prednisone

[Guest guest]

In a message dated 1/8/02 12:51:32 PM Pacific Standard Time, bamrand@... writes:

Lovely jewelry to go with our lovely bodies!!

I keep thinking that for what this disease has cost me financially I could have a whole armful of the bracelets in pave diamonds. Oh, well. How very lucky we are to be able to get treatment, imperfect as it may be.

Harper

[Guest guest]

In a message dated 1/8/02 12:35:15 PM Pacific Standard Time, flatcat9@... writes:

I've been on 5 mg for many months (down from 80 mg). I asked my gp why I still feel strange and why I'm not losing weight at 5 mg. (She is not in charge of my liver treatment.) She very quietly muttered something about thinking that the body may process administered prednisone differently from the natural hormone.

Dear Harper:

My doctor has muttered much the same thing. I've questioned why I've not been able to lose weight even though my prednisone is between 6 and 8mg, and he said that I'm probably just one of those people that won't lose until I'm completely off of it. I've gained a whopping 80 pounds since I started taking prednisone in 1995. I've dieted, starved, cussed, tried to exercise as much as possible and done everything I could, to no avail. I'm tired of it all. Now I eat healthy and try to be as active as I can and just pray that once I'm off of the prednisone, the weight will magically start to drop. Well...a girl can hope can't she???? Meanwhile, I've become as accepting of my 'pudgies' as is possible. I mean...I'm still damn cute! I'll share again what my husband says 'in fun' to me every now and then. He says, "Acres and acres of Tweetie Bird and it's all MINE!"

Kathy (AIH)

Seattle area

[Guest guest]

Harper,

You're a hoot. The reason I want a medic alert bracelet is because of the

multiple medical problems as well as the magnitude of drugs that have now

become so complicated. I'm a single MOM and if I'm unable to tell someone

they would have a heart attack when the look at my medicines. You should

have seen the EMT who took me to the hospital the night I had the bleed. I

thought he was going to stroke when I pulled out my med's.

[Guest guest]

:I have had my medic alert bracelet ever since I was dx'ed with AIH. The hept. requested it, and thanks to him, I got it. When I had my heart attack last year, it was a life saver.

-Clyde

[Guest guest]

Oh Kathy, how sweet! You are blessed. My husband is wonderful too! He loves me for me, not for what I look like. He realized after the dx of celiac that the fat was not due to my lack of caring. We both know it is what was dealt to me. I am getting more and more accepting of myself, but it is hard to lose years of "fat" abuse. I am much better at it that I was. Guess I better count my blessings!

debby

Re: [ ] Prednisone

In a message dated 1/8/02 12:35:15 PM Pacific Standard Time, flatcat9@... writes:

I've been on 5 mg for many months (down from 80 mg). I asked my gp why I still feel strange and why I'm not losing weight at 5 mg. (She is not in charge of my liver treatment.) She very quietly muttered something about thinking that the body may process administered prednisone differently from the natural hormone. Dear Harper:My doctor has muttered much the same thing. I've questioned why I've not been able to lose weight even though my prednisone is between 6 and 8mg, and he said that I'm probably just one of those people that won't lose until I'm completely off of it. I've gained a whopping 80 pounds since I started taking prednisone in 1995. I've dieted, starved, cussed, tried to exercise as much as possible and done everything I could, to no avail. I'm tired of it all. Now I eat healthy and try to be as active as I can and just pray that once I'm off of the prednisone, the weight will magically start to drop. Well...a girl can hope can't she???? Meanwhile, I've become as accepting of my 'pudgies' as is possible. I mean...I'm still damn cute! I'll share again what my husband says 'in fun' to me every now and then. He says, "Acres and acres of Tweetie Bird and it's all MINE!" Kathy (AIH)Seattle area

[Guest guest]

Clyde, do you have to pay a yearly fee for the medic alert bracelet? Just wondering...debby

Re: [ ] Prednisone

:I have had my medic alert bracelet ever since I was dx'ed with AIH. The hept. requested it, and thanks to him, I got it. When I had my heart attack last year, it was a life saver.

-Clyde

[Guest guest]

Bethanne,

By this time you probably have the answers you ask for but I will take a

stab at it.

-Prednisone is a gluco-streiod which suppresses inflamation.

