RE: IMURAN.... anyone taken it? on it? previously on it?

[Guest guest]

GI's have told me the same thing. They are a miserable breed.. wondering what

they would do if they were in that position themselves.

Why don't you look at LDN- Low Dose Naltrexone before you give something like

Imuran a shot? You can always go on it if it doesn't help you. Are you on any

immunosuppressants noww?

Jodi

[Guest guest]

Hello,

Crystal keeps a list of doctors across the country who prescribe

LDN. Her email is www.angelindisguiseldn@...

Let her know what city.

I would try LDN (www.LowDoseNaltrexone.org)

first.

Carol

CD 21 yrs

SCD 4.5 yrs

B12 shots & LDN

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of scdguy26

My doctor wants me to start Imuran, but I told

him I wasn't rdy to step up to that level of drug yet (his response to me was

find another doctor then) So, i'm thinking about taking it but I want to hear

stories from people that have taken it. Has SCD enabled you to go off of it?

The doc said i'd be on it for the rest of my life.

[Guest guest]

Just Asacol. I wanted to get more entocort enema's but the doc said no. They are a steroid so they are immunosuppressant but they work overnight. Great for me to control my pain/bleeding while I stick with SCD to get things squared away. Also on asacol. I stopped the Prednisone on my own.-UC - 1 yearSCD - 1 month 100% strict and 4 months restricted diet.Asacol - 4 pills 3 times a day - hopefully scd will help me get off these!10mg prednisone (tapering down to 0 because it's doing nothing)Hydrocortisone when I need it.

To: BTVC-SCD From: jodah235@...Date: Mon, 6 Jul 2009 22:17:29 +0000Subject: Re: IMURAN.... anyone taken it? on it? previously on it?

GI's have told me the same thing. They are a miserable breed.. wondering what they would do if they were in that position themselves.Why don't you look at LDN- Low Dose Naltrexone before you give something like Imuran a shot? You can always go on it if it doesn't help you. Are you on any immunosuppressants noww? Jodi

Insert movie times and more without leaving Hotmail®. See how.

[Guest guest]

,

I don't know on what basis your doc made that decision, and I certainly don't

know more than he does, but I do have some questions.

Is there a reason he won't give you more enemas, and a little more time to think

things over? Is this an emergency?

You have told him you were not comfortable with the " big line " drugs. My GI told

me there are two schools of thought with this. One advocates starting with the

lesser drugs and moving into the bigger ones if things don't work. Another is to

go with the big drugs to try to get as much control as possible. I don't know

how he stands with his approach.

I think deciding on a drug that you will take for the rest of your life,

especially when you are young, is a very emotional step. For some people, it is

the right choice, and even if his decision is the right choice, the idea that

you listen to him or find another doctor, is no doubt upsetting because it

closes off the conversation, and makes it hard for you to communicate with him.

I don't have advice, but just hope to validate your feelings and hope you can

feel well enough to take the time to explore all your options without risking

your health, as it seems there are many approaches.

PJ

>

>

> Just Asacol. I wanted to get more entocort enema's but the doc said no. They

are a steroid so they are immunosuppressant but they work overnight. Great for

me to control my pain/bleeding while I stick with SCD to get things squared

away. Also on asacol. I stopped the Prednisone on my own.

>

> -

> UC - 1 year

> SCD - 1 month 100% strict and 4 months restricted diet.

> Asacol - 4 pills 3 times a day - hopefully scd will help me get off these!

> 10mg prednisone (tapering down to 0 because it's doing nothing)

> Hydrocortisone when I need it.

>

>

>

>

>

>

> To: BTVC-SCD

> From: jodah235@...

> Date: Mon, 6 Jul 2009 22:17:29 +0000

> Subject: Re: IMURAN.... anyone taken it? on it? previously on it?

>

>

>

>

>

>

>

> GI's have told me the same thing. They are a miserable breed.. wondering what

they would do if they were in that position themselves.

>

> Why don't you look at LDN- Low Dose Naltrexone before you give something like

Imuran a shot? You can always go on it if it doesn't help you. Are you on any

immunosuppressants noww?

>

> Jodi

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Insert movie times and more without leaving Hotmail®.

>

http://windowslive.com/Tutorial/Hotmail/QuickAdd?ocid=TXT_TAGLM_WL_HM_Tutorial_Q\

uickAdd_062009

>

[Guest guest]

As a senior in college I started having intestinal problems, but I

wasn't formally diagnosed I was diagnosed with Crohn's until about a

year later in 1996, and I was on Imuran for a couple years in the

late 1990s to the early 2000s. I am fortunate to only live 2 1/2

hours from Rochester, Minnesota, and was able to start going to Mayo

Clinic at that time. Every summer since 1996 I have my annual review

at Mayo Clinic.

