Re: Back on the Prednisone again :(

[Guest guest]

One thing that helped me was making this thing called "Basco Broth". It is a purreed chicken soup. Recipe in a book called "restoring your digestive health' all items are legal for SCD. i ate it morning noon and night. which gets SERIOUSLY old but it did turn around my last flare up.

good luck!

To: BTVC-SCD From: aiazeen@...Date: Sat, 31 Jan 2009 20:38:23 +0000Subject: Back on the Prednisone again

CURRENT STATUSSo after just a little over a month of tapering off of 20 mg ofPrednisone, I went a week without Prednisone and started 4.5 LDN sevendays ago and things have gotten worse. BMs started to increase andfor the last three days I have felt fluish and fatigued I am solimited on foods it's not even funny. I keep a food journal and nowit seems just about everything is irritating my system. Seven visitsto the loo since midnight with bleeding and "tissue" I reluctantlychoked down 5 mg of Prednisone and took a Canasa suppository. Itreally feels like the immune system does not want to quiet down inspite of what I do. Most of my issues are between 6 pm and 1 am. I amreally surprised that 2.5-5 mg of Prednisone can make so much of adiffererence and mask so much - I was up to about 30 items on my foodlist where as now it's seven!!!STRATEGY:In a nutshell my daily staples will be, brined chicken with garlic,pork loin (salt pepper seasoning only), Salmon (olive oil, salt andpepper only)ripe banana and pureed zucchini...I will hold off on weekcoffee for several days even though I drink in the morning and do notseem to have issue with it. My problems come at night afet 6pm and Idrink coffee usually between 8-10 (one to two cups). From here I willdo slow introductions. I am holding off on the yogurt because I thinkthis also was causing a problem and need to intro again slowly to seeif I notice a change. All foods are screened for illegals and containnone.QUESTION: Any other suggestions? Has anyone else experienced such achallenge at six months into the diet - it sure would be comforting toknow that this is not uncommon and the duration of almost a two month,intense flare is "normal" at six monthsMEDICINE Just started the LDN - no improvement noted - actually symptoms gotworse but I think due to completely dropping the Prednisone. Will givethe LDN a shot for two months. QUESTION: What has been other's experience of improvement on LDN andthe time frame to get there?I am on the Prednisone for 5 mg and will try to taper as soon aspossible - with a luck on the further limitations I am putting into mydiet I am hoping that will be within a week. A had a really bad flarepre-scd while taking an on going Asacol med at 400 mg/day and thenincreasing to 800 mg a day when things got really bad. so i questionof it helps at all I contemplate getting back on this as it hasillegal binders in it? I am allergic to the Asulfasene that dr.Present suggests - even the slow into of this drug I ended up gettinghives.QUESTION Have others had success taking Asacol while on SCD at least afirst? Will this really hinder the healing process? I am told that acompounding pharmacy cannot sparate the binders.Someone also mentioned Entocort – an alternative to Prednizone? QUESTION? Does anyone have experience with this drug?FYI: Just for giggles I am going in for a CDif test to rule out anyremote possibility that there is some sort of bacterial issue. I alsojust finished a monthly cycle. While I have heard periods canintensify a flare I would have expected them to calm down after "auntflow" left.Any other suggestions to help in this struggle - I am doing everythingI can religiously and I am still having such issues. (Big Sigh)Thanks advance for your helpaiazeenSCD 6 moUC 5.75 yrsPrednisone 5 mgLDN 7 day newby 4.5 mg/night Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

[Guest guest]

Because you say your symptoms are after 6pm I really think it's because you tapered too quickly off the prednisone. Going from 20 mgs to 0 in one month is very fast. This last time I tapered from 20 mgs I only reduced 2.5 mgs every two weeks and stayed on 2.5 for a month because it was really hard to completely quit without the extreme fatigue in the evenings and the aches which increased until 2am when cortisol is released in the body. I think your body is just slow in restarting the cortisol production again. Read up on adrenal fatigue and adrenal crisis and maybe talk to a good endocrinologist to get the adrenals functioning again. Let us know how you are doing.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD Sent: Saturday, January 31, 2009 9:38:23 PMSubject: Back on the Prednisone again