-The autoimmune disease stimulates the immune system which results in

inflamation.

- A high dose of Prednisone is needed to ZAP the inflamation and settle down

the liver, the tapering dose keeps it down.

-As the inflamation subsides, scar tissue is laid down which is the reason

for the cirrosis

-introduction of glucosteriods (in the form of prednisone) in excess of the

bodies normal rate of production~7.5-5 mg, means the body does not need to

produce it, the natural system shuts off. [that's why we become

immunosupressed]

-your Dr. is telling you that you need a little more than the body will

normally produce; you need 10mg to 'hold' down the inflamation.

- the extreeme aches and pains we feel when we are tapering off, usually

dropping below 10, is because our natural immunity takes a while to

normalize and in the meantime we feel in excess every ache pain etc.... the

opposite of 60-80 mg when you feel on to of the world and nothing aches. (I

used to run extra miles when I was put back on prednisone because I knew I

could without hrting afterward.

The fat, prednisone-puff, what ever you want to call it happens because in

normal bodychemistry, food (esp carbohydrates) are digested and converted

into glycogen which in normal amounts is burned off as energy, when not

burned off, is srored as fat. The prednisone supplies the body with fake

glucosteriods and we don't need the glycogen waiting to be burned for fuel

so it converts to fat.

If you extend this further, I body is in a state of stress and the message

to our stystem is that we need fuel therfore we feel like we are starving.

Sorry if I 1. confused you or 2. told you more than you wanted to know.

Good luck.

Patty - Miami

[ ] Prednisone

Hi Everyone! I hope all is well. Since the topic lately is

prednisone I thought I would pass on what my hepatologist just told

me. Apparently your body makes 7.5mg of prednisone every day and the

prednisone that we take replaces that and your body quits making it.

So once you are down to 7.5mg it's really supposed to be like not

being on prednisone at all. He told me this because I got really

down when he said I would probably stay on 10mg for a LONG time!! He

said it was really like being on 2.5. The 7.5 my body usually makes

and the 2.5 extra. I knew my body made it but wasn't sure of the

exacts. I hope this helps a little. The doc did say that my side

effects should subside once I get down to 10(keeping my fingers

crossed). He also said I will need to wear a medical bracelet

stating I'm on prednisone. If you are involved in something

traumatic like a car accident the docs need to know to give you Extra

prednisone. Normally your body would produce it but it has stopped

due to taking the oral.

That is what I was told now maybe someone can clear this up for me.

I have had tremendous headaches for a week and I believe they are

from sinus yet I have no other symptoms like sneezing. THe doctor

who just put me on antibiotic said I can have severe infections and

won't know it. That just seems wild, but I don't understand it. If

it masks inflammation then how is it healing my liver? Is the

inflammation really going away? Thanks for all your help. This is a

really great group.

Bethanne

[Guest guest]

Patti in Miami, thanks for the information on Prednisone and how it works.

Harper

[Guest guest]

Thank you Thank you Thank you Patti!! You have no idea how this helps. Even when I'm in the doctors office and he is explaining it is still hard to take it all in. I even take people with me, but I think they listen to more of the overall picture and what needs to be done, etc. Your info did help and no it was not too much. Thanks again!

