Feeling a tad frustrated..

[Guest guest]

A couple of weeks ago I posted a question about it being normal to

have the LFT go up while on meds...and I thank you for the

responses..they were all helpful and encouraging, and most of all

understanding! Now for another..I have been on the increased meds for

the past 12 days, and I am concerned that I am not responding as I did

before. The first time I was on 60mg pred back in Nov, there was

immediate and total relief from joint pain and considerable easing of

fatigue. This time around has not been at all like that. I was on 60

for 2 days..no change. Then 40 for 4...only got slight relief..am now

on 30...I get some relief from the pain during the day, only to have

it return every evening. And the fatigue has been pretty unrelenting

this time. I am supposed to have followup bloodwork in 10 days.

Is there any significance in not responding to the meds the same

way? Can I keep going back to temporarily taking the high dosages like

this over and over? Somehow, the way I look at it, I think that might

be kind of harsh...

Any input, again, would be greatly appreciated!

THanks, nne

[Guest guest]

Hi nne,

I think the first time you experienced the typical prednisone high, everything feels wonderful, energy is high, the works. It feels like a true wonder drug. Over time, it no longer has that effect.

Pulse therapy, like you are having, CAN be effective and is the best way to prevent potentially harmful side effects from the pred. But, it's not always effective at maintaining. It is often necessary to be on 30 - 40 mg for a much longer period to go into remission.

Your LFT's do not always correlate well with the amount of pain and fatigue you experience. My LFT's have been in the normal range for well over a year, yet I have constant pain and crushing fatigue, so much so that I collect SSDI.

I guess I don't want to be discouraging, but you might have to learn to adjust to having chronic pain and fatigue. There is some controversy surrounding the type of treatment you are receiving. There is nothing wrong with short busts of high doses. The controversy stems from the re-elevation of your LFT's and whether that causes greater damage than a longer course of 30 - 40mg. With the longer course, you get more complications from the side effects of pred, but the LFT's tend to stay in the normal range for a longer period of time. So, it's a big trade off. Knowing how the side effects have harmed me, I would opt for the pulse therapy as long as it is able to adequately control you LFT's. It certainly is a reasonable first line treatment.

But...I also strongly urge you to get some counseling on how to deal with a chronic, life altering disease. The frustration of knowing that things will never again be the same can be more devastating than the illness itself.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: nneW5@... [mailto:nneW5@...]Sent: Monday, January 01, 2001 10:14 AM egroupsSubject: [ ] Feeling a tad frustrated..A couple of weeks ago I posted a question about it being normal to have the LFT go up while on meds...and I thank you for the responses..they were all helpful and encouraging, and most of all understanding! Now for another..I have been on the increased meds for the past 12 days, and I am concerned that I am not responding as I did before. The first time I was on 60mg pred back in Nov, there was immediate and total relief from joint pain and considerable easing of fatigue. This time around has not been at all like that. I was on 60 for 2 days..no change. Then 40 for 4...only got slight relief..am now on 30...I get some relief from the pain during the day, only to have it return every evening. And the fatigue has been pretty unrelenting this time. I am supposed to have followup bloodwork in 10 days. Is there any significance in not responding to the meds the same way? Can I keep going back to temporarily taking the high dosages like this over and over? Somehow, the way I look at it, I think that might be kind of harsh...Any input, again, would be greatly appreciated!THanks, nne

[Guest guest]

In a message dated 1/1/01 8:01:48 PM Pacific Standard Time, lrb@... writes:

The itching has been unbelievable

The only suggestion I have is to ask your doctor if you can take Atarax for the itching. My gastroenterologist said that even high doses are safe with AIH, and it was a wonderful relief. It does make you very sleepy until you get used to it, though. Best wishes -- I'll be thinking of you.

Harper

[Guest guest]

Hi, I already did this once, but sent my message wrong. So here goes again.

I'm Cheryl ID. I'm 42 years old and am in the process of getting diagnosed

with AIH. It's been a pretty confusing time. For a week I thought I had

PBC. Now the doc thinks it's autoimmune cholangiopathy with PBC overlap

symptoms. He also says I have Crohnes or ulcerative colitis . I've had

a liver biopsy it shows inflamation of the ducts and mild to moderate fibrosis,

I've been scoped at both ends, my anitmitochondria is negative, but I have

elevated ALT, AST, Alkaline Phosphates (really high), positive ANA (out

of sight high) my bilirubin has been 2.7 but has come down. My weight is

way down. I have constant diarrhea and bloody stools. I've been on Pred.

