Elidel and post-steroid rebound
Hi, my name’s Kelly. I’m new here. Have had e all my life. Went to the derm
last week (a new one, I recently moved here) and he took me off my steroid
creams (aclovate, cutivate) and put me on Elidel. I’ve been on the steroid
creams FOREVER, none of my previous derms had ever told me about any
bad side effects or "rebound effect" and my new derm didn’t even warn me
about it. Have been reading up on it on the ‘net for the past few hours. So
three days after being off my steroid regime (used to be twice daily), and on
the Elidel, I’m a MESS. I didn’t even go to work today because I feel and look
so miserable. I haven’t been this bad in 10 years or more.
Sooo….my question is: how long does a rebound last? I mean, are we talking
days or months? Is the Elidel supposed to help with a rebound at all? I tried to
call my derm, or at least a nurse practitioner in the office, and they said the
derm didn’t have time to talk to me, and if I had questions, call the
pharmacist,
because, in her exact words…"that’s what he went to school for, he should be
able to tell you…" She said that since Elidel is so new, they had no notes or
info on it in the office. *What?!?* They’ll prescribe it, but they don’t know
anything about it?!?!
Sorry for ranting. I’m so mad, and miserable. I thought I’d never be this bad
off
again in my lifetime, and here I am again.
Anyway…any thoughts on "rebound" timelines?
Thanks so much for listening.
–Kelly
April 7th, 2004 at 3:00 pm
Dear Kelly,
Elidel and rebound.
You poor darling! I wonder if you could find anything on the
internet about wthdrawing gradually from steroids? Maybe you shold try a
course of s. pills which reduce over the course of a couple of weeks or so.
I am not an expert but I think it is usual to come off drugs by degrees so
that the withdrawal is easier. Your doctor should really be more helpful.
Love Jan
April 7th, 2004 at 11:08 pm
I’m new here, just joined last night (I have an almost-3-year-old with
horrible eczema), and haven’t even introduced myself. But I’m going to
put my two cents worth in here anyway: get a new dermatologist! The way
you were treated is absolutely unaccceptable. And I’d be afraid of
anyone who prescribed a medicine without knowing anything about it.
Becky
April 8th, 2004 at 11:01 am
Hi Kelly, I had read ur email and I have an advice for
you, you must resume corticosteroid creams and then
start to take them in less quantities until you reach
the minimum use and then re-start elidel. Elidel isn’t
the problem, the problem is that you were on a high
dosis of cortisone before starting elidel adn u
supressed cortisone at once.
I had a rebounce a few years ago and the doctor
"normalize" me by taking 6 pills a day of cortisone
and in matter of 2 months decreasing the dose to one
pill every two days.
By the way elidel is a wonder but your doctor
prescribed it before noticing the possiblity of a
cortisone rebound.
Take Care,
Victor Ceron
April 10th, 2004 at 3:33 am
Hello Kelly,
I have also had eczema forever (since age 5). I have
used cortisone pretty much since then. Last April I
went through a "detox" program where I ate mostly
fruits and veggies and at the same time I stopped
using all meds. (I also used asthma medicine and nasal
spray). It was very scary, but I stuck it out. The
second day the left side of my face swelled, the 3rd
day my entire face was swollen, then my whole body
swelled, especially at my elbow and knees. My skin
flaired up - really bad!!! I did a serious of 10
colonics that month too, as well as took psyllium,
wheat grass and a bunch of other cleansing products.
It last for a few months, infact I was f____ed up
through September. BUT at the same time I moved across
the country and was eating all raw food. I believe
that raw foods are the most nutritious, but I also
know that my ancestors have eaten cooked food for a
long time. So perhaps partly raw taken with healthy
cooked food — brown rice, steamed veggies, etc, all
organic, would be a safer and less intense way to go.
So basically from what I know, going off cortisone is
not fun and the symptoms are going to get worse before
they get better. BUT as with all natural healing,
that’s the way it goes………
I didn’t use cortisone for about 6 months but now I
have started using hydrocortisone a 2 or 3 times a
week on small areas when needed.
As my friends’ cell phone says when he turns it
on…"it’s all going to be ok"…..
Namaste,
Shannon