Re: Headaches - etc. reason why I am on this list

[Guest guest]

Hey tte- I am so glad had so much advice and experience to share

with you!! I would have written back, but I cannot relate... I haven't been able

to break under 20mg prednisone in years! That is one of the main reasons I came

to SCD. I am glad showed you a slower way to taper and I really hope you

are feeling better soon! Who knows... maybe by the time I am ready to taper I'll

be coming to you for advice

-Joanna

SCD 9/2009, Crohn's 1992, 22.5mg Prednisone

>

> Thank you . I'm already feeling better having gone down to 15mg.

[Guest guest]

I'm not sure what " ND " is either (naturopath doc?)...

To : I do most of my stuff organic and I love finding others who believe

in it! I figure even if it's not *necessary* (like they say fruits/veggies with

thicker skins are of less concern), I still like supporting the farming methods.

I also only get my meat and dairy from local farmers now. It feels really good

to support the local industry (I live in Ohio).

To tte: Well, I'm not happy to say that I've been able to be on prednisone

for so long, it's just been how my personal journey has played out. 18 years ago

when I was diagnosed I was put on HUGE doses (80mg oral- can you imagine? I was

17 years old and weighed 85lbs... I would never allow that now). I've never been

able to totally ween off. Not because of my body being dependent on it, but

because every time I dip below 20mg my symptoms get worse. My doctors have

always felt that it would be better to stay on 20 for long term than to have

worse symptoms. At this point, I just want to be off it- I've suffered every

possible side effect and my bones aren't going to just up and get better on

their own.

tte, you asked about Humira? I think a lot of people here have tried it and

had some success. If it can help you get off the prednisone, I think it's worth

a shot. I have tried just about every medication: Asacol, 6mp, Remicade, Humira,

Cimzia, Methotrexate. Most seem to help me for about 3-6 months and then I just

return to my normal baseline of diarrhea and bleeding.

's advice about going slow is really dead on. So what if it takes 2 months

to go down from 20 to 15? Just take your time And I think the fact that you

are implementing SCD is going to help you win this fight and get off of it!

-Joanna

SCD 9/2009, Crohn's 1992, 22.5mg Prednisone

>

> What's an ND? I can't do prednisone more than 15 mg. I'm trying to

> find something else. Can Humira stop flares? I'm not eating veggies

> right now but I do try to eat organic.

[Guest guest]

I'd like to just add one thing about decreasing prednisone. Now, I'm not

on prednisone and I don't think I've ever had it, but I have been on

hydrocortisone most of my life and it's unlikely I will ever get off it.

But there have been a few periods where I could decrease it. When I

did, I had to decrease something like 1.5mg per MONTH.

And my doctor says my

hydrocortisone is something like one seventh as strong as

Prednisone. In other words, I was decreasing practically molecule

by molecule but it was the only way I could make it work. So what

I'm really trying to say is, I don't think there's any such thing as

decreasing too slowly, really. My nurse friend says to make changes to

meds so slowly the body doesn't realize you are doing it. So, I

would recommend next time you decrease, do it much much slower and see if

that will go more smoothly. I'd go back up now, if it were me.

What's an ND? I can't do prednisone more than 15 mg. I'm trying

to > find something else. Can Humira stop flares? I'm not eating

veggies > right now but I do try to eat organic.