Re: predisone or Ibuprofen

[Guest guest]

Ack, Deb... I'm sorry to hear they're considering either of these for

. What's their reasoning behind it? And do you know what IV

antibiotics they're going to prescribe?

has only had prednisone one time, and that was enough for us!

His doctor threw him on 60 mg. a day for seven days -- no tapering on

or off. What a huge mistake!

Prednisone can cause underlying or dormant bacteria to come out, and

that's what happened to .

His health was just fine but on a day of a regularly scheduled CF

check up, his doctor detected wheezing. So he decided to treat it

with prednisone instead of letting the asthma resolve itself like it

always had in the past.

Within 48 hours, went from feeling great to feeling like total

crap. He started producing huges amounts of gray, hot frothy mucus,

fevers, night sweats, insomnia and rage. These are *not* uncommon

symptoms for people on steroids. Some people develop huge appetites

too, but not , he was spending all his energy feeling like an

enraged, caged lion.

By the fourth day, he begged me to let him stop the prednisone. I

called his doctor (again), explained the symptoms (again) and the

doctor decided that must have the flu -- despite this wasn't

even flu season (early October) and hadn't been around anyone

with the flu and didn't have the tell-tale achiness and vomiting that

flu brings.

So I disagreed with the doctor but he was pretty insistent. I was so

stupid, I should have followed gut instinct. Instead, I filled the

prescription the doctor ordered: flumadine, which is supposed to cut

the life of the flu. Guess what side effects flumadine has? Yep, flu-

like sypmtoms. So now felt nauseated and achey.

His mucus kept increasing and I was getting really scared, I kept

calling the doctor every day, even over the weekend. Finally, on

Monday I called the nurse to ask her advice because I wasn't getting

anywhere with the doctor -- he was over his head with asthma patients

and hospitalizing patients with CF (probably because he put them all

on prednisone!).

The nurse didn't return my call Monday, so I called again Tuesday and

told her was really sick now and should be seen immediately.

She set up an appointment for the next day (Wed.) and scheduled an x-

ray.

The x-ray was " fine " and the doctor said he was " fine. " Of course, by

then had been off prednisone for 48 hours. I'll skin the next

person that tries to give that med to him!

Long term use of prednisone can lead to low bone density

(osteoporosis), stunted growth, and damage to adrenal glands.

Prednisone can also screw up your blood sugars, so be sure to watch

that. You might insist they check her blood sugars often. After

's crisis, I did a lot of reading, and consulted with a nurse

who owns her own CF home health agency in Massachusetts. She said at

that high sudden dose, they should have monitored his blood sugars

(he doesn't have diabetes, but sometimes prednisone can cause

" temporary diabetes. " )

Later, I read in Merck Manual (or maybe it was Gray's Anatomy) that

when blood sugar gets too high, then oxygen drops and carbon dioxide

rises. Which of course makes breathing worse, not better.

I think it was several months ago that some studies were posted on

some list showing ibuprofen causes its own set of problems that

people didn't anticipate when they first started doing clinical

trials on people with CF taking daily ibuprofen to help offset

inflammation (omg... that was a long sentence!).

Here are some questions to think about:

1) Is the doctor suggesting prednisone (or ibuprofen) to help

decrease inflammation in her lungs?

2) Does she culture pseudomonas?

3) If she does culture pseudomonas, is she taking Zithromax?

4) If she cultures pseudomonas but isn't on Zithromax, then would the

doctors consider putting her on Zithromax INSTEAD of prednisone or

ibuprofen?

Zithromax lessens lung inflammation, thins mucus, and can help

prevent pseudomonas from becoming mucoid. Right now it looks to me as

a safer alternative than prednisone -- IF the reason they're thinking

of using prednisone or ibuprofen is due to the inflammation issue.

Remember, prednisone, ibuprofen and Zithromax will deplete magnesium.

And if they're using aminoglycoside type IV antibiotics, those will

also deplete her magnesium. Depleted magnesium will increase her

inflammation -- the very thing they are trying to correct.

Have you gotten the replacement bottle of Mg from House of Nutrition?

I was thinking about that just yesterday and hadn't heard any follow

up from you. Please let me know if I can help on that.

Kim

--- gdattig5@a... wrote:

Monday our oldest is going to be put on a picc line this is the

second time she has had this done. They also want us to start her on

predisone or Ibuprofen. I was wondering how many peoples kids are on

either one of these drugs. They are telling me they think

should take 1000mg of Ibuprofen everyday or they would put her on

predisone every other day. I am worried about what this will do to

her stomach and what kind of side affects there are with predisone. I

would love to hear other peoples feed back. Thanks Deb A

[Guest guest]

> then had been off prednisone for 48 hours. I'll skin the next

> person that tries to give that med to him!

>

Kim,

> Call me when you get ready to skin somebody, I am still very mad at

that guy at the CFF here in Memphis, I'll think of him and I'll be

the best helper.

No, really just kidding, but my mom, who's an RN always said about

any kind of cortisone, steroids, that they fix one thing but break

everything else. The doctor put a on Prednisone in January for 3

days, I'll think about it next time.