During that time was was having some flares, would run a fever for a

couple days, and get prescribed a short dose of prednisone to help

get it back under control. In August if 2004 I had a bowel

obstruction, and fortunately it was resolved with no surgery, but did

have a hospital stay for a couple days and was on a liquid then soft

diet for about 6 weeks.

After the obstruction, two variables were changed in my life. First,

my GI doctor started me on Remicade (more on Remidace after diet).

Second, I started to research how diet could affect Crohn's (and

other digestive conditions such as ulcerative colitis). I did get

better, but I think it was a combination of both the Remicade and

changing my diet. At that time, my reference was, and still is, The

New Eating Right For a Bad Gut by Scala. Since then, what I've

discovered both from reading the book and trial and error that I have

to manage my diet, much like a diabetic has to manage his or her

diet. When I stick to my safe foods, I'm good. If I eat some foods

that I shouldn't then the next day, it's a bad day with a lot of time

in the bathroom. Scala's diet isn't as strict as the SCD for carbs.

Basically it's staying away from spicy, fatty and other foods that

are difficult for the body to digest. Fish. fish oil and flaxseed

oil are good because of their anti-inflammatory properties. My wife

has arthritis, and is starting to go gluten-free as she thinks she's

gluten sensitive, and I'm starting to read more about SCD so I can

further modify my diet. The other diet strategy I've used is to drink

Ensure (and the cheaper Wal-mart brand Equate) daily as a diet

supplement- this allows me to eat less food and lower the digestive

load on my colon.

On to Remicade, it was working well until I contracted a lung

infection in November of 2007- histoplasmosis (it used to be called

the bird flu) Because of my compromised immune system, it ended up

spreading and going systemic, a " normal " person would have had flu-

like sys-toms for a couple days and been finished . My local

hospital shipped me up to Rochester to Mayo Clinic/St. 's

Hospital, and I was up there for almost three weeks. Ran fevers of

102+ and to make a long story short, was miserable. Lost 30 pounds,

and during a check-up later a Mayo Doctor told me that if I hadn't

been a healthy 35 year old, I would have died. The silver lining was

that as sick as I was, my Crohn's didn't flare up. I was taken off

the Remicade, but to kill the infection ended up on an antibiotic for

a year-- it was a fungal infection and it's a lot harder to kill a

fungus than a bacteria. It turned out that I was inly the 4th person

that Mayo Clinic knew about to experience this specific infection

after being on Remicade. That's the short version...

Had my annual Mayo visit and my doctor wants to start me on Humera,

but I'm not very excited, as it also lowers the immune system as a

side-effect of lowering the inflammation in my small intestine. But

in the end I may not have a choice since my CT scan showed a

progression of inflammation but it's less invasive than the other

option of a surgical colon resection. There are other people that

have discontinued Remicade and started Humera, so that's encouraging.

My understanding from living with Crohn's for over a decade is that

Imuran (and Flagyl, etc.) are first line drugs, the if they don't

work to manage the inflammation of a Crohn's or UC then Remicade and

humera are the " big gun " drugs. My case is very unique, if I hadn't

contracted histoplasmosis, I would probably still be on the Remicade.

I've had a pretty good experience at Mayo Clinic, about my only

complaint is that my doctor minimizes when I want to talk about

diet. He thinks it is great that i manage what I eat and that I

research it, but that's about it.

If anyone has to start Remicade or Humera, make sure you talk with

your doctor about what situations you have to avoid that are high

risk for picking up an infection.

My hope, my goal, is that by adding the SCD component to what I'm

already doing, I can at least delay starting the humera. It should

also help that some huge stressors in my life, from the past year

are finally gone, all i will say is that this past year was horrible.

The details would take a couple more paragraphs, too much for now,

but what I can say that my wife and other people that saw my

situation are amazed that I kept going and didn't quit. I personally

think the stress was a big part of my colon inflammation getting worse.

I've taken enough time, hopefully this helps a little.

Be thankful for every day that we have, be thankful for our family

and friends.

