitis. I did a little research and

found the following info which i hope you will find

useful:-

Autoimmune cholangitis (AC) is a recently proposed

entity that describes a specific group of patients

presenting overlapping features of primary biliary

cirrhosis (PBC) and autoimmune hepatitis. The disease

is characterized by dinical cholestasis, high titer

antinuclear antibody, negative antimitochondrial

antibody, and histologically, findings of PBC

coexisting with varying degrees of parenchymal

inflammation.

Would you mind telling me a little about your

situation, such as which doctor diagnosed you, what

your symptoms and diagnostics are, etc.

Thanks,

And again, welcome,

Elena

--- LARancourt@... wrote:

> From: LARancourt@...

>

> Hi everyone, my name is and I have just been

> reading all of the messages

> the last few days, and it is very interesting. I am

> 32 years old and was

> just diagnosed last week with what my doctor calls

> Autoimmune Cholangitis. I

> haven't seen that discussed by anyone yet, it

> appears most have Autoimmune

> Hepatitis. It was explained to me that my disease

> is actually a combination

> of AIH, PSC, and PBC.

> My reaction to medications may narrow that down,

> time will tell. I am

> actually very healthy, the only reason I even found

> out about this problem

> was because of a blood test for life insurance that

> showed extremely high

> liver function tests. I hope I am lucky that it may

> have been caught early,

> although I do have liver damage surrounding my bile

> ducts according to the

> ultrasound and liver biopsy. My ERCP showed that my

> bile ducts are ok.

> I am taking 30mg of prednisone and will have my

> blood checked every month for

> the first three months to see how my counts respond.

> I really appreciate the

> suggestion that was made to get copies of all the

> test results and track

> them. Its easy to start that now, and I'm sure it

> will lead to a better

> understanding in the future, so thanks for the idea.

> If I don't respond to the prednisone as my doctor

> would like, he will add in

> another drug called actigal (sp?).

> I don't know how long it takes for the side effects

> of pred. to appear, but

> so far so good after 6 days. I actually find that I

> have not much of an

> appetite, but I think thats because I am determined

> to do everything I can to

> not gain weight! The nutritional advice is great,

> keep it coming.

> After reading many of the stories of sickness, I

> feel fortunate that I am

> still feeling healthy, so I am trying my hardest to

> get in the best and

> healthiest shape of my life. I am eating healthy

> meals and exercising,

> hoping that it will help in the long run.

> I am just realizing how much there is unknown about

> liver disease, its quite

> alarming. I have no idea what my prognosis is at

> this point, I guess it just

> depends on how quickly the disease progresses

> through my liver.

> I would be curious to know long many of you have

> been ill. Its really

> difficult to try and plan to have children when you

> really don't know how

> long you will be healthy for. I guess you just

> can't plan your life around

> the disease, and that I am starting to learn.

>

> I would really appreciate any input, thoughts, and

> advice. And if anyone is

> familiar with my diagnosis, I would be real

> interested to know that too.

>

> Thanks for this opportunity!

> LARancourt@... ()

>

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

[Guest guest]

Hello again ,

I just found some more info which you may find

interesting.

The term cholangitis or autoimmune cholangiopathy is

applied to patients with a disease similar to primary

biliary cirrhosis because of its clinical and

histologic characteristics but in whom there is a

repeated absence of antimitochondrial antibodies and,

by the contrary, the presence of antinuclear

antibodies. The initial description of these cases was

carried out in 1987. Good response was observed to

treatment with glucocorticoids in these first cases

and others described later. A series of 13 female

patients with features of autoimmune cholangitis

diagnosed from 1987 to 1993 in the Hospital Clinic i

Provincial from Barcelona, Spain, is retrospectively

reviewed. These patients were compared with 13

patients with primary biliary cirrhosis diagnosed on

the basis of clinical and histologic criteria and the

presence of antimitochondrial antibodies. No relevant

clinical or histological differences were observed

between the two groups of patients. Six patients with

autoimmune cholangitis underwent treatment with

glucocorticoids with unequal response, and in 5 cases

ursodeoxycholic acid was administered with a slight

analytical improvement being observed. According to

these results and the current data of these patients,

autoimmune cholangitis should be considered as a

variety of primary biliary cirrhosis, the main

characteristic of which would be the absence of

antimitochondrial antibodies more than that of being a

specific, independent disease.