Bethanne

" J. " <scott_p@...> wrote: Bethanne,By this time you probably have the answers you ask for but I will take astab at it.-Prednisone is a gluco-streiod which suppresses inflamation.-The autoimmune disease stimulates the immune system which results ininflamation.- A high dose of Prednisone is needed to ZAP the inflamation and settle downthe liver, the tapering dose keeps it down.-As the inflamation subsides, scar tissue is laid down which is the reasonfor the cirrosis-introduction of glucosteriods (in the form of prednisone) in excess of thebodies normal rate of production~7.5-5 mg, means the body does not need toproduce it, the natural system shuts off. [that's why we becomeimmunosupressed]-your Dr. is telling you that you need a little more than the body willnormally produce; you need 10mg to 'hold' down the inflamation.- the extreeme aches and pains we feel when we are tapering off, usuallydropping below 10, is because our natural immunity takes a while tonormalize and in the meantime we feel in excess every ache pain etc.... theopposite of 60-80 mg when you feel on to of the world and nothing aches. (Iused to run extra miles when I was put back on prednisone because I knew Icould without hrting afterward.The fat, prednisone-puff, what ever you want to call it happens because innormal bodychemistry, food (esp carbohydrates) are digested and convertedinto glycogen which in normal amounts is burned off as energy, when notburned off, is srored as fat. The prednisone supplies the body with fakeglucosteriods and we don't need the glycogen waiting to be burned for fuelso it converts to fat.If you extend this further, I body is in a state of stress and the messageto our stystem is that we need fuel therfore we feel like we are starving.Sorry if I 1. confused you or 2. told you more than you wanted to know.Good luck.Patty - Miami-----Original Message-----From: bamrand [mailto:bamrand@...]Sent: Tuesday, January 08, 2002 1:35 PM Subject: [ ] PrednisoneHi Everyone! I hope all is well. Since the topic lately isprednisone I thought I would pass on what my hepatologist just toldme. Apparently your body makes 7.5mg of prednisone every day and theprednisone that we take replaces that and your body quits making it.So once you are down to 7.5mg it's really supposed to be like notbeing on prednisone at all. He told me this because I got reallydown when he said I would probably stay on 10mg for a LONG time!! Hesaid it was really like being on 2.5. The 7.5 my body usually makesand the 2.5 extra. I knew my body made it but wasn't sure of theexacts. I hope this helps a little. The doc did say that my sideeffects should subside once I get down to 10(keeping my fingerscrossed). He also said I will need to wear a medical braceletstating I'm on prednisone. If you are involved in somethingtraumatic like a car accident the docs need to know to give you Extraprednisone. Normally your body would produce it but it has stoppeddue to taking the oral.That is what I was told now maybe someone can clear this up for me.I have had tremendous headaches for a week and I believe they arefrom sinus yet I have no other symptoms like sneezing. THe doctorwho just put me on antibiotic said I can have severe infections andwon't know it. That just seems wild, but I don't understand it. Ifit masks inflammation then how is it healing my liver? Is theinflammation really going away? Thanks for all your help. This is areally great group.Bethanne

[Guest guest]

In a message dated 1/9/02 6:02:06 PM Pacific Standard Time, kforrestz@... writes:

well, i have had some problems, like i can't seem to catch up with myself-i am so speeded up!!! also when i went down from 50 to 40 mg i turned into another person (not a nice one). i just freak out about the possibility of having to take it for a long time, but a friend of mine said, "well, it's better than death, isn't it"?

This is a usual reaction. Remember, you won't have to take the high doses for long. The reduction increments will become smaller -- typically by 10s, then 5s, the 2.5s -- but they will happen. If you're typical, you'll feel better soon.

Harper

[Guest guest]

Thank you Patty that is the only explanation that has ever made sense to me.

The way it sounds though is that if we increase our physical activity won't

that combat the extra glycogen? I know that isn't a possibility for everyone

but if we are able to still exercise will that help? To tell you the truth I

kind of got to thinking " what's the point? " if I couldn't overcome the

prednisone then why bother but if there is a chace of doing so maybe I will

increase my exercise routine to a more challenging level. Peggy

[Guest guest]

In a message dated 1/11/02 8:24:44 AM Pacific Standard Time, PWGBreeze@... writes:

if I couldn't overcome the prednisone then why bother but if there is a chace of doing so maybe I will increase my exercise routine to a more challenging level. Peggy

I figure I need a lot more muscles to lug my new fat around. Exercise has many benefits beyond weight reduction.

Harper

[Guest guest]

Peggy,

Yes. I almost feel guilty saying this because I know about the fatigue, I

had it for many years, but up to 1994, 14 years after I was diagnosed I

could run 5-7 miles and had an awesome body 5'6 " and 125 lbs, all muscle.

It's the later stages that got to me(up to 175lbs. ick!))

Re: [ ] Prednisone

Thank you Patty that is the only explanation that has ever made sense to me.

