Re: Poll-onset of symptoms...

[Guest guest]

shorton@... wrote:

>

> In relation to your dx when did you first have symptoms.

I had major symptoms for a few months before my diagnosis, then the

morning of my first ERCP I woke up with no symptoms. After that I had

only very minor symptoms for quite few years (7 or 8), and it's only

been in the last 2-3 years that symptoms have started to get worse

again. They still aren't as bad in a lot of ways as they were right at

first. Of course those symptoms were caused by blockage of the bile

ducts, and these are caused by actual liver damage, so these are

actually more serious in a way.

athan

[Guest guest]

Jen,

I was diagnosed in January 1988. At that time my symptoms were fatigue

and mild URQ pain. At that point, my LFTs were normal. After over 13

years, my LFTs have become abnormal, but my only symptoms are still only

the mild (sometimes severe) fatigue and occasional bout of URQ pain. I

have had a little itching, but nothing like what some of the members

have described and it usually only lasts a day. I have learned not to

worry about it and take each day as it comes. I used to think about how

long it was going to be until things would start downhill, but now I

just try to live life to its fullest and cram as much into it as I can,

while I can. I really fully intend to die from old age with all my

original equipment.

Carol

Poll-onset of symptoms...

In relation to your dx when did you first have symptoms. Also, is it

something that starts gradually or just overnight you are itching all

over? I guess I am just freaked out about the thought of is this the

day that PSC will begin for me as I am symptom free at the moment.

Wow, I was doing so well with it! What is up with the change in my

outlook over the past couple of days!

Jen

[Guest guest]

In relation to your dx when did you first have symptoms.

My symptoms started five years prior to my diagnosis. Fatigue in 1996

then pain between the shoulder blades in 1999 along with severe

gastric reflux. I was diagnosed in Jan 2001.

I was first told by my doctor that I had 12 years to transplant. My

brother later called him and they talked for about an hour and he

finally broke down and told him I had between 3-6 years to

transplant. I expected that. I feel OK. It gets easier to deal with

as time goes on. I have my bases covered as far as my health care and

I have a good hepatolagist who cares about me.

Andi

[Guest guest]

Jen it is perfectly normal to have setbacks with your

mental outlook...afterall PSC has the potential to rob

you of not only your health, but your mental health

before it hits you physically.

I was dx with PSC in Aug of 1997 due to routine blood

tests. My first real symptom was May 2000. I was

caring for my father who was dying. I became very

fatigued and didn't think anything of it, afterall I

was running myself down. My stools became pale and I

didn't suspect anything because I had just recently

had my colon removed and a jpouch installed (2 months

earlier), but when I started itching..........whoa

baby. The itching started sporatically in different

parts of my body, and brief scratching satisfied it,

but then it was more and more frequent and more

severe. Then over the course of 3 days it was

intensified especially at night and on my feet and

hands where they are caloused and I could not get

enough power to scratch into the deep level it

appeared to be coming from. I would use the prongs on

my wedding rings to scrape my feet causing gashes. So

when the holiday weekend, Memorial Day was over, a

call to my GI questioning what may be happening

because I remembered reading about puritis and PSC, he

reluctantly did a blood test, and then immediately

hospitalized me and did another ERCP, which again

concluded PSC. I was then placed on ACtigall.

This was just over a year ago, and at first I thought

about and obsessed with trying to get control of PSC.

Now, after knowing these fine people here, I don't

obsess about it, and I do what I need to do. When I

feel fatigued, I stop and rest. when I itch I go to

the tanner, take Questran, Atarax or whatever is

necessary to reduce the itching.

For me, being in what I believe the early stages,

itching is the utmost annoying symptom I have. I can

handle fatigue by resting....but the itching......

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

[Guest guest]

I've had off and on itching for about 3 years --

thought it was some kind of athlete's foot. only after

the Dx did I put it all together. the URQ pain comes

and goes. The fatigue is hard to say -- I thought I

was tired b/c of UC. never understood why I didn't

seem to get over it after my last UC flare. And the

LFTs have been elevated off and on for 10 years.

Colleen

__________________________________________________

[Guest guest]

I never really noticed the fatigue with UC unless I lost a lot of blood and

my red blood count went down. I can have flare ups, still do, without

presence of blood. My feet used to itch, I knew it wasn't athletes foot

but the over the counter medicine helped. I think the Rifampin helps that.

Now it just my hands, forearms, chest - stomach, lower back and my calves.