Hope it helps

Elena

===

Elena AIH

San Diego, CA

[Guest guest]

Gut 1997; 40: 440–442 440

Leading article

Autoimmune cholangitis

Autoimmune cholangitis is a term that has only

recently

appeared on the hepatology horizon and it may be best

if

the term were to be abandoned as its use has given

rise

to considerable confusion. Clearly the name infers

inflam-mation

of the bile ducts thought to be due to an auto-immune

process. Primary biliary cirrhosis, primary

sclerosing cholangitis, and graft versus host disease

are all

diseases of the bile ducts in which the pathogenesis

is

considered immune (often autoimmune) based. It is also

possible that some drugs induce an immune mediated

bile

duct destruction and it has been postulated that

viruses

may do likewise.

The name “immune cholangitis” was introduced first by

Brunner et al 1 to describe a condition seen in three

women

(two were mother and daughter) who had liver disease

which clinically, biochemically, and histologically

seemed

to be typical of primary biliary cirrhosis, except

that the

serum antimitochondrial antibody (AMA) test was

nega-tive

in all three; all three were antinuclear antibody

(ANA)

positive. Examinations of the bile ducts via

endoscopic

retrograde cholangiopancreatography (ERCP) disclosed

no abnormalities. Treatment with prednisolone and

aza-thioprine

was said to be “successful”.

The non-organ, non-species specific mitochondrial

anti-body

was first recognised as a hallmark for primary biliary

cirrhosis in 1965 by et al.2 Over time it has

become

recognised that the inciting antigen(s) are located on

the

inner part of the mitochondrial membrane. The specific

antigens have been further defined using western

immuno-blotting

techniques as being the 74 kDa E2 subunit of the

pyruvate dehydrogenase complex (PDC-E2), the 52 kDa

protein X, the 50 kDa branched chain 2-oxo-acid

dehydrogenase complex (BCOADC-E2), the 48 kDa

(2-oxoglutamate dehydrogenase complex (OGDC-E2),

and the 41kDa E1a subunit PDC. However, most

labora-tories

still use the standard immunofluorescence tech-nique,

which allows for single sample testing. Multiple

samples are most easily tested with an enzyme linked

immunosorbent assay (ELISA) using recombinant or

purified antigens. The specificity of these tests has

been

assessed in healthy controls by Omagari et al,3 the

sensitiv-ity

of immunoblotting by Mutimer et al,4 and ELISA by

Fussey et al.5

After the report of Brunner et al,1 Ben-Ari et al 6

described four more patients who seemed to have all

the

usual features of primary biliary cirrhosis but who

also

tested AMA negative even when using the sensitive

immunoblotting method. These authors described their

patients as having an autoimmune cholangiopathy

because

serum ANA and smooth muscle antibody (SMA) proved

positive in all four cases. These patients were also

treated

with prednisolone with or without azathioprine and

were

shown to have at least short term biochemical and

histo-logical

improvement (although there was no change in bile

duct damage).

Once immunoflourescence testing for AMA detection

was first introduced it was noted that about 5%–8% of

patients with features otherwise typical of primary

biliary

cirrhosis tested negative.7 It was also noted in the

early days

of AMA testing that AMA was sometimes detected in the

serum of patients with other forms of autoimmune liver

disease.8 Similarly, the autoantibodies most commonly

associated with autoimmune hepatitis – namely, ANA and

SMA – were found in some patients who were AMA

positive but who were otherwise thought from all the

usual

perspectives to have primary biliary cirrhosis.9 Now

that

primary sclerosing cholangitis can be diagnosed with

absolute confidence via ERCP it has become recognised

that these same non-organ, non-species specific

auto-antibodies

ANA and SMA are found in the serum of some

patients with proven primary sclerosing cholangitis.10

Hence, confusion as to the exact diagnosis in some

cases

of presumed autoimmune liver disease is an old

problem.

