RE: Need to pick your brains

[Guest guest]

Sounds like your prednisone dose may be to low for your condition right now.

I know you are not thrilled about what your doctor may say or suggest but I

believe it is in your best interest to get well. You can always taper down

again with the steroids. Who knows he may have another plan for you. Sharon who

received her 3rd injection today.

[Guest guest]

I completely understand wanting to get off the prednisone but

remember that it can be lifesaving even with the adverse effects.

Even though you're worried that if you call your doctor and tell him

what's going on he will tell you to bump up the prednisone, you

should call him and then follow his instructions. It sounds like

you've just been through a very serious bout and it may take some

backtracking onto higher doses of prednisone to get back to an

acceptable baseline. If it were me, I'd just tear my hair out (LOL)

and then do what I have to do to be as well as possible, knowing that

there will be time for backing down again on the prednisone after the

lungs have had a chance to heal better.

Also, when you are prednisone dependent as you are, it can take a

long time after an illness to gradually back down on the prednisone.

While you're on prednisone, your adrenal glands lose some or all of

their own ability to produce cortisol (natural steroid) that it needs

to help fight crises (infections, stress) and just manage everyday

life. So it becomes harder to back off the prednisone because you

adrenal glands aren't kicking in efficiently to take over their usual

steroid production. This is called adrenal suppression or adrenal

insufficiency and it can be managed with extra steroids but its

tricky.

Hang in there and please work closely with your doctor to be as well

as you can be at any given time. Give yourself the gift of great

patience and focus on where you want to be eventually. Wishing you

well,

Fran

--- In , " ronaldcrpntr " <cowtrail@...>

wrote:

>

> I have been on a maintenance dose of Prednizone of 10 mg for

approximately one year, 20

> mg the previous year (Xolair for one year). Occasionally if I get

sick I will get the 40 mg 5

> days, 30mg 5 days, 20 mg 5 days, etc, back down to 10mg. I am very

sensitive to

> prednizone, think I have all the adverse effects. After being in

the hospital in intensive care

> with influenza (I have been out for a month) my Dr told me I could

try going to 5 mg, even

> though he didn't think I would be able to. I am still weak from the

hospital stay, apparently I

> almost died, but, I have been on 5 mg prednizone for 1 1/2 weeks

and I am having a hard

> time breathing or catching my breath (the rest of the stuff does

not bother me but I do like

> to breath). I thought I would " settle down " by now. I do not know

if it is from being sick (DR

> said it would take 3-4 months to get back to normal) or the lower 5

mg. I do not know if I've

> given it enough time. If I call the DR he will just say, not a

problem, go back to 10 mg and

> we'll try it later (I really want to get off of Prednizone!).

> I had hoped that when I took my Xolair shots things would be good

again, but no such luck, I

> still have a shortness of breath.

> I would appreciate any input

> Ron

>

[Guest guest]

hi ron,

i've never been pred-dependant, but have been on it for weeks or months at a

time, and had a hard time coming off it. the drop from 10 to 5 might just be too

much for your body to do all at once. is it possible for your dr to give you

5mg pills so you can drop by 2.5, and hang in at 7.5 for a few weeks, and then

drop to 5?

are you on an inhaled steroid (ICS)? maybe you can increase that to get you over

the hump? when i'm on high doses of an ICS (like, 2200 mcg of flovent a day), i

get systemic effects like i would on pred, but its a bit easier to step down

from ICS (in my opinion). you might not need to raise it that much though...

i know carrie is stepping down from her pred, so maybe she has more words of

wisdom.

and i agree, breathing is one of those habits i'd like to keep too!!

heather

ronaldcrpntr <cowtrail@...> wrote:

I have been on a maintenance dose of Prednizone of 10 mg for approximately one

year, 20

mg the previous year (Xolair for one year). Occasionally if I get sick I will

get the 40 mg 5

days, 30mg 5 days, 20 mg 5 days, etc, back down to 10mg. I am very sensitive to

prednizone, think I have all the adverse effects. After being in the hospital in

intensive care

with influenza (I have been out for a month) my Dr told me I could try going to

5 mg, even

though he didn't think I would be able to. I am still weak from the hospital

stay, apparently I

almost died, but, I have been on 5 mg prednizone for 1 1/2 weeks and I am having

a hard

time breathing or catching my breath (the rest of the stuff does not bother me

but I do like

to breath). I thought I would " settle down " by now. I do not know if it is from

being sick (DR

said it would take 3-4 months to get back to normal) or the lower 5 mg. I do not

know if I've

given it enough time. If I call the DR he will just say, not a problem, go back

to 10 mg and

we'll try it later (I really want to get off of Prednizone!).

