Re: How often should blood be monitored?

[Guest guest]

In the beginning mine were once yearly, now they are every three months but

that's by my PCP, My hepatologist says every 6 months.

My understanding is that they don't need to be monitored frequently until you

reach the more advanced stages of the disease.

Sorry I can't give a better answer

Dawn

>

> My son was diagnosed with PSC last April and our family is devastated. He is

25 yrs old now and because he is an adult, we worry that he is not getting

properly monitored. When he was first diagnosed, they were monitoring his blood

every few weeks and now he hasn't been monitored for 4 months. Can anyone tell

me how often the blood work should be done?

>

[Guest guest]

Hello,

I wanted to let you know that my labs are done every 6 months and they have been

pretty good until recently. If I am having issues though my doc doesn't them at

that time. I guess it may depend on the doctor and how the disease is doing.

The only thing I suggest is that your son be prepared prior to going to the doc

with all his and/or your questions and make sure he doesn't leave until they are

all answered. I'm 30 and I make sure my list of questions are answered before i

leave.

Good luck

Tawny

>

Can anyone tell me how often the blood work should be done?

[Guest guest]

If he's relatively early stage and he doesn't have any unusual

complaints, then every six months (or even yearly if he's doing really

well) is usually sufficient. That's how I was monitored for the first

ten years or so after diagnosis. At some point it went to every four

months, then a few months before transplant it went to monthly, and then

weekly. After the second weekly test I was at the top of the list and

got my transplant.

The main thing is to be sure that he knows what symptoms to watch for

that would cue him to call the doctor (or in some cases to go to the ER).

athan

[Guest guest]

Initially, every 3 months, now every six months (which is what I

had to do for my UC anyway).

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

From:

[mailto: ] On Behalf

Of jma99801

…Can anyone

tell me how often the blood work should be done?

[Guest guest]

Same schedule for my son.

Joanne H

(, Ca., mom of Joe, 18, UC/PSC 2-06; JRA 98)

Initially, every 3 months, now every six months (which is what I had to do for my UC anyway).

Arne

..

[Guest guest]

Hey, Welcome to the group. I was dx in'01 and had been sick since '84. I had my

first episode of extreme upper abdomenal pain which caused me several days in

the hospital. I continued with pain episodes for the next 7 years and then they

took my gall bladder out. It was a twisted scarred mess, non functioning. Then I

got even sicker, was in the hospital or emergency room repeatedly. They ran tons

of tests, finally in '00 had my ulcerative colitis diagnosed, and then four

months later '01 got PSC dx. Because of the meds I was on for UC, I had my blood

done monthly. that continued until three years ago, now they do them every 3-4

months, or sometimes more frequently since I am now on diuretics and meds for

high cholesterol. I think 4-6 months without other symptoms is pretty typical. I

have just bought and read a book that I wish I had found 30 years ago (since it

was only recently published wouldn't have been possible) I can not recommend it

enough for all of the new people on here

and everyone else. How Doctors Think by Jerome Groopman. I have never felt like

I could have consistently constructive dialogues with doctors. It has been hit

or miss. I would be convinced some doctor didn't like me from the moment I

walked int the office. After reading this book, I can in retrospect understand

what each was thinking (particularly in all those incorrect dx or brushing me

off). I would check that out for yourselves and your son. I found it at

and Noble. Feel free to ask any questions. Take care, Cheryl ID, PSC/UC 50years

old

How often should blood be monitored?

> My son was diagnosed with PSC last April and our family is devastated. He is

25 yrs old now and because he is an adult, we worry that he is not getting

properly monitored. When he was first diagnosed, they were monitoring his blood

every few weeks and now he hasn't been monitored for 4 months. Can anyone tell

me how often the blood work should be done?

>

>

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