Jim Wolf

[Guest guest]

You've been through a lot. Thanks for sharing your story about the downside of Remicade.Good luck with the SCD, it works wonders. Here's to hoping that things improve for you soon.--

As a senior in college I started having intestinal problems, but I

wasn't formally diagnosed I was diagnosed with Crohn's until about a

year later in 1996, and I was on Imuran for a couple years in the

late 1990s to the early 2000s. I am fortunate to only live 2 1/2

hours from Rochester, Minnesota, and was able to start going to Mayo

Clinic at that time. Every summer since 1996 I have my annual review

at Mayo Clinic.

During that time was was having some flares, would run a fever for a

couple days, and get prescribed a short dose of prednisone to help

get it back under control. In August if 2004 I had a bowel

obstruction, and fortunately it was resolved with no surgery, but did

have a hospital stay for a couple days and was on a liquid then soft

diet for about 6 weeks.

After the obstruction, two variables were changed in my life. First,

my GI doctor started me on Remicade (more on Remidace after diet).

Second, I started to research how diet could affect Crohn's (and

other digestive conditions such as ulcerative colitis). I did get

better, but I think it was a combination of both the Remicade and

changing my diet. At that time, my reference was, and still is, The

New Eating Right For a Bad Gut by Scala. Since then, what I've

discovered both from reading the book and trial and error that I have

to manage my diet, much like a diabetic has to manage his or her

diet. When I stick to my safe foods, I'm good. If I eat some foods

that I shouldn't then the next day, it's a bad day with a lot of time

in the bathroom. Scala's diet isn't as strict as the SCD for carbs.

Basically it's staying away from spicy, fatty and other foods that

are difficult for the body to digest. Fish. fish oil and flaxseed

oil are good because of their anti-inflammatory properties. My wife

has arthritis, and is starting to go gluten-free as she thinks she's

gluten sensitive, and I'm starting to read more about SCD so I can

further modify my diet. The other diet strategy I've used is to drink

Ensure (and the cheaper Wal-mart brand Equate) daily as a diet

supplement- this allows me to eat less food and lower the digestive

load on my colon.

On to Remicade, it was working well until I contracted a lung

infection in November of 2007- histoplasmosis (it used to be called

the bird flu) Because of my compromised immune system, it ended up

spreading and going systemic, a " normal " person would have had flu-

like sys-toms for a couple days and been finished . My local

hospital shipped me up to Rochester to Mayo Clinic/St. 's

Hospital, and I was up there for almost three weeks. Ran fevers of

102+ and to make a long story short, was miserable. Lost 30 pounds,

and during a check-up later a Mayo Doctor told me that if I hadn't

been a healthy 35 year old, I would have died. The silver lining was

that as sick as I was, my Crohn's didn't flare up. I was taken off

the Remicade, but to kill the infection ended up on an antibiotic for

a year-- it was a fungal infection and it's a lot harder to kill a

fungus than a bacteria. It turned out that I was inly the 4th person

that Mayo Clinic knew about to experience this specific infection

after being on Remicade. That's the short version...

Had my annual Mayo visit and my doctor wants to start me on Humera,

but I'm not very excited, as it also lowers the immune system as a

side-effect of lowering the inflammation in my small intestine. But

in the end I may not have a choice since my CT scan showed a

progression of inflammation but it's less invasive than the other

option of a surgical colon resection. There are other people that

have discontinued Remicade and started Humera, so that's encouraging.

My understanding from living with Crohn's for over a decade is that

Imuran (and Flagyl, etc.) are first line drugs, the if they don't

work to manage the inflammation of a Crohn's or UC then Remicade and

humera are the " big gun " drugs. My case is very unique, if I hadn't

contracted histoplasmosis, I would probably still be on the Remicade.

I've had a pretty good experience at Mayo Clinic, about my only

complaint is that my doctor minimizes when I want to talk about

diet. He thinks it is great that i manage what I eat and that I

research it, but that's about it.

If anyone has to start Remicade or Humera, make sure you talk with

your doctor about what situations you have to avoid that are high

risk for picking up an infection.

My hope, my goal, is that by adding the SCD component to what I'm

already doing, I can at least delay starting the humera. It should

also help that some huge stressors in my life, from the past year

are finally gone, all i will say is that this past year was horrible.

The details would take a couple more paragraphs, too much for now,

but what I can say that my wife and other people that saw my

situation are amazed that I kept going and didn't quit. I personally

think the stress was a big part of my colon inflammation getting worse.

I've taken enough time, hopefully this helps a little.

Be thankful for every day that we have, be thankful for our family

and friends.