I had hoped that when I took my Xolair shots things would be good again, but no

such luck, I

still have a shortness of breath.

I would appreciate any input

Ron

[Guest guest]

Maybe try going down by a smaller dose? Going from 10

to 5mg would kick me. I am decreasing 1 mg a month and

only finding that tolerable.

You can cut the pills or use 1 mg ones.

ps I feel for you. I was told I need to pack up and

move to Arizona if I want my life back. Am now having

evil thoughts about my GP and her suggestion.

__________________________________________________

[Guest guest]

Ron,

Maybe you have underlying COPD or something else going on that Asthma &

Allergies are not the only problem. Call your doctor & suggest 7.5 mg for a

month, then try 5mg again. Since you have been on Prednisone so long, you may

need a very lengthy taper. You may need to go to 9 then 8 then 7 etc... Some

people can taper by 2.5, that is why I suggested 7.5. If you still feel you

can't breathe well enough maybe the 9 then 8 regimen is better for you. We are

all unique human beings so what works for one may not work for all. Xolair is

continuing to bind the IgE but if you are in the same environment to keep

building high levels, it just may take longer for you.

Call the doc & discuss it. Take care & feel better. Pat

---------------------------------

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

I have a question.

I have seen many of you talking about COPD and asthma as if they are the

same. I don't think they are exactly the same. I believe you can have

asthma whtihout having COPD; and probably have COPD without having

asthma. I understand that COPD is much more life threatning that

asthma. Is there anyone online that can straighten out my thinking on

this?

________________________________

From: [mailto: ]

On Behalf Of MommaA

Sent: Friday, March 17, 2006 1:51 PM

Subject: Re: [ ] Need to pick your brains

Ron,

Maybe you have underlying COPD or something else going on that Asthma

& Allergies are not the only problem. Call your doctor & suggest 7.5 mg

for a month, then try 5mg again. Since you have been on Prednisone so

long, you may need a very lengthy taper. You may need to go to 9 then 8

then 7 etc... Some people can taper by 2.5, that is why I suggested

7.5. If you still feel you can't breathe well enough maybe the 9 then 8

regimen is better for you. We are all unique human beings so what works

for one may not work for all. Xolair is continuing to bind the IgE but

if you are in the same environment to keep building high levels, it just

may take longer for you.

Call the doc & discuss it. Take care & feel better. Pat

---------------------------------

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Hi Ron:

I was once on a hormone medication that I wanted to get down to the lowest

dose possible. Unfortunately, it caused too much of a reaction to go directly

to the lowest dose, so the office nurse told me that proved I wasn't tolerating

it and had to stay on the higher dose. As an RN, I am aware of the shock to the

system by immediately cutting your medication dose in half, so I weaned myself

down gradually over several months. I went to the half-strength dose for one

day in 2 weeks and the full strength the rest of the days, then I cut to the

half dose once a week for a few weeks to allow my body to adjust, then twice a

week, and really gradually eased in the half-strength tablet and cut out the

full strength tablet. I had absolutely no side effects doing it that way and

reported that to my doctor at my next annual visit. This is not meant as

medical advice for you but just as an example of how one person handled cutting

down on a difficult drug.

Carol

Ron wrote:

I have been on a maintenance dose of Prednizone of 10 mg for approximately one

year, 20

mg the previous year (Xolair for one year). Occasionally if I get sick I will

get the 40 mg 5

days, 30mg 5 days, 20 mg 5 days, etc, back down to 10mg. I am very sensitive

to

prednizone, think I have all the adverse effects. After being in the hospital

in intensive care

with influenza (I have been out for a month) my Dr told me I could try going

to 5 mg, even

though he didn't think I would be able to. I am still weak from the hospital

stay, apparently I

almost died, but, I have been on 5 mg prednizone for 1 1/2 weeks and I am

having a hard

time breathing or catching my breath (the rest of the stuff does not bother me

but I do like

to breath). I thought I would " settle down " by now. I do not know if it is

from being sick (DR

said it would take 3-4 months to get back to normal) or the lower 5 mg. I do

not know if I've

given it enough time. If I call the DR he will just say, not a problem, go

back to 10 mg and

we'll try it later (I really want to get off of Prednizone!).