In 1976 Geubel et al 11 suggested that a three month

trial

of prednisolone therapy may help to distinguish

auto-immune

hepatitis from primary biliary cirrhosis in those

patients who had features of both diseases.

The development of the highly sensitive and specific

immunoblotting tests for AMA in the late 1980s might

have been anticipated to clarify the definition of

otherwise

confusing cases of autoimmune liver disease. Thus we

submitted serum samples from patients thought by all

other criteria to have primary biliary cirrhosis (but

who had

been rejected from a therapeutic trial because their

serum

AMA tested negative by immunofluorescence), for AMA

testing by immunoblotting. Seventeen of these 20

patients

proved still to be AMA negative using this test.12 The

clinical, biochemical, serological, and histological

charac-teristics

of these AMA negative cases were compared with

AMA positive cases referred to the same therapeutic

trial,

matched for concentration of serum bilirubin. Certain

other features distinguished the AMA positive and

negative

cases: the serum IgM concentrations were significantly

lower in the AMA negative patients, and all had serum

positive for ANA (often at high titres (1:160–1:1280))

whereas only three of the AMA positive patients were

ANA

positive. Similarly, more of the AMA negative cases

were

also SMA positive (seven of 17) compared with the AMA

positive cases (one of 17). Aside from the ANA tests

and

IgM concentrations, these AMA positive and negative

patients could not be distinguished. Their symptoms

were

comparable, the prevalence of other autoimmune

diseases

was no different, and their liver histology on needle

biopsy

(read by two independent pathologists blinded to AMA

status) was indistinguishable. We coined the phrase

“auto-immune

cholangitis” to describe what is likely simply AMA

negative primary biliary cirrhosis.

Several other centres have reported similar cases:

et al 13 described nine cases, and Lacerda et al 14 a

further

35. Both et al 13 and Michieletti et al 12

performed

serial testing for AMA by immunoblotting over several

years. In all but one patient the AMA tests remained

consistently negative. The Mayo group 14 also noted

lower

IgM concentrations in their patients and et al

13 and

Leading articles express the views of the author and

not those of the editor and editorial board.

--- LARancourt@... wrote:

> From: LARancourt@...

>

> Hi everyone, my name is and I have just been

> reading all of the messages

> the last few days, and it is very interesting. I am

> 32 years old and was

> just diagnosed last week with what my doctor calls

> Autoimmune Cholangitis. I

> haven't seen that discussed by anyone yet, it

> appears most have Autoimmune

> Hepatitis. It was explained to me that my disease

> is actually a combination

> of AIH, PSC, and PBC.

> My reaction to medications may narrow that down,

> time will tell. I am

> actually very healthy, the only reason I even found

> out about this problem

> was because of a blood test for life insurance that

> showed extremely high

> liver function tests. I hope I am lucky that it may

> have been caught early,

> although I do have liver damage surrounding my bile

> ducts according to the

> ultrasound and liver biopsy. My ERCP showed that my

> bile ducts are ok.

> I am taking 30mg of prednisone and will have my

> blood checked every month for

> the first three months to see how my counts respond.

> I really appreciate the

> suggestion that was made to get copies of all the

> test results and track

> them. Its easy to start that now, and I'm sure it

> will lead to a better

> understanding in the future, so thanks for the idea.

> If I don't respond to the prednisone as my doctor

> would like, he will add in

> another drug called actigal (sp?).

> I don't know how long it takes for the side effects

> of pred. to appear, but

> so far so good after 6 days. I actually find that I

> have not much of an

> appetite, but I think thats because I am determined

> to do everything I can to

> not gain weight! The nutritional advice is great,

> keep it coming.

> After reading many of the stories of sickness, I

> feel fortunate that I am

> still feeling healthy, so I am trying my hardest to

> get in the best and

> healthiest shape of my life. I am eating healthy

> meals and exercising,

> hoping that it will help in the long run.

> I am just realizing how much there is unknown about

> liver disease, its quite

> alarming. I have no idea what my prognosis is at

> this point, I guess it just

> depends on how quickly the disease progresses

> through my liver.