40mg for about three weeks and am waiting to see what that's done to my

Liver enzymes. That's suppose to help make the diagnosis. The itching has

been unbelievable, swelling in my lower legs and feet, really fatigued,

and now I'm getting more problems with the pred side effects. I'm frustrated

with the doctor (gastrointerologist)--don't think I know the right questions

to ask. Of course, my specialist is 200 miles away. Anyway, I appreciate

you all out there. Any questions I should be asking or thoughts would be

great. It took months before anyone would even check my liver. Kept telling

me I was depressed or stressed. It's actually a relief to have someone

tell me there is something the matter. Cheryl in ID

Don - Terradon Unlimited wrote:

Hi

nne,I

think the first time you experienced the typical prednisone high, everything

feels wonderful, energy is high, the works. It feels like a true wonder

drug. Over time, it no longer has that effect. Pulse

therapy, like you are having, CAN be effective and is the best way to prevent

potentially harmful side effects from the pred. But, it's not always effective

at maintaining. It is often necessary to be on 30 - 40 mg for a much longer

period to go into remission. Your

LFT's do not always correlate well with the amount of pain and fatigue

you experience. My LFT's have been in the normal range for well over a

year, yet I have constant pain and crushing fatigue, so much so that I

collect SSDI. I

guess I don't want to be discouraging, but you might have to learn to adjust

to having chronic pain and fatigue. There is some controversy surrounding

the type of treatment you are receiving. There is nothing wrong with short

busts of high doses. The controversy stems from the re-elevation of your

LFT's and whether that causes greater damage than a longer course of 30

- 40mg. With the longer course, you get more complications from the side

effects of pred, but the LFT's tend to stay in the normal range for a longer

period of time. So, it's a big trade off. Knowing how the side effects

have harmed me, I would opt for the pulse therapy as long as it is able

to adequately control you LFT's. It certainly is a reasonable first line

treatment.But...I

also strongly urge you to get some counseling on how to deal with a chronic,

life altering disease. The frustration of knowing that things will never

again be the same can be more devastating than the illness itself. DonTerradon

Unlimitedhttp://www.TerradonUnlimited.com"People

who ask me how we can still have such a positive attitude after all we’ve

been through, have it all wrong…We’ve been able to get through all that

we have BECAUSE we have a positive attitude". Don

Hanson 8/2000<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office"

/>

-----Original

Message-----

From: nneW5@...

[mailto:nneW5@...]

Sent: Monday, January 01,

2001 10:14 AM

egroups

Subject: [ ]

Feeling a tad frustrated..

A couple of weeks ago I posted a question about it being normal to

have the LFT go up while on meds...and I thank you for the

responses..they were all helpful and encouraging, and most of all

understanding! Now for another..I have been on the increased

meds for

the past 12 days, and I am concerned that I am not responding as

I did

before. The first time I was on 60mg pred back in Nov, there

was

immediate and total relief from joint pain and considerable easing

of

fatigue. This time around has not been at all like that.

I was on 60

for 2 days..no change. Then 40 for 4...only got slight relief..am

now

on 30...I get some relief from the pain during the day, only to

have

it return every evening. And the fatigue has been pretty

unrelenting

this time. I am supposed to have followup bloodwork in 10

days.

Is there any significance in not responding to the meds the same

way? Can I keep going back to temporarily taking the high dosages

like

this over and over? Somehow, the way I look at it, I think that

might

be kind of harsh...

Any input, again, would be greatly appreciated!

THanks, nne

[Guest guest]

Cheryl.... you listed many of the symptoms of Crohn`s ...what is you

doctor doing to treat that disease? It seems like he should be doing

something about it besides Rx anti-inflammatory...... but then again I`m

no doctor.The Crohns itself could be the cause of a lot of the other

problems..??? .... (itching is indicative of a bile duct disease) I

don`t see this as being AIH and prednisone is indicated for other

conditions even Crohn`s. Again I`m no MD... so I`m just rambling, I do

however pray that you get the proper Dx and proper treatment.

Jerry

[Guest guest]

Cheryl,

I suggest you ask your doc about fluid retention.

Shireen

>From: Logan Berg <lrb@...>

>Reply- egroups

> egroups

>Subject: Re: [ ] Feeling a tad frustrated..