I fight excema (?), dry skin condition, which I am sure doesn't help

matters. Cortaid (1% cortisone) helps the most but is too expensive to

continually apply. I have found it does not leave the greasy feeling that

other lotions or topicals do and absorbs quickly. I think my hands get

more irritated just from routine or daily activities.

Question: Do you get small blisters when you scratch or overly irritate

your skin? I went to a dermatologist when I was first diagnosed to see if

I was allergic to the medication. They said it was the blisters were

common with chemical reaction. However, may be it is the surface of the

skin reacting with the bile.

Darin

Colleen

Garvey To:

<thegarvster@ cc:

yahoo.com> Subject: Re:

Poll-onset of symptoms...

09/05/2001

02:02 PM

Please

respond to

I've had off and on itching for about 3 years --

thought it was some kind of athlete's foot. only after

the Dx did I put it all together. the URQ pain comes

and goes. The fatigue is hard to say -- I thought I

was tired b/c of UC. never understood why I didn't

seem to get over it after my last UC flare. And the

LFTs have been elevated off and on for 10 years.

Colleen

__________________________________________________

[Guest guest]

I don't have a problem with blisters -- my itching

seems to be mainly in my feet -- I get a little itchy

all over, but slathering lotion on my seems to take

care of that for now. The feet are itch-free these

days thanks to the Enbrel. I will have to go off of it

in a few months -- I am so dreading that. It has been

wonderful to not itch and be able to sleep really

well.

Colleen

--- dpittman@... wrote:

> Question: Do you get small blisters when you

> scratch or overly irritate

> your skin? I went to a dermatologist when I was

> first diagnosed to see if

> I was allergic to the medication. They said it was

> the blisters were

> common with chemical reaction. However, may be it

> is the surface of the

> skin reacting with the bile.

>

> Darin

>

>

>

>

>

> Colleen

>

>

> Garvey To:

>

>

> <thegarvster@ cc:

>

>

> yahoo.com> Subject:

> Re: Poll-onset of symptoms...

>

>

>

>

> 09/05/2001

>

>

> 02:02 PM

>

>

> Please

>

>

> respond to

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I've had off and on itching for about 3 years --

> thought it was some kind of athlete's foot. only

> after

> the Dx did I put it all together. the URQ pain comes

> and goes. The fatigue is hard to say -- I thought I

> was tired b/c of UC. never understood why I didn't

> seem to get over it after my last UC flare. And the

> LFTs have been elevated off and on for 10 years.

>

> Colleen

>

>

> __________________________________________________

>

[Guest guest]

Since you have to go off the Embrel, try Tenactin (spelling) or some other

over the counter athletes foot medication. The medicated pads are the

easiest to handle and deal with. It helped me a lot before I started

tanking Rifampin (no occurrence now). Absorbine Jr. does not work - a

bottle in two days will attest to that.

Darin

Colleen

Garvey To:

<thegarvster@ cc:

yahoo.com> Subject: Re:

Poll-onset of symptoms...

09/06/2001

09:55 AM

Please

respond to

I don't have a problem with blisters -- my itching

seems to be mainly in my feet -- I get a little itchy

all over, but slathering lotion on my seems to take

care of that for now. The feet are itch-free these

days thanks to the Enbrel. I will have to go off of it

in a few months -- I am so dreading that. It has been

wonderful to not itch and be able to sleep really

well.

Colleen

--- dpittman@... wrote:

> Question: Do you get small blisters when you

> scratch or overly irritate

> your skin? I went to a dermatologist when I was

> first diagnosed to see if

> I was allergic to the medication. They said it was

> the blisters were

> common with chemical reaction. However, may be it

> is the surface of the

> skin reacting with the bile.

>

> Darin

>

>

>

>

>

> Colleen

>

>

> Garvey To:

>

>

> <thegarvster@ cc:

>

>

> yahoo.com> Subject:

> Re: Poll-onset of symptoms...

>

>

>

>

> 09/05/2001

>

>

> 02:02 PM

>

>

> Please

>

>

> respond to

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I've had off and on itching for about 3 years --

> thought it was some kind of athlete's foot. only

> after

> the Dx did I put it all together. the URQ pain comes

> and goes. The fatigue is hard to say -- I thought I

> was tired b/c of UC. never understood why I didn't

> seem to get over it after my last UC flare. And the

> LFTs have been elevated off and on for 10 years.

>

> Colleen

>

>

> __________________________________________________

>