> I would be curious to know long many of you have

> been ill. Its really

> difficult to try and plan to have children when you

> really don't know how

> long you will be healthy for. I guess you just

> can't plan your life around

> the disease, and that I am starting to learn.

>

> I would really appreciate any input, thoughts, and

> advice. And if anyone is

> familiar with my diagnosis, I would be real

> interested to know that too.

>

> Thanks for this opportunity!

> LARancourt@... ()

>

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

[Guest guest]

----------

>,

Welcome. I think we all understand about how family and friends treat you.

You look fine, so you ARE fine. Underneath lies the real truth. It is great

therapy to be able to just get on the computer and tell other people just

how " bad " or " Good " you feel on a particular day and they fully understand.

One day at a time, that is the key. It is the only way to go on. This

disease has bought us all together and that IS a positive from a negative

situation. Glad you found us.

SueB.

[Guest guest]

Welcome , sorry you have this awful stuff too, but this is a good place to

come to. Lynn in Washington AIH

nancy@... wrote:

> From: nancy@...

>

> Hello! I signed on yesterday, and I am very glad to find a support group. I

have autoimmune hepatitis and have been taking Prednisone and azathioprine for a

year now. My latest test results were good and I have started to reduce the

Prednisone, going down from 10 mg/day, hoping to achieve 5 mg/day. I did this

once before, this spring, and my fatigue symptoms returned. This time it will

be a slower reduction. Anyway, I live by myself. My family and friends are

helpful and supportive and not really able to understand about my health

situation. I had just retired, from my school bus driving job, last year when I

learned about my AIH. I get to stay home and live quietly and stress free in my

cabin in the country, in Oregon. What an adventure! Each day is a gift.

>

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

[Guest guest]

Sue B. and Lynn,

Thank you for your kind welcome. Sue, you are right about how healthy I look.

My round moonface cheeks are rosy and my eyes are bright. Now I understand why

some people think I am being a slacker because I 'm not bustling around finding

a part time job. Right now I am feeling lucky because I have no

responsibilities except for myself, and no schedule to follow.

It was a lovely early autumn day here, warm enough to go barefoot.

Regards to all, _^..^_

milko wrote:

> From: " milko " <milko@...>

>

> ----------

> >,

> Welcome. I think we all understand about how family and friends treat you.

> You look fine, so you ARE fine. Underneath lies the real truth. It is great

> therapy to be able to just get on the computer and tell other people just

> how " bad " or " Good " you feel on a particular day and they fully understand.

> One day at a time, that is the key. It is the only way to go on. This

> disease has bought us all together and that IS a positive from a negative

> situation. Glad you found us.

> SueB.

>

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

[Guest guest]

Welcome !!

Can I come live with you??? LOL Glad to have you here!!

(AIH)

[Guest guest]

----------

>,

Lovely day here too.

Remember it is important that you keep your stress levels down. So if

anyone or anything upsets you jump onto that computer and share. A problem

shared is a problem halved.

It is Spring here. Lovely day today too.

Have a great weekend.

SueB.

[Guest guest]

Hi Sue B.,

Thanks for the good advice. I have always internalized stress, appear placid

and serene while churning inside. I have wondered if that hasn't done a lot

to contribute to my being AIH. The stress level in my life now is very low.

My biggest problem today was whether to wash the dishes or wait until tomorrow

to do them. If I do get some real stressful situation I will fling it here

and watch while everyone shreds it up for me.

I was thinking of you being in 'the land down under' and how spring must be

starting there. You are seeing the natural world waking up and budding, and I

am starting fires in the wood stove to warm the house on cooler nights and

watching leaves start to fall. The days are still sunny and beautiful but

that will change because I live in a rainforest.

Take care, _^..^_

milko wrote:

> From: " milko " <milko@...>

>

> ----------

> >,

> Lovely day here too.

> Remember it is important that you keep your stress levels down. So if

> anyone or anything upsets you jump onto that computer and share. A problem

> shared is a problem halved.

> It is Spring here. Lovely day today too.

> Have a great weekend.

> SueB.

