Re: 12 yr old boy - getting off Prednisone only on SCD

[Guest guest]

At 02:20 PM 7/19/2010, you wrote:

My son was diagnosed in February

with Crohn's desease. On SCD diet since March, tempering off Prednisone

from 30MG to 10MG. Now on 10 can't get out of a flare. Can't tolerate

previously tolerated foods, can't get the stools to normal.

Soon after diagnosis was hospitalized for severe Pentaza allergy so the

next step for us is Remicaid. My feeling right now is that we need help

of another drug. But may be not Remicaid.

If you have any experience with similar situation - please

write.

Here is something I saved from my early days on the Long Island List

which may be helpful for those trying to wean off prednisone:

To those trying a slow prednisone wean,

Since Ben is 9, he sees a pediatric GI who follows an extremely

conservative prednisone weaning schedule that maybe some of you

" older " folks would be interested in. I think this

schedule is typical for kids but I don't know about adults. Of

course, check with your doctor first. It starts when you get down

to 20 mg.

two weeks - alternate 20mg/15mg every other day

two weeks - alternate 20 mg/10mg every other day

two weeks - alternate 20 mg/5mg every other day

two weeks - alternate 20 mg/0 mg every other day

two weeks - 15 mg every other day

two weeks - 10 mg every other day

two weeks - 5 mg every other day

two weeks - 2.5 mg every other day

Be well, Caryl

mom of Ben, Crohn's 1 year, SCD 3 weeks

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

Hi,

I can tell you my experience: I only took 5mg prednisolone during 5 months (33

y.o. female, 1,69cm, 60kg). But it took me 6 weeks to leave it and still had

side effects for another 3 weeks (they started around the 4th week of lowering

the dosis). For my case, Dr. said only if after those 3 weeks I still had

something, then we could consider it to be from my disease and not from the

medicine. Turns out it was from the medicine... Seems like cortisone mimics the

symptoms of the disease when you're trying to leave it.

Wish all the best to your child!

> >My son was diagnosed in February with Crohn's

> >desease. On SCD diet since March, tempering off

> >Prednisone from 30MG to 10MG. Now on 10 can't

> >get out of a flare. Can't tolerate previously

> >tolerated foods, can't get the stools to normal.

> >Soon after diagnosis was hospitalized for severe

> >Pentaza allergy so the next step for us is

> >Remicaid. My feeling right now is that we need

> >help of another drug. But may be not Remicaid.

> >If you have any experience with similar situation - please write.

>

> Here is something I saved from my early days on

> the Long Island List which may be helpful for

> those trying to wean off prednisone:

>

> To those trying a slow prednisone wean,

>

> Since Ben is 9, he sees a pediatric GI who

> follows an extremely conservative prednisone

> weaning schedule that maybe some of you " older "

> folks would be interested in. I think this

> schedule is typical for kids but I don't know

> about adults. Of course, check with your doctor

> first. It starts when you get down to 20 mg.

>

> two weeks - alternate 20mg/15mg every other day

> two weeks - alternate 20 mg/10mg every other day

> two weeks - alternate 20 mg/5mg every other day

> two weeks - alternate 20 mg/0 mg every other day

> two weeks - 15 mg every other day

> two weeks - 10 mg every other day

> two weeks - 5 mg every other day

> two weeks - 2.5 mg every other day

>

> Be well, Caryl

> mom of Ben, Crohn's 1 year, SCD 3 weeks

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

> Babette the Foundling Beagle

>

[Guest guest]

Hi,

I can tell you my experience: I only took 5mg prednisolone during 5 months (33

y.o. female, 1,69cm, 60kg). But it took me 6 weeks to leave it and still had

side effects for another 3 weeks (they started around the 4th week of lowering

the dosis). For my case, Dr. said only if after those 3 weeks I still had

something, then we could consider it to be from my disease and not from the

medicine. Turns out it was from the medicine... Seems like cortisone mimics the

symptoms of the disease when you're trying to leave it.

Wish all the best to your child!