>Date: Mon, 01 Jan 2001 20:58:15 -0700

>

>Hi, I already did this once, but sent my message wrong. So here goes

>again. I'm Cheryl ID. I'm 42 years old and am in the process of getting

>diagnosed with AIH. It's been a pretty confusing time. For a week I

>thought I had PBC. Now the doc thinks it's autoimmune cholangiopathy

>with PBC overlap symptoms. He also says I have Crohnes or ulcerative

>colitis . I've had a liver biopsy it shows inflamation of the ducts and

>mild to moderate fibrosis, I've been scoped at both ends, my

>anitmitochondria is negative, but I have elevated ALT, AST, Alkaline

>Phosphates (really high), positive ANA (out of sight high) my bilirubin

>has been 2.7 but has come down. My weight is way down. I have constant

>diarrhea and bloody stools. I've been on Pred. 40mg for about three

>weeks and am waiting to see what that's done to my Liver enzymes. That's

>suppose to help make the diagnosis. The itching has been unbelievable,

>swelling in my lower legs and feet, really fatigued, and now I'm getting

>more problems with the pred side effects. I'm frustrated with the doctor

>(gastrointerologist)--don't think I know the right questions to ask. Of

>course, my specialist is 200 miles away. Anyway, I appreciate you all

>out there. Any questions I should be asking or thoughts would be great.

>It took months before anyone would even check my liver. Kept telling me

>I was depressed or stressed. It's actually a relief to have someone tell

>me there is something the matter. Cheryl in ID

>

>Don - Terradon Unlimited wrote:

>

> > Hi nne,I think the first time you experienced the typical

> > prednisone high, everything feels wonderful, energy is high, the

> > works. It feels like a true wonder drug. Over time, it no longer has

> > that effect. Pulse therapy, like you are having, CAN be effective and

> > is the best way to prevent potentially harmful side effects from the

> > pred. But, it's not always effective at maintaining. It is often

> > necessary to be on 30 - 40 mg for a much longer period to go into

> > remission. Your LFT's do not always correlate well with the amount of

> > pain and fatigue you experience. My LFT's have been in the normal

> > range for well over a year, yet I have constant pain and crushing

> > fatigue, so much so that I collect SSDI. I guess I don't want to be

> > discouraging, but you might have to learn to adjust to having chronic

> > pain and fatigue. There is some controversy surrounding the type of

> > treatment you are receiving. There is nothing wrong with short busts

> > of high doses. The controversy stems from the re-elevation of your

> > LFT's and whether that causes greater damage than a longer course of

> > 30 - 40mg. With the longer course, you get more complications from the

> > side effects of pred, but the LFT's tend to stay in the normal range

> > for a longer period of time. So, it's a big trade off. Knowing how the

> > side effects have harmed me, I would opt for the pulse therapy as long

> > as it is able to adequately control you LFT's. It certainly is a

> > reasonable first line treatment.But...I also strongly urge you to get

> > some counseling on how to deal with a chronic, life altering disease.

> > The frustration of knowing that things will never again be the same

> > can be more devastating than the illness itself. DonTerradon

> > Unlimitedhttp://www.TerradonUnlimited.com " People who ask me how we can

> > still have such a positive attitude after all we’ve been through, have

> > it all wrong…We’ve been able to get through all that we have BECAUSE

> > we have a positive attitude " . Don Hanson 8/2000<?xml:namespace prefix

> > = o ns = " urn:schemas-microsoft-com:office:office " />

> >

> > [ ] Feeling a tad frustrated..

> >

> > A couple of weeks ago I posted a question about it being

> > normal to

> > have the LFT go up while on meds...and I thank you for the

> > responses..they were all helpful and encouraging, and most

> > of all

> > understanding! Now for another..I have been on the

> > increased meds for

> > the past 12 days, and I am concerned that I am not

> > responding as I did

> > before. The first time I was on 60mg pred back in Nov,

> > there was

> > immediate and total relief from joint pain and considerable

> > easing of

> > fatigue. This time around has not been at all like that. I

> > was on 60

> > for 2 days..no change. Then 40 for 4...only got slight

> > relief..am now

> > on 30...I get some relief from the pain during the day, only

> > to have

> > it return every evening. And the fatigue has been pretty

> > unrelenting

> > this time. I am supposed to have followup bloodwork in 10

> > days.

> > Is there any significance in not responding to the meds the

> > same

> > way? Can I keep going back to temporarily taking the high

> > dosages like

> > this over and over? Somehow, the way I look at it, I think

> > that might

> > be kind of harsh...

> > Any input, again, would be greatly appreciated!

> > THanks, nne

> >

> >

> >

> >