>

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

[Guest guest]

Hi ,

Yes, it does seem like you need a change of scene after your encounters with

all that medical rudeness! That psychiatrist needs counseling himself.

Bring your umbrella. Last winter I started calling myself Mossytoes.

Thanks for your welcoming message.

Take good care, _^..^_

La7de@... wrote:

> From: La7de@...

>

> Welcome !!

>

> Can I come live with you??? LOL Glad to have you here!!

>

> (AIH)

>

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

[Guest guest]

, where are you from? What rain forest? Lynn aih

Wheeler wrote:

> From: Wheeler <nancy@...>

>

> Hi Sue B.,

>

> Thanks for the good advice. I have always internalized stress, appear placid

> and serene while churning inside. I have wondered if that hasn't done a lot

> to contribute to my being AIH. The stress level in my life now is very low.

> My biggest problem today was whether to wash the dishes or wait until tomorrow

> to do them. If I do get some real stressful situation I will fling it here

> and watch while everyone shreds it up for me.

>

> I was thinking of you being in 'the land down under' and how spring must be

> starting there. You are seeing the natural world waking up and budding, and I

> am starting fires in the wood stove to warm the house on cooler nights and

> watching leaves start to fall. The days are still sunny and beautiful but

> that will change because I live in a rainforest.

>

> Take care, _^..^_

>

> milko wrote:

>

> > From: " milko " <milko@...>

> >

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

> > >,

> > Lovely day here too.

> > Remember it is important that you keep your stress levels down. So if

> > anyone or anything upsets you jump onto that computer and share. A problem

> > shared is a problem halved.

> > It is Spring here. Lovely day today too.

> > Have a great weekend.

> > SueB.

> >

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

[Guest guest]

,

Welcome!!! We are glad to have you here. You sound like you used to be like

me, internalizing stress. How on earth did you stop? I'd also vote to do

the dishes tomorrow! Take care.

(AIH)

Florida

[Guest guest]

,

I don't think I have stopped internalizing stress, I think what I have been

trying to do is to avoid stress by getting my life simplified. I guess some of

that involves learning to say 'no' when someone asks me to participate in

something that probably will be stressful. I'm also trying to pace myself and

not get overtired.

Still didn't do the dishes! : )

Regards, _^..^_

La7de@... wrote:

> From: La7de@...

>

> ,

> Welcome!!! We are glad to have you here. You sound like you used to be like

> me, internalizing stress. How on earth did you stop? I'd also vote to do

> the dishes tomorrow! Take care.

>

> (AIH)

> Florida

>

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

[Guest guest]

Lynn

I live in Oregon, near the coast. We get lots of rain. It is the dry season

right

now, there is sunshine and stars even. You live in Washington? I've been to

Vancouver and to Mt. St. Helens.

_^..^_

Lynn wrote:

> From: Lynn <CEN32195@...>

>

> , where are you from? What rain forest? Lynn aih

>

> Wheeler wrote:

>

> > From: Wheeler <nancy@...>

> >

> > Hi Sue B.,

> >

> > Thanks for the good advice. I have always internalized stress, appear

placid

> > and serene while churning inside. I have wondered if that hasn't done a lot

> > to contribute to my being AIH. The stress level in my life now is very low.

> > My biggest problem today was whether to wash the dishes or wait until

tomorrow

> > to do them. If I do get some real stressful situation I will fling it here

> > and watch while everyone shreds it up for me.

> >

> > I was thinking of you being in 'the land down under' and how spring must be

> > starting there. You are seeing the natural world waking up and budding, and

I

> > am starting fires in the wood stove to warm the house on cooler nights and

> > watching leaves start to fall. The days are still sunny and beautiful but

> > that will change because I live in a rainforest.

> >

> > Take care, _^..^_

> >

> > milko wrote:

> >

> > > From: " milko " <milko@...>

> > >

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

> > > >,

> > > Lovely day here too.

> > > Remember it is important that you keep your stress levels down. So if

> > > anyone or anything upsets you jump onto that computer and share. A problem

> > > shared is a problem halved.

> > > It is Spring here. Lovely day today too.

> > > Have a great weekend.