CURRENT STATUSSo after just a little over a month of tapering off of 20 mg ofPrednisone, I went a week without Prednisone and started 4.5 LDN sevendays ago and things have gotten worse. BMs started to increase andfor the last three days I have felt fluish and fatigued I am solimited on foods it's not even funny. I keep a food journal and nowit seems just about everything is irritating my system. Seven visitsto the loo since midnight with bleeding and "tissue" I reluctantlychoked down 5 mg of Prednisone and took a Canasa suppository. Itreally feels like the immune system does not want to quiet down inspite of what I do. Most of my issues are between 6 pm and 1 am. I amreally surprised that 2.5-5 mg of Prednisone can make so much of adiffererence and mask so much - I was up to about 30 items on my foodlist where as now it's seven!!!STRATEGY:In a nutshell my daily staples will be, brined

chicken with garlic,pork loin (salt pepper seasoning only), Salmon (olive oil, salt andpepper only)ripe banana and pureed zucchini...I will hold off on weekcoffee for several days even though I drink in the morning and do notseem to have issue with it. My problems come at night afet 6pm and Idrink coffee usually between 8-10 (one to two cups). From here I willdo slow introductions. I am holding off on the yogurt because I thinkthis also was causing a problem and need to intro again slowly to seeif I notice a change. All foods are screened for illegals and containnone.QUESTION: Any other suggestions? Has anyone else experienced such achallenge at six months into the diet - it sure would be comforting toknow that this is not uncommon and the duration of almost a two month,intense flare is "normal" at six monthsMEDICINE Just started the LDN - no improvement noted - actually symptoms

gotworse but I think due to completely dropping the Prednisone. Will givethe LDN a shot for two months. QUESTION: What has been other's experience of improvement on LDN andthe time frame to get there?I am on the Prednisone for 5 mg and will try to taper as soon aspossible - with a luck on the further limitations I am putting into mydiet I am hoping that will be within a week. A had a really bad flarepre-scd while taking an on going Asacol med at 400 mg/day and thenincreasing to 800 mg a day when things got really bad. so i questionof it helps at all I contemplate getting back on this as it hasillegal binders in it? I am allergic to the Asulfasene that dr.Present suggests - even the slow into of this drug I ended up gettinghives.QUESTION Have others had success taking Asacol while on SCD at least afirst? Will this really hinder the healing process? I am told that acompounding

pharmacy cannot sparate the binders.Someone also mentioned Entocort – an alternative to Prednizone? QUESTION? Does anyone have experience with this drug?FYI: Just for giggles I am going in for a CDif test to rule out anyremote possibility that there is some sort of bacterial issue. I alsojust finished a monthly cycle. While I have heard periods canintensify a flare I would have expected them to calm down after "auntflow" left.Any other suggestions to help in this struggle - I am doing everythingI can religiously and I am still having such issues. (Big Sigh)Thanks advance for your helpaiazeenSCD 6 moUC 5.75 yrsPrednisone 5 mgLDN 7 day newby 4.5 mg/night

[Guest guest]

I agree that 20-0mg in 1 month seems awfully fast. I'm currently at 20mg of

prednisone

now and my endocrinologist has me decreasing by 2.5mg every 10 days until I get

to 10mg.

Then I'll decrease by 1mg every 10 days until I get to 5mg. Finally I'll

decrease by 0.5 mg

every 10 days until I get to 0mg. The whole thing will take just over 6 months!

I am hesitant to start / resume, however, as I'm in a similar position. I hit

20mg in mid-

December and since then I feel I've been in a flare. (November was a great

month, though!)

I've gone from 3 fairly formed BMs per day to D about 8 times per day. I fear

prednisone may

have been masking intolerances, but I'm still at 20mg, so shouldn't it still be?

Anyway, I was

eating all meats, zucchini, bananas and yogurt, but have now gone back to intro

since last

night - nothing but broiled chicken and chicken stock in hopes of getting back

on track.

Hang in there, and share what works! I'll look forward to your progress, and

others' advice!

-Sal

UC - May-07

SCD - Oct-08

[Guest guest]

Most people that take LDN for crohn's/uc notice the most improvement

between two and three months so you would have a way to go yet to

notice benefits. I have been on LDN full dose for a little over two

months and just stopped the pred a week ago. Things seem to be a

little unsettling but I figurred with going off the pred entirely it

may take a while. It takes me a week or so for things to calm down

each month after my friend leaves.