I had hoped that when I took my Xolair shots things would be good again, but

no such luck, I

still have a shortness of breath.

I would appreciate any input

[Guest guest]

Dear Ron:

I'm sorry to hear you're having so much trouble.. You really don't seem like

you have improved on the Xolair. Could you be around something that is causing

this problem? Example, when I was working (now retired) I worked in a city

college and they decided to do over all of the roofs on all of the buildings ,

about 15, well my asthma was so bad and since then I've improved but, I have

not come back to what I was.

Check out your environment????

kathy

ronaldcrpntr <cowtrail@...> wrote:

I have been on a maintenance dose of Prednizone of 10 mg for approximately one

year, 20

mg the previous year (Xolair for one year). Occasionally if I get sick I will

get the 40 mg 5

days, 30mg 5 days, 20 mg 5 days, etc, back down to 10mg. I am very sensitive to

prednizone, think I have all the adverse effects. After being in the hospital in

intensive care

with influenza (I have been out for a month) my Dr told me I could try going to

5 mg, even

though he didn't think I would be able to. I am still weak from the hospital

stay, apparently I

almost died, but, I have been on 5 mg prednizone for 1 1/2 weeks and I am having

a hard

time breathing or catching my breath (the rest of the stuff does not bother me

but I do like

to breath). I thought I would " settle down " by now. I do not know if it is from

being sick (DR

said it would take 3-4 months to get back to normal) or the lower 5 mg. I do not

know if I've

given it enough time. If I call the DR he will just say, not a problem, go back

to 10 mg and

we'll try it later (I really want to get off of Prednizone!).

I had hoped that when I took my Xolair shots things would be good again, but no

such luck, I

still have a shortness of breath.

I would appreciate any input

Ron

[Guest guest]

Interesting. I work at an old facility built in 1926, they re-roofed

several buildings. The molds there have to be horrendous, plus we

have a K-9, one of my other problems.

I am doing better and without the Xolair I would be belly up! The Dr

saw me today and was amazed at how much better I am doing, he stated

he did not expect someone with influenza and pneumonia to recover so

fat, this is the first time I'm hearing about the pneumonia part, I

hate that.

Ron

On Mar 20, 2006, at 3:32 PM, kathy eisen wrote:

> Dear Ron:

>

> I'm sorry to hear you're having so much trouble.. You really

> don't seem like you have improved on the Xolair. Could you be

> around something that is causing this problem? Example, when I was

> working (now retired) I worked in a city college and they decided

> to do over all of the roofs on all of the buildings , about 15,

> well my asthma was so bad and since then I've improved but, I have

> not come back to what I was.

>

> Check out your environment????

>

>

> kathy

>

> ronaldcrpntr <cowtrail@...> wrote:

> I have been on a maintenance dose of Prednizone of 10 mg for

> approximately one year, 20

> mg the previous year (Xolair for one year). Occasionally if I get

> sick I will get the 40 mg 5

> days, 30mg 5 days, 20 mg 5 days, etc, back down to 10mg. I am very

> sensitive to

> prednizone, think I have all the adverse effects. After being in

> the hospital in intensive care

> with influenza (I have been out for a month) my Dr told me I could

> try going to 5 mg, even

> though he didn't think I would be able to. I am still weak from the

> hospital stay, apparently I

> almost died, but, I have been on 5 mg prednizone for 1 1/2 weeks

> and I am having a hard

> time breathing or catching my breath (the rest of the stuff does

> not bother me but I do like

> to breath). I thought I would " settle down " by now. I do not know

> if it is from being sick (DR

> said it would take 3-4 months to get back to normal) or the lower 5

> mg. I do not know if I've

> given it enough time. If I call the DR he will just say, not a

> problem, go back to 10 mg and

> we'll try it later (I really want to get off of Prednizone!).

> I had hoped that when I took my Xolair shots things would be good

> again, but no such luck, I

> still have a shortness of breath.

> I would appreciate any input

> Ron

>

>

>

>

>

>

>

>