> > > SueB.

> > >

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

[Guest guest]

, we are about 2 hours from Portland. Lynn

Wheeler wrote:

> From: Wheeler <nancy@...>

>

> Lynn

>

> I live in Oregon, near the coast. We get lots of rain. It is the dry season

right

> now, there is sunshine and stars even. You live in Washington? I've been to

> Vancouver and to Mt. St. Helens.

>

> _^..^_

>

> Lynn wrote:

>

> > From: Lynn <CEN32195@...>

> >

> > , where are you from? What rain forest? Lynn aih

> >

> > Wheeler wrote:

> >

> > > From: Wheeler <nancy@...>

> > >

> > > Hi Sue B.,

> > >

> > > Thanks for the good advice. I have always internalized stress, appear

placid

> > > and serene while churning inside. I have wondered if that hasn't done a

lot

> > > to contribute to my being AIH. The stress level in my life now is very

low.

> > > My biggest problem today was whether to wash the dishes or wait until

tomorrow

> > > to do them. If I do get some real stressful situation I will fling it

here

> > > and watch while everyone shreds it up for me.

> > >

> > > I was thinking of you being in 'the land down under' and how spring must

be

> > > starting there. You are seeing the natural world waking up and budding,

and I

> > > am starting fires in the wood stove to warm the house on cooler nights and

> > > watching leaves start to fall. The days are still sunny and beautiful but

> > > that will change because I live in a rainforest.

> > >

> > > Take care, _^..^_

> > >

> > > milko wrote:

> > >

> > > > From: " milko " <milko@...>

> > > >

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

> > > > >,

> > > > Lovely day here too.

> > > > Remember it is important that you keep your stress levels down. So if

> > > > anyone or anything upsets you jump onto that computer and share. A

problem

> > > > shared is a problem halved.

> > > > It is Spring here. Lovely day today too.

> > > > Have a great weekend.

> > > > SueB.

> > > >

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

[Guest guest]

----------

>,

Your fire sounds great. I personally (since I have put on so much weight

from the pred) cope better with the colder months. I find it hard to cope

with the heat. Today was beautiful, weather wise.

It is Fathers Day here today. Saw all our kids. It was nice.

This day could last right through Summer and I would be happy, it is very

tolerable.

You have a great week.

SueB.

[Guest guest]

I love hot weather, but I do not do well in the heat or the sun any more. Is

this liver related? Lynn I know my diuretic, I am not supposed to be

in the sun, because it retards its ability to work properly.

milko wrote:

> From: " milko " <milko@...>

>

> ----------

> >,

> Your fire sounds great. I personally (since I have put on so much weight

> from the pred) cope better with the colder months. I find it hard to cope

> with the heat. Today was beautiful, weather wise.

> It is Fathers Day here today. Saw all our kids. It was nice.

> This day could last right through Summer and I would be happy, it is very

> tolerable.

> You have a great week.

> SueB.

>

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

[Guest guest]

Lynn,

I have read that taking prednisone definitely causes intolerance to sun, and

somewhere in my reading (I've read soooo much lately, I can't remember

where), I read that autoimmune diseases do also.

My girlfriend was here from Boston in January, and she wanted to get a head

start on here tan, so we went to a tanning booth. We used to do that alot 4

years ago when she lived here. I had 10 min in the booth, and I got such a

burn that I was in alot of pain. Not regular sunburn pain (I've lived in

Fla. for 30 years, and am olive complected), but this pain was so " deep " that

I had to go see an MD. He gave me prednisone. This was pre-diagnosis, so at

the time I attributed it to being on hormones, since that was the only

different medication I was taking. I'm not sure what caused it for sure, but

I will certainly never go in a tanning booth again, and I also don't intend

to lay out in the sun. Don't know if it's related, but thought I'd mention

it just in case...

(AIH)

Florida

[Guest guest]

I think you are right. I just can't be in the sun anymore, thanks for the info

too. Lynn aih

La7de@... wrote:

> From: La7de@...

>

> Lynn,

>

> I have read that taking prednisone definitely causes intolerance to sun, and

> somewhere in my reading (I've read soooo much lately, I can't remember

> where), I read that autoimmune diseases do also.