> >My son was diagnosed in February with Crohn's

> >desease. On SCD diet since March, tempering off

> >Prednisone from 30MG to 10MG. Now on 10 can't

> >get out of a flare. Can't tolerate previously

> >tolerated foods, can't get the stools to normal.

> >Soon after diagnosis was hospitalized for severe

> >Pentaza allergy so the next step for us is

> >Remicaid. My feeling right now is that we need

> >help of another drug. But may be not Remicaid.

> >If you have any experience with similar situation - please write.

>

> Here is something I saved from my early days on

> the Long Island List which may be helpful for

> those trying to wean off prednisone:

>

> To those trying a slow prednisone wean,

>

> Since Ben is 9, he sees a pediatric GI who

> follows an extremely conservative prednisone

> weaning schedule that maybe some of you " older "

> folks would be interested in. I think this

> schedule is typical for kids but I don't know

> about adults. Of course, check with your doctor

> first. It starts when you get down to 20 mg.

>

> two weeks - alternate 20mg/15mg every other day

> two weeks - alternate 20 mg/10mg every other day

> two weeks - alternate 20 mg/5mg every other day

> two weeks - alternate 20 mg/0 mg every other day

> two weeks - 15 mg every other day

> two weeks - 10 mg every other day

> two weeks - 5 mg every other day

> two weeks - 2.5 mg every other day

>

> Be well, Caryl

> mom of Ben, Crohn's 1 year, SCD 3 weeks

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

> Babette the Foundling Beagle

>

[Guest guest]

I had to go super strict intro coming off Prednisone and introduce foods very

slowly.

Have you looked into LDN? A lot of people on the list have had a lot of luck

with it. I haven't tried it though.

Misty Kimble

CD - no meds

SCD - Jan 2008

>

> Hello everyone - I am new to the group.

> My son was diagnosed in February with Crohn's desease. On SCD diet since

March, tempering off Prednisone from 30MG to 10MG. Now on 10 can't get out of a

flare. Can't tolerate previously tolerated foods, can't get the stools to

normal.

> Soon after diagnosis was hospitalized for severe Pentaza allergy so the next

step for us is Remicaid. My feeling right now is that we need help of another

drug. But may be not Remicaid.

> If you have any experience with similar situation - please write.

> Thank you, Alla.

>

[Guest guest]

> Hello everyone - I am new to the group.> My son was diagnosed in February with Crohn's desease. On SCD diet > since March, tempering off Prednisone from 30MG to 10MG. Now on 10 > can't get out of a flare. Can't tolerate previously tolerated foods, > can't get the stools to normal.> Soon after diagnosis was hospitalized for severe Pentaza allergy so the > next step for us is Remicaid. My feeling right now is that we need help > of another drug. But may be not Remicaid.> If you have any experience with similar situation - please write.> Thank you, Alla.>LDN works very well for Crohn's (and a host of other auto-immune related conditions, including various cancers); and it has few side effects, none of which are serious or even negative.Your doctor may not know about it, however. (It needs to be compounded by a pharmacy that does that.)  LDN has helped me tremendously (I've had Crohn's for 30 years), as has the diet; but the diet alone wasn't helping me enough. Together they're dynamite. (I've been on both for just over a year and a half.) My husband is also on it for post-polio syndrome (arrests the progression of symptomes, as it does for many people with MS); and we have two cats on it -- one for pancreatitis (he longer vomits and no eats normally) and one for cancer (she's maintaining).  LDN works by causing the body to produce more endorphins, which in turn regulates the immune system. For more details about how it works, and a lot of other info  look at: www.ldnscience.org   There are a number of other links on that page. -- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

I started SCD in 2005 Dec.  I was in a continuous pred up and down cycle.  Couldn't wean off of it without flaring.  I took about six months at least and tapered ever so slowly while starting SCD.  Eventually I was able to get off the prednisone and haven't had to use it for CD since.  Someone may have a schedule for a very slow taper (it's tedious and it's worse than watching grass grow but sometimes it works).  I don't remember how slowly I did it but I had a pill splitter and got it down as far as it would go for like two or more weeks at a time.  I would just stay at one dose until everything stabilized.

