Re: Thoughts on Prednisone

[Guest guest]

When I had (note past tense) colitis my doctor wanted to go the whole

Prednisone/ Asacol route. This brilliant GI doctor didn't think there was a

connection between diet and colitis, so he thought the best course of action

was for me to stop breastfeeding my week-old baby and subject myself to

drugs. No way! My brother-in-law tried that--ended up with osteoporosis from

the steroids and without a colon.

My colitis was brought on by antibiotics, which seems to be the case with a

lot of ASD kids. Just like many of the kids, I was able to control the

symptoms with the gfcf diet. Now I can eat anything, but only when I'm

taking a homeopathic remedy. In June I ran out of my remedy and just because

I was busy I didn't get a refill--the colitis came creeping back. It took

almost a month to completely feel normal again.

So in my case, I can get along fine with prednisone or asacol, with either

the gfcf diet or my homeopathic remedy.

I hope you'll explore all other options before giving your child

steroids--they're a vicious cycle that will engender other health problems.

Lynne

> Hunter's Ped GI just recommended that we put Hunter on Prednisone for his

> colitis since the Asacol didn't work. He would start with 7 cc once daily for

> the first week, 5 cc for the second, 3 cc for the third, and 1.5 cc for the

> final week. I'm torn on whether I should try this since nothing seems to help

> him. Prednisone was the only thing that helped me when my back went out so I

> had a good experience with it. Could someone give me some feedback on this.

>

> Jo

> Representative for Unlocking Autism in South Carolina

> www.unlockingautism.org

[Guest guest]

Hi Jo...i'm so sorry to hear about Hunter's suffering...

Lily was on Prednisone during Fall 2000 (Sept-January) during her

Crohn's onset. It did stop her pains for a while (in April they

returned). Side effects: rapid weight gain (she couldn't stop

eating), her face ballooned into typical " hormonal moonface " (which

returned back to normal after she went off prednisone), stretch marks

on her thighs like those in pregnant women...several months

afterwards, during summer 2001, her face, chest and arms got all

covered by discolored and flaky white spots (like a dalmatian in

negative). Someone with medical background told me strictly off the

record that it's a known side effect of prednisone; she was treated

again with prednisone-containing skin ointment. Discoloration

persists for over a year now, worse in summer, better during winter

months.

When her pains returned (20 daily pills of imuran, pentasa and

prilosec did nothing to prevent another flareup), we decided against

prednisone and remicade, and located Chinese doctors of Oriental

medicine who put her on herbal mix that worked great; she takes it on

and off only as needed when her pains return (usually after she

catches a cold or flu). She doesn't take any " mainstream " medications

at the moment. I have a list of those herbs' Chinese and Latin names

(and got no idea of their English equivalents). If you wish, please

feel free to email me in private.

Maybe see if there are any Oriental medicine drs in your area?

Best of luck,

-Lana

> Hunter's Ped GI just recommended that we put Hunter on Prednisone

for his

> colitis since the Asacol didn't work

[Guest guest]

> Hunter's Ped GI just recommended that we put Hunter on Prednisone

for his

> colitis since the Asacol didn't work. He would start with 7 cc once

daily for

> the first week, 5 cc for the second, 3 cc for the third, and 1.5 cc

for the

> final week. I'm torn on whether I should try this since nothing

seems to help

> him. Prednisone was the only thing that helped me when my back went

out so I

> had a good experience with it. Could someone give me some feedback

on this.

It was utterly wonderful for me when I had the allergies from (#$(* & #.

Most doc's seem to be scared of it so they Rx too low a dose for too

long a time. If you are trying to push antibodies down (get rid of B

cells) without massacreing the rest of the immune system very high

initial doses, rapidly tapered, work well. If you want to kill the

rest of the immune system without bothering the antibodies too much

you give modest doses for several weeks.

How many mg per cc, and how much does your kid weigh?

Do you know what is IgE and other Ig levels are? Do you have any

feeling for how much of the colitis is allergic? Do you know anything

about his fatty acids?