You may also have the flu bug or something going on as well. You can

take up to 20mgs of pred for a short time and taper over several

weeks or possibly think of staying on low 5 or 2.5mgs for a while.

You may want to do 20 for a week, then taper down 5 per week then

stay at a low dose.

Asacol made me tremendously worse so can't help you out there, won't

take that again. I took it for a month and then ended up in the

hospital for twelve days in really bad shape.

Good luck,

Miss

>

> CURRENT STATUS

> So after just a little over a month of tapering off of 20 mg of

> Prednisone, I went a week without Prednisone and started 4.5 LDN

seven

> days ago and things have gotten worse. BMs started to increase and

> for the last three days I have felt fluish and fatigued I am so

> limited on foods it's not even funny. I keep a food journal and now

> it seems just about everything is irritating my system. Seven

visits

> to the loo since midnight with bleeding and " tissue " I reluctantly

> choked down 5 mg of Prednisone and took a Canasa suppository. It

> really feels like the immune system does not want to quiet down in

> spite of what I do. Most of my issues are between 6 pm and 1 am. I

am

> really surprised that 2.5-5 mg of Prednisone can make so much of a

> differerence and mask so much - I was up to about 30 items on my

food

> list where as now it's seven!!!

>

> STRATEGY:

> In a nutshell my daily staples will be, brined chicken with garlic,

> pork loin (salt pepper seasoning only), Salmon (olive oil, salt and

> pepper only)ripe banana and pureed zucchini...I will hold off on

week

> coffee for several days even though I drink in the morning and do

not

> seem to have issue with it. My problems come at night afet 6pm and

I

> drink coffee usually between 8-10 (one to two cups). From here I

will

> do slow introductions. I am holding off on the yogurt because I

think

> this also was causing a problem and need to intro again slowly to

see

> if I notice a change. All foods are screened for illegals and

contain

> none.

>

> QUESTION: Any other suggestions? Has anyone else experienced such

a

> challenge at six months into the diet - it sure would be comforting

to

> know that this is not uncommon and the duration of almost a two

month,

> intense flare is " normal " at six months

>

> MEDICINE

> Just started the LDN - no improvement noted - actually symptoms got

> worse but I think due to completely dropping the Prednisone. Will

give

> the LDN a shot for two months.

>

> QUESTION: What has been other's experience of improvement on LDN

and

> the time frame to get there?

>

> I am on the Prednisone for 5 mg and will try to taper as soon as

> possible - with a luck on the further limitations I am putting into

my

> diet I am hoping that will be within a week. A had a really bad

flare

> pre-scd while taking an on going Asacol med at 400 mg/day and then

> increasing to 800 mg a day when things got really bad. so i question

> of it helps at all I contemplate getting back on this as it has

> illegal binders in it? I am allergic to the Asulfasene that dr.

> Present suggests - even the slow into of this drug I ended up

getting

> hives.

>

> QUESTION Have others had success taking Asacol while on SCD at

least a

> first? Will this really hinder the healing process? I am told

that a

> compounding pharmacy cannot sparate the binders.

>

> Someone also mentioned Entocort – an alternative to Prednizone?

>

> QUESTION? Does anyone have experience with this drug?

>

> FYI: Just for giggles I am going in for a CDif test to rule out any

> remote possibility that there is some sort of bacterial issue. I

also

> just finished a monthly cycle. While I have heard periods can

> intensify a flare I would have expected them to calm down

after " aunt

> flow " left.

>

> Any other suggestions to help in this struggle - I am doing

everything

> I can religiously and I am still having such issues. (Big Sigh)

>

> Thanks advance for your help

>

> aiazeen

> SCD 6 mo

> UC 5.75 yrs

> Prednisone 5 mg

> LDN 7 day newby 4.5 mg/night

>

[Guest guest]

One other suggestion: try one thing at a time. Using both LDN and SCD

will not let you know which is working and which is not. Of course,

given my bias I would vote for SCD alone first to see if it works. And

maybe cut out what you are having at night for a few days to see if

that makes a difference.

a

comfybelly.com

[Guest guest]

> One other suggestion: try one thing at a time. Using both LDN and SCD

> will not let you know which is working and which is not.

Well, no, that's not true.

LDN works best if you are on a diet such as SCD.

They complement each other.

Mara