 

Check with your doctor, the schedule to taper they gave me was way too fast but I'd been pred dependent about four years at that time.

 

You may also want to check on pecanbread.com which is the children's site although geared towards autism--not totally because everyone goes there but just fyi.

 

Good luck,

Debbie 41 cd

> Hello everyone - I am new to the group.> My son was diagnosed in February with Crohn's desease. On SCD diet

> since March, tempering off Prednisone from 30MG to 10MG. Now on 10 > can't get out of a flare. Can't tolerate previously tolerated foods, > can't get the stools to normal.> Soon after diagnosis was hospitalized for severe Pentaza allergy so the

> next step for us is Remicaid. My feeling right now is that we need help > of another drug. But may be not Remicaid.> If you have any experience with similar situation - please write.> Thank you, Alla.

>LDN works very well for Crohn's (and a host of other auto-immune related conditions, including various cancers); and it has few side effects, none of which are serious or even negative.

Your doctor may not know about it, however. (It needs to be compounded by a pharmacy that does that.)

 

LDN has helped me tremendously (I've had Crohn's for 30 years), as has the diet; but the diet alone wasn't helping me enough. Together they're dynamite. (I've been on both for just over a year and a half.) My husband is also on it for post-polio syndrome (arrests the progression of symptomes, as it does for many people with MS); and we have two cats on it -- one for pancreatitis (he longer vomits and no eats normally) and one for cancer (she's maintaining).  

LDN works by causing the body to produce more endorphins, which in turn regulates the immune system. For more details about how it works, and a lot of other info  

look at: www.ldnscience.org   There are a number of other links on that page. 

--

Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

Thank you Debbie.

Are you only on SCD now?

I am afraid that being only on SCD we will be unstable - will have more flares. And each time it is a set back. Doctor of course recommend 6MP to keep him stable but - my son is so afraid of side effects - he is terrified of drugs bc of his bad allergy to Pentaza.

He feels good on SCD, but recently had a flare. His Prednison is down to 10 from 30.

To: BTVC-SCD Sent: Tue, July 20, 2010 11:03:47 PMSubject: Re: 12 yr old boy - getting off Prednisone only on SCD

I started SCD in 2005 Dec. I was in a continuous pred up and down cycle. Couldn't wean off of it without flaring. I took about six months at least and tapered ever so slowly while starting SCD. Eventually I was able to get off the prednisone and haven't had to use it for CD since. Someone may have a schedule for a very slow taper (it's tedious and it's worse than watching grass grow but sometimes it works). I don't remember how slowly I did it but I had a pill splitter and got it down as far as it would go for like two or more weeks at a time. I would just stay at one dose until everything stabilized.

Check with your doctor, the schedule to taper they gave me was way too fast but I'd been pred dependent about four years at that time.

You may also want to check on pecanbread.com which is the children's site although geared towards autism--not totally because everyone goes there but just fyi.

Good luck,

Debbie 41 cd

On Tue, Jul 20, 2010 at 8:36 PM, n Van Til <rxbach (AT) roadrunner (DOT) com> wrote:

On Mon, 19 Jul 2010 15:20:29 -0400, allaplus4 <azaykin (AT) yahoo (DOT) com> wrote:> Hello everyone - I am new to the group.> My son was diagnosed in February with Crohn's desease. On SCD diet > since March, tempering off Prednisone from 30MG to 10MG. Now on 10 > can't get out of a flare. Can't tolerate previously tolerated foods, > can't get the stools to normal.> Soon after diagnosis was hospitalized for severe Pentaza allergy so the > next step for us is Remicaid. My feeling right now is that we need help > of another drug. But may be not Remicaid.> If you have any experience with similar situation - please write.> Thank you, Alla.>LDN works very well for Crohn's (and a host of other auto-immune related conditions, including various cancers); and it

has few side effects, none of which are serious or even negative.

Your doctor may not know about it, however. (It needs to be compounded by a pharmacy that does that.)