The way it sounds though is that if we increase our physical activity won't

that combat the extra glycogen? I know that isn't a possibility for everyone

but if we are able to still exercise will that help? To tell you the truth I

kind of got to thinking " what's the point? " if I couldn't overcome the

prednisone then why bother but if there is a chace of doing so maybe I will

increase my exercise routine to a more challenging level. Peggy

[Guest guest]

In a message dated 1/12/02 6:08:43 PM Pacific Standard Time, MadderGlo@... writes:

Ever since starting Prednisone I have been very fatigued every time I say anything to my GI he says it is not due to the med or the AIH he claims it is most likely due to hormornes. There is just some days i am so tired I can hardly function. I am glad to hear there are others, what do your docs say, do they think it is from the meds or AIH? Please let me know I think I am going crazy!!!!

Glo from Sunny CA

Glo from CA, did you see my posting a couple of days ago, which was excerpts from the Palmer book? It says, basically, that fatigue just goes with liver disease.

Harper

[Guest guest]

In a message dated 1/12/02 7:56:42 PM Pacific Standard Time, bamrand@... writes:

Prednisone generally has the opposite effect of being fatigued. It makes you wired, but you can have fatigue from the disease itself. Hope this helps. Bethanne

That's certainly true about Prednisone. However, I found that the Prednisone gave me false energy so that, after hours of extreme liveliness, I'd suddenly crash, be almost unable to even turn over in bed. I felt as if that severe tiredness was a result of the "wired" Prednisone state. I could be wrong, though.

Harper

[Guest guest]

In a message dated 1/12/02 8:58:16 PM Pacific Standard Time, seafarer52@... writes:

I am just on imuran and there are days that I wish I could just stay in bed all day. I have an appointment on the 15th so I'll be asking my doctor if it's the meds that I take making me feel tired alot. I'll keep you informed of what she says.

Ann CT

Do you know why you're taking only Imuran, not Prednisone? I'm just curious, interested in how different doctors treat AIH.

Harper

[Guest guest]

In a message dated 1/12/02 9:12:51 PM Pacific Standard Time, seafarer52@... writes:

When she first started me on meds, it was predisone and imuran together. When my counts started going down she took me off predisone to see if just the imuran would work. It did and my counts are almost normal. Hopefully, they will stay that way. I have blood work on the 21st and we will see how it goes.

Ann CT

Great!

[Guest guest]

In a message dated 1/12/02 9:19:56 PM Pacific Standard Time, seafarer52@... writes:

I am going to ask her how many patients she has that has AIH. I'm curious as too how many she treats. Who knows I may be her first LOL.

Ann CT

Well, she's had great results with you! As a comparison, my doctor says he has about a dozen at any one time.

Harper

[Guest guest]

In a message dated 1/12/02 9:19:56 PM Pacific Standard Time, seafarer52@... writes:

I am going to ask her how many patients she has that has AIH. I'm curious as too how many she treats. Who knows I may be her first LOL.

Ann CT

I said "my doctor" had about a dozen AIH patients at any one time. I meant my gastro-enterologist. My general practitioner said she has never seen another case in twenty-five years in a full-capacity big city practice. Fortunately, she knew where to send me immediately.

Harper

[Guest guest]

Hello:

Ever since starting Prednisone I have been very fatigued every time I say

anything to my GI he says it is not due to the med or the AIH he claims it

is most likely due to hormornes. There is just some days i am so tired I

can hardly function. I am glad to hear there are others, what do your docs

say, do they think it is from the meds or AIH? Please let me know I think I

am going crazy!!!!

Glo from Sunny CA

>From: " J. " <scott_p@...>

>Reply-

>< >

>Subject: RE: [ ] Prednisone

>Date: Fri, 11 Jan 2002 19:48:27 -0500

>

>Peggy,

>Yes. I almost feel guilty saying this because I know about the fatigue, I

>had it for many years, but up to 1994, 14 years after I was diagnosed I

>could run 5-7 miles and had an awesome body 5'6 " and 125 lbs, all muscle.

>It's the later stages that got to me(up to 175lbs. ick!))

> Re: [ ] Prednisone

>

>

>Thank you Patty that is the only explanation that has ever made sense to

>me.

>The way it sounds though is that if we increase our physical activity won't

>that combat the extra glycogen? I know that isn't a possibility for

>everyone

>but if we are able to still exercise will that help? To tell you the truth

>I

>kind of got to thinking " what's the point? " if I couldn't overcome the

>prednisone then why bother but if there is a chace of doing so maybe I will

>increase my exercise routine to a more challenging level. Peggy

>

>

>

[Guest guest]

Prednisone generally has the opposite effect of being fatigued. It makes you wired, but you can have fatigue from the disease itself. Hope this helps.