Have you tried a lot of vitamin A yet?

>

> Jo

> Representative for Unlocking Autism in South Carolina

> www.unlockingautism.org

>

>

> [Non-text portions of this message have

[Guest guest]

> Lily was on Prednisone during Fall 2000 (Sept-January) during her

> Crohn's onset. It did stop her pains for a while (in April they

> returned). Side effects: rapid weight gain (she couldn't stop

> eating), her face ballooned into typical " hormonal moonface " (which

> returned back to normal after she went off prednisone), stretch

marks

> on her thighs like those in pregnant women...

Very typical prednisone story. Not enough Rx'd (or not enough other

stuff done at same time) so therapy lasts long enough for all the

really sucky side effects to come on because the problems isn't solved

well enough to stop the prednisone.

Like any other powerful tool, it is almost as dangerous in the hands

of someone who is scared of it as in the hands of someone who is

careless.

Andy . . ..

[Guest guest]

> Hunter's Ped GI just recommended that we put Hunter on Prednisone

for his

> colitis since the Asacol didn't work. He would start with 7 cc once

daily for

> the first week, 5 cc for the second, 3 cc for the third, and 1.5 cc

for the

> final week.

Which means he is done with it at the beginning of october, and his

immune system is totally trashed just in time for flu etc. season.

My suggestion is use more for a much shorter period in hopes of

getting the problem under control and getting him well off the steroid

before the inevitable waves of flu, colds, crud and ick go around.

Andy . . . . . .. . . . .

[Guest guest]

> When her pains returned (20 daily pills of imuran, pentasa and

> prilosec did nothing to prevent another flareup), we decided against

> prednisone and remicade, and located Chinese doctors of Oriental

> medicine who put her on herbal mix that worked great; she takes it

on

> and off only as needed when her pains return (usually after she

> catches a cold or flu). She doesn't take any " mainstream "

medications

> at the moment. I have a list of those herbs' Chinese and Latin names

> (and got no idea of their English equivalents). If you wish, please

> feel free to email me in private.

>

> Maybe see if there are any Oriental medicine drs in your area?

There should be. Look for acupunturists. Or look for

" Traditional Chinese Medicine " . Or look for Chinese herb stores.

best wishes,

Moria

[Guest guest]

I am finishing off my lowest dose of prednisone ever. Three days of 20mg and three days of 10mg. It seemed to have worked very well. Before last weekend polyps were visible and I had very bad sleep and cornered the market on Kleenex!!

I try very hard to limit mt prednisone treatments to once every three months.

Hoping this well feeling will continue.

Thoughts on Prednisone

I am interested in you knowledge, thoughts, feelings, about prednisone.

Like many of us, it has become a regular part of the routine of Samters. I was on it from

Thanksgiving to around Christmas (25 day taper starting at 4 mg and going down to 5mg). I

felt great! Around the end of Jan. I lost my sense of smell and couldn't get any air out of my

nose at all. My asthma was out of control as well. I went to the ENT and was full of polyps

again (just had surgery in July).

So I am back on Prednisone. Feel amazing. Can breath and smell and taste.

What amounts do you all take and how often. Has anyone done a sustained, long term very

low dose with any success?

(I also do nasal sprays, daily washes, pulmicort, singular)

Thanks,

Christy

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Maybe Prednisone helps, in significant doses,

but no bed of roses is osteonecrosis.

> From: Ruth Nyce <ranyce@...>

>

> Just read your concern about pred. I was on pred. often for about five years

> because that seemed to be the only thing that would help. I am 64 and last

> Sept & Oct I had 6 vertebrae spinal fractures because of severe osteoporosis.

> It has been quite an ordeal and I've had two surgeries. I've been told the

> severe osteo. occurred because of too much pred. I am on high doses now of

> calcium & vitamin D and Forteo shots daily to build up my bones. Be cautious

> with pred. treatment and talk to your doctor about your bone density. Hope

> this helps~ I wouldn't want anyone to have the compression fracture pain I

> have had.