LDN has helped me tremendously (I've had Crohn's for 30 years), as has the diet; but the diet alone wasn't helping me enough. Together they're dynamite. (I've been on both for just over a year and a half.) My husband is also on it for post-polio syndrome (arrests the progression of symptomes, as it does for many people with MS); and we have two cats on it -- one for pancreatitis (he longer vomits and no eats normally) and one for cancer (she's maintaining) .

LDN works by causing the body to produce more endorphins, which in turn regulates the immune system. For more details about how it works, and a lot of other info

look at: www.ldnscience. org There are a number of other links on that page.

--

Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublis hing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

Alla,I thought of another thing that might be a factor at the moment.For a lot of us with IBD, steroids like prednisone can cause anovergrowth of intestinal yeast - because the steroids raise theblood sugar level, making the yeast happy as breeding rabbits - so the yeast level gets crazy high. This can cause a lot of the same symptoms that look like a regular flare. So this may be a factor in what your son is experiencing.We have files on our website for dealing with an overgrowth ofintestinal yeast with SCD and pecanbread.com also has fileson their website. So it may be beneficial for you to read those - just in case thatis the situation now. It is also possible that he is going through a bit of a 3-4month flare - this happens to a lot of people during thattime frame - complicating his getting off of the pred. Mara On Mon, 19 Jul 2010 15:20:29 -0400, allaplus4 <azaykin (AT) yahoo (DOT) com> wrote:> Hello everyone - I am new to the group.> My son was diagnosed in February with Crohn's desease. On SCD diet > since March, tempering off Prednisone from 30MG to 10MG. Now on 10 > can't get out of a flare. Can't tolerate previously tolerated foods, > can't get the stools to normal.> Soon after diagnosis was hospitalized for severe Pentaza allergy so the > next step for us is Remicaid. My feeling right now is that we need help > of another drug. But may be not Remicaid.> If you have any experience with similar situation - please write.> Thank you, Alla.>

[Guest guest]

Hey Alla,

Your son's situation was like mine word for word at one point.

I think Mara gave you some excellent info as well as Marilyn and Debbie about

the Prednisone taper. Maybe now he just needs to go super slow with the taper.

Every time I regress I cannot tolerate once well tolerated foods. It is so

frustrating!

Is your son using any kind of probiotics? Also, maybe lay off on the diary for

now. Not a must just an idea though.

I too had a pentasa allergy.. I eventually had to go on Remicade.

I would totally look into LDN..

Hang in there and keep asking questions..

Jodi

>

> Hello everyone - I am new to the group.

> My son was diagnosed in February with Crohn's desease. On SCD diet since

March, tempering off Prednisone from 30MG to 10MG. Now on 10 can't get out of a

flare. Can't tolerate previously tolerated foods, can't get the stools to

normal.

> Soon after diagnosis was hospitalized for severe Pentaza allergy so the next

step for us is Remicaid. My feeling right now is that we need help of another

drug. But may be not Remicaid.

> If you have any experience with similar situation - please write.

> Thank you, Alla.

>

[Guest guest]

Thank you all for such excellent advice.

Today he developed red spots on his legs and some weird muscle pain. I have a feeling it is related to Crohn's - what is it?

To: BTVC-SCD Sent: Wed, July 21, 2010 5:35:35 PMSubject: Re: 12 yr old boy - getting off Prednisone only on SCD

Hey Alla,Your son's situation was like mine word for word at one point.I think Mara gave you some excellent info as well as Marilyn and Debbie about the Prednisone taper. Maybe now he just needs to go super slow with the taper.Every time I regress I cannot tolerate once well tolerated foods. It is so frustrating!Is your son using any kind of probiotics? Also, maybe lay off on the diary for now. Not a must just an idea though.I too had a pentasa allergy.. I eventually had to go on Remicade.I would totally look into LDN..Hang in there and keep asking questions..Jodi>> Hello everyone - I am new to the group.> My son was diagnosed in February with Crohn's desease. On SCD diet since March, tempering

off Prednisone from 30MG to 10MG. Now on 10 can't get out of a flare. Can't tolerate previously tolerated foods, can't get the stools to normal. > Soon after diagnosis was hospitalized for severe Pentaza allergy so the next step for us is Remicaid. My feeling right now is that we need help of another drug. But may be not Remicaid.> If you have any experience with similar situation - please write.> Thank you, Alla.>

[Guest guest]

Heya Alla,

The red bumps are extraintestinal manifestations of Crohn's Disease.