Bethanne

Mad Glo <MadderGlo@...> wrote: Hello:Ever since starting Prednisone I have been very fatigued every time I say anything to my GI he says it is not due to the med or the AIH he claims it is most likely due to hormornes. There is just some days i am so tired I can hardly function. I am glad to hear there are others, what do your docs say, do they think it is from the meds or AIH? Please let me know I think I am going crazy!!!!Glo from Sunny CA>From: " J. " <scott_p@...>>Reply- >< >>Subject: RE: [ ] Prednisone>Date: Fri, 11 Jan 2002 19:48:27 -0500>>Peggy,>Yes. I almost feel guilty saying this because I know about the fatigue, I>had it for many years, but up to 1994, 14 years after I was diagnosed I>could run 5-7 miles and had an awesome body 5'6" and 125 lbs, all muscle.>It's the later stages that got to me(up to 175lbs. ick!))> Re: [ ] Prednisone>>>Thank you Patty that is the only explanation that has ever made sense to >me.>The way it sounds though is that if we increase our physical activity won't>that combat the extra glycogen? I know that isn't a possibility for >everyone>but if we are able to still exercise will that help? To tell you the truth >I>kind of got to thinking "what's the point?" if I couldn't overcome the>prednisone then why bother but if there is a chace of doing so maybe I will>increase my exercise routine to a more challenging level. Peggy>>>

[Guest guest]

I am just on imuran and there are days that I wish I could just stay in bed all day. I have an appointment on the 15th so I'll be asking my doctor if it's the meds that I take making me feel tired alot. I'll keep you informed of what she says. Ann CT Re: [ ] Prednisone>>>Thank you Patty that is the only explanation that has ever made sense to>me.>The way it sounds though is that if we increase our physical activity won't>that combat the extra glycogen? I know that isn't a possibility for>everyone>but if we are able to still exercise will that help? To tell you the truth>I>kind of got to thinking "what's the point?" if I couldn't overcome the>prednisone then why bother but if there is a chace of doing so maybe I will>increase my exercise routine to a more challenging level. Peggy>>>

[Guest guest]

When she first started me on meds, it was predisone and imuran together. When my counts started going down she took me off predisone to see if just the imuran would work. It did and my counts are almost normal. Hopefully, they will stay that way. I have blood work on the 21st and we will see how it goes. Ann CT Re: [ ] Prednisone In a message dated 1/12/02 8:58:16 PM Pacific Standard Time, seafarer52@... writes: I am just on imuran and there are days that I wish I could just stay in bed all day. I have an appointment on the 15th so I'll be asking my doctor if it's the meds that I take making me feel tired alot. I'll keep you informed of what she says. Ann CT Do you know why you're taking only Imuran, not Prednisone? I'm just curious, interested in how different doctors treat AIH. Harper

[Guest guest]

I am going to ask her how many patients she has that has AIH. I'm curious as too how many she treats. Who knows I may be her first LOL. Ann CT Re: [ ] Prednisone In a message dated 1/12/02 9:12:51 PM Pacific Standard Time, seafarer52@... writes: When she first started me on meds, it was predisone and imuran together. When my counts started going down she took me off predisone to see if just the imuran would work. It did and my counts are almost normal. Hopefully, they will stay that way. I have blood work on the 21st and we will see how it goes. Ann CT Great!

[Guest guest]

That's what I had thought. I don't see my PCP too often. Just my liver doctor. Glad yours sent you to someone who knows what they are doing. My PCP didn't send me. My surgeon did. The one that took my gallbladder out. Knew something wasn't right when my liver counts didn't go back to normal. Ann CT Re: [ ] Prednisone In a message dated 1/12/02 9:19:56 PM Pacific Standard Time, seafarer52@... writes: I am going to ask her how many patients she has that has AIH. I'm curious as too how many she treats. Who knows I may be her first LOL. Ann CT I said "my doctor" had about a dozen AIH patients at any one time. I meant my gastro-enterologist. My general practitioner said she has never seen another case in twenty-five years in a full-capacity big city practice. Fortunately, she knew where to send me immediately. Harper