>

> My girlfriend was here from Boston in January, and she wanted to get a head

> start on here tan, so we went to a tanning booth. We used to do that alot 4

> years ago when she lived here. I had 10 min in the booth, and I got such a

> burn that I was in alot of pain. Not regular sunburn pain (I've lived in

> Fla. for 30 years, and am olive complected), but this pain was so " deep " that

> I had to go see an MD. He gave me prednisone. This was pre-diagnosis, so at

> the time I attributed it to being on hormones, since that was the only

> different medication I was taking. I'm not sure what caused it for sure, but

> I will certainly never go in a tanning booth again, and I also don't intend

> to lay out in the sun. Don't know if it's related, but thought I'd mention

> it just in case...

>

> (AIH)

> Florida

>

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

[Guest guest]

,

My doctors have speculated that I've had autoimmune reactions for about 20

years. I began having abnormal things happen in the late 1970's and one of the

first was sun sensitivity. I have fair complexion but I've never had a problem

with easy sunburns. Virtually overnight, I developed sun sensitivity and I

thought it was caused by a change in hormones. My doctor said absolutely not.

Even exposure to the sun on my arm through a car window would cause a rash and

my skin became so sensitive that a hot shower would trigger a rash, or a brush

on my cheeks when applying blush, or even my hubby's whiskers on my face.

Before that I'd never been allergic to anything or had even a minor skin

problem.

I believe that aside from sun sensitivity, anti-organ rejection drugs like

Imuran make us susceptible to skin cancers. I was told from the start to

avoid sun exposure, though I'd already been avoiding it for years. In addition

to rashes, I become very ill when I'm too warm and I can't tolerate being in a

room without air conditioning during summer months. This seems to be a problem

that many of us share. Coincidentally or not, I was hospitalized a couple of

weeks after we'd spent a couple of days with my in-laws, who live in Palm

Springs. They're elderly and they turn the AC off at night without regard to

how hot it is. I woke up in the middle of the first night deathly sick and

with abdominal pain. After cooling off (my husband located to thermostat and

turned the AC back on) I began to feel okay again. It could be that my

metabolism was already messed up and couldn't handle the extra stress, but it's

probably not a bad idea to avoid sun and too much heat now that we know that we

have an autoimmune disease.

Take care,

Geri

[Guest guest]

Lynn,

I am 28 years old. (and just about ready to start off the rest of my life!!!)

Remember " Even the impossible is easy cause we got each other. One day we're

gonna get so high!!! "

Peace

[Guest guest]

Welcome , hope to hear more from you. How old are you? Lynn aih

Rentluv2@... wrote:

> From: Rentluv2@...

>

> Hello all,

>

> I am a new to the list. My name is and I was diagnosed in 1990 with

> AIH and have lived a relatively normal life since then - up until last year.

> In Jan 1998 I was admitted to the hospital because of ascities and fluid was

> drained from me. Then another year went by and in Feb 1999 developed an

> internal infection due to a ruptured varicies in my esophagus that caused me

> to develop encephalopathy and lapse into a coma for 5 days and it was very

> touchy for several days. (I had passed out at home, by myself, after feeling

> ill and leaving work sick. I just thought it's February in Cleveland and I

> probably have the flu.) Let me tell you, coming out of that was one of the

> weirdest experiences ever! Since then I have been evaluated at the Cleveland

> Clinic Transplant Center and since been placed on the transplant list at a

> very low priority. My doctors, a team of wonderful gastroenterologists at

> Metro Health Medical Center, hope to keep me at that low priority for a long

> time since I have responded so well to treatment in the past. I am currently

> on a regimen of prednisone, imuran, inderal (for the varicies), lasix, and

> aldactone. Keeping the meds straight is a job but I know this is only the

> beginning of a long course.

>

> Well that's my story in 100 words or less. LOL. If anyone has any advice or

> news that they feel can help or steer me in the right direction please feel

> free to email me directly also at Rentluv2@....

>

> Thanks and good luck to everyone!!!

>

>

>

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