Jim Wolf

[Guest guest]

You've been through a lot. Thanks for sharing your story about the downside of Remicade.Good luck with the SCD, it works wonders. Here's to hoping that things improve for you soon.--

As a senior in college I started having intestinal problems, but I

wasn't formally diagnosed I was diagnosed with Crohn's until about a

year later in 1996, and I was on Imuran for a couple years in the

late 1990s to the early 2000s. I am fortunate to only live 2 1/2

hours from Rochester, Minnesota, and was able to start going to Mayo

Clinic at that time. Every summer since 1996 I have my annual review

at Mayo Clinic.

During that time was was having some flares, would run a fever for a

couple days, and get prescribed a short dose of prednisone to help

get it back under control. In August if 2004 I had a bowel

obstruction, and fortunately it was resolved with no surgery, but did

have a hospital stay for a couple days and was on a liquid then soft

diet for about 6 weeks.

After the obstruction, two variables were changed in my life. First,

my GI doctor started me on Remicade (more on Remidace after diet).

Second, I started to research how diet could affect Crohn's (and

other digestive conditions such as ulcerative colitis). I did get

better, but I think it was a combination of both the Remicade and

changing my diet. At that time, my reference was, and still is, The

New Eating Right For a Bad Gut by Scala. Since then, what I've

discovered both from reading the book and trial and error that I have

to manage my diet, much like a diabetic has to manage his or her

diet. When I stick to my safe foods, I'm good. If I eat some foods

that I shouldn't then the next day, it's a bad day with a lot of time

in the bathroom. Scala's diet isn't as strict as the SCD for carbs.

Basically it's staying away from spicy, fatty and other foods that

are difficult for the body to digest. Fish. fish oil and flaxseed

oil are good because of their anti-inflammatory properties. My wife

has arthritis, and is starting to go gluten-free as she thinks she's

gluten sensitive, and I'm starting to read more about SCD so I can

further modify my diet. The other diet strategy I've used is to drink

Ensure (and the cheaper Wal-mart brand Equate) daily as a diet

supplement- this allows me to eat less food and lower the digestive

load on my colon.

On to Remicade, it was working well until I contracted a lung

infection in November of 2007- histoplasmosis (it used to be called

the bird flu) Because of my compromised immune system, it ended up

spreading and going systemic, a " normal " person would have had flu-

like sys-toms for a couple days and been finished . My local

hospital shipped me up to Rochester to Mayo Clinic/St. 's

Hospital, and I was up there for almost three weeks. Ran fevers of

102+ and to make a long story short, was miserable. Lost 30 pounds,

and during a check-up later a Mayo Doctor told me that if I hadn't

been a healthy 35 year old, I would have died. The silver lining was

that as sick as I was, my Crohn's didn't flare up. I was taken off

the Remicade, but to kill the infection ended up on an antibiotic for

a year-- it was a fungal infection and it's a lot harder to kill a

fungus than a bacteria. It turned out that I was inly the 4th person

that Mayo Clinic knew about to experience this specific infection

after being on Remicade. That's the short version...

Had my annual Mayo visit and my doctor wants to start me on Humera,

but I'm not very excited, as it also lowers the immune system as a

side-effect of lowering the inflammation in my small intestine. But

in the end I may not have a choice since my CT scan showed a

progression of inflammation but it's less invasive than the other

option of a surgical colon resection. There are other people that

have discontinued Remicade and started Humera, so that's encouraging.

My understanding from living with Crohn's for over a decade is that

Imuran (and Flagyl, etc.) are first line drugs, the if they don't

work to manage the inflammation of a Crohn's or UC then Remicade and

humera are the " big gun " drugs. My case is very unique, if I hadn't

contracted histoplasmosis, I would probably still be on the Remicade.

I've had a pretty good experience at Mayo Clinic, about my only

complaint is that my doctor minimizes when I want to talk about

diet. He thinks it is great that i manage what I eat and that I

research it, but that's about it.

If anyone has to start Remicade or Humera, make sure you talk with

your doctor about what situations you have to avoid that are high

risk for picking up an infection.

My hope, my goal, is that by adding the SCD component to what I'm

already doing, I can at least delay starting the humera. It should

also help that some huge stressors in my life, from the past year

are finally gone, all i will say is that this past year was horrible.

The details would take a couple more paragraphs, too much for now,

but what I can say that my wife and other people that saw my

situation are amazed that I kept going and didn't quit. I personally

think the stress was a big part of my colon inflammation getting worse.

I've taken enough time, hopefully this helps a little.

Be thankful for every day that we have, be thankful for our family

and friends.

Jim Wolf