It basically is showing the inflammatory process.

I suspect it is his joints hurting him?

Does the rash hurt him at all or no? There are a couple of different bumps CD

peeps get..

Jodi

> >

> > Hello everyone - I am new to the group.

> > My son was diagnosed in February with Crohn's desease. On SCD diet since

March,

> >tempering off Prednisone from 30MG to 10MG. Now on 10 can't get out of a

flare.

> >Can't tolerate previously tolerated foods, can't get the stools to normal.

> >

> > Soon after diagnosis was hospitalized for severe Pentaza allergy so the next

> >step for us is Remicaid. My feeling right now is that we need help of another

> >drug. But may be not Remicaid.

> > If you have any experience with similar situation - please write.

> > Thank you, Alla.

> >

>

[Guest guest]

For the weird muscle pains, have him take long soaking epsom baths to relieve

it.

Mara

> Heya Alla,

>

> The red bumps are extraintestinal manifestations of Crohn's Disease.

> It basically is showing the inflammatory process.

> I suspect it is his joints hurting him?

> Does the rash hurt him at all or no? There are a couple of different bumps CD

peeps get..

>

> Jodi

>

>

>>

>> Thank you all for such excellent advice.Â

>> Today he developed red spots on his legs and some weird muscle pain. I have

a

>> feeling it is related to Crohn's - what is it?

[Guest guest]

I had horrible joint pains when trying to ween from intravenous to oral

steroids. I'm sure some people could get them just trying to ween off them

completely. And I don't know Crohn's symptoms but I do know when you're coming

of Prednisone your body suddenly starts to react to other stuff because it

doesn't have the prednisone masking the effects anymore. It's not the same

thing but to give you an example, when I came off pred I broke out all over my

forehead for several weeks (after having it be perfectly smooth for years!), I

was fairly horrified. I also suddenly started reacting to products I'd been

using for years. It turns out I was allergic to them but since I was on

prednisone I didn't suffer any ill effects until I started weening off. It's a

hell of a drug

Stacey

> >

> > Hello everyone - I am new to the group.

> > My son was diagnosed in February with Crohn's desease. On SCD diet since

March,

> >tempering off Prednisone from 30MG to 10MG. Now on 10 can't get out of a

flare.

> >Can't tolerate previously tolerated foods, can't get the stools to normal.

> >

> > Soon after diagnosis was hospitalized for severe Pentaza allergy so the next

> >step for us is Remicaid. My feeling right now is that we need help of another

> >drug. But may be not Remicaid.

> > If you have any experience with similar situation - please write.

> > Thank you, Alla.

> >

>

[Guest guest]

There is something called Pyoderma Gangrenosum that people with crohn's can get.

My old GI always looked at my legs to make sure I didn't have it. Here's a link

with some info:

http://www.cnn.com/HEALTH/library/pyoderma-gangrenosum/DS00723.html

Signs and symptoms of pyoderma gangrenosum include:

* Initially, one or more small, red bumps on your skin that resemble spider

bites

* Painful, open sores (ulcers) with reddish-purple borders

* Achy joints or pain in your bones

* General feeling of unwellness (malaise)

The ulcers usually appear on your legs, but may develop anywhere on your body.

If you have several ulcers, they may grow and merge into one larger ulcer.

When to see a doctor

Talk to your doctor if you develop unexplained blistering on your skin, an itchy

rash or a sore that's slow to heal.

Holly

Crohn's

SCD 12/01/08

>

> Thank you all for such excellent advice. 

> Today he developed red spots on his legs and some weird muscle pain.  I have

a

> feeling it is related to Crohn's - what is it?

>

>