Thanks for the info, now I am going to bed,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

[Guest guest]

Predisone has so many side effects - weight gain - bloating - moon face -

moodiness - long term use can lead to osterioprosis - I crucified that word's

spelling! was on that for 8 mos. omg - the moodiness and hunger drove me

nuts!!!

Don't know about long term use of ibuprofen - measure side effects... and

need

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

I agree with Kim that prednisone and such a high dosage of Ibuprofen may

have serious side effects (short and long-term.) My daughter Kate is

currently taking zithromax for inflammation and has had good results

with it. I believe the cautions for zithromax involve liver problems.

So, if has liver involvement, they may recommend against zmax.

Jane Lindrum

Mom of Kate, 4 yowcf

predisone or Ibuprofen

Monday our oldest is going to be put on a picc line this is the second

time

she has had this done. They also want us to start her on predisone or

Ibuprofen. I was wondering how many peoples kids are on either one of

these drugs. They

are telling me they think should take 1000mg of Ibuprofen

everyday

or they would put her on predisone every other day. I am worried about

what

this will do to her stomach and what kind of side affects there are with

predisone. I would love to hear other peoples feed back. Thanks Deb A

[Guest guest]

Dear Rosemary,

I just had a chance to read some earlier posts. I am so very sorry you had

one of those Cloudy days. I sure wish you lived closer. We would just take

those kids & had a great day out & about every so often. No worries.

(remember I don't have a problem with treatments, etc) . I am around that

all the time. even with one of my own with CF. BUT we would just wash all

that out of your hair (head:) & give you some down time...turning the day

into an UP SUNNY day . . maybe you'll get some soon, Are they going to

school yet.? This blackout, I am sure was a UGH day for all

How beautifully all of those cities---NY , NJ , etc handled it all.!!

Congrats to all these folks -----------

Now, back to you, Please know we understand & love you to pieces. Your a gal

we all look up to as you handle " stuff " . I know that load gets heavy

sometimes----a great deal of the time------BUT YOU DO have help -----we are

hear & those single footsteps are a strong faith that you have will also

carry you .

Call me sometime. Its toll free. 1-..Even if it is to just bitch

about something you don't want to put on the list :) My shoulders are

odd.....but strong. AND they love ya!!

LOVE & HUGS,

GrandmoMBEV

Re: predisone or Ibuprofen

Predisone has so many side effects - weight gain - bloating - moon face -

moodiness - long term use can lead to osterioprosis - I crucified that

word's

spelling! was on that for 8 mos. omg - the moodiness and hunger drove

me

nuts!!!

Don't know about long term use of ibuprofen - measure side effects... and

need

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Prednisone and Ibuprofin both have a lot of side effects. One that they don't

tell you about with the Ibuprofin is depression. Depression is common with long

time daily use. I know , I had it and no one told me it could cause depression.

It also causes stomach problems.

Re: predisone or Ibuprofen

Predisone has so many side effects - weight gain - bloating - moon face -

moodiness - long term use can lead to osterioprosis - I crucified that word's

spelling! was on that for 8 mos. omg - the moodiness and hunger drove

me

nuts!!!

Don't know about long term use of ibuprofen - measure side effects... and

need

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

In a message dated 8/16/2003 1:00:01 PM Central Daylight Time,

drea@... writes:

> Prednisone and Ibuprofin both have a lot of side effects. One that they

> don't tell you about with the Ibuprofin is depression. Depression is common

> with long time daily use. I know , I had it and no one told me it could cause

> depression. It also causes stomach problems.

>

>

Is your child on either of these medication. Deb A

[Guest guest]

In a message dated 8/16/2003 12:55:34 AM Central Daylight Time,

kimpayne@... writes:

> Kim

Yes, we got our bottle just this week!! I haven't figured out how to give it

to her yet thou? She will not swallow that big of a pill. They are wanting her

to us the predisone or Ibuprofen for inflammation and yes she does culture

pseudomonas too. I have had a really bad feeling about both of the drugs and

have been dragging my feet for a long time to do either of the drugs but now

they

are really pushing us to one of them. I have been talking to a lot of people

and I think I am going to ask more about the zithromax and tell them I am not

comfortable with taking the other two drugs. I can't remember what antibiotic

she is going to use but I will let you know as soon as I find out. Thanks for

you help Kim!! Deb A

[Guest guest]

Deb,

Iowa has a really good reasearch repuation, so I admit to being a bit

surprised that 's docs would go for the pred or ibuprofen

first instead of Zithromax. I hope you can sway them against the pred.

I spent the day and evening with a lovely young woman from Wisconsin,

she's in her 30's and has CF. She takes 10 mg pred daily but when her

ABPA flares up, it causes asthma problesm so she has to go up to 40 mg

pred a day. She said she hates it. Right now she has the classic moon

face (someone else mentioned that) and the extra facial and body hair

that comes with prednisone. She said it also tends to cause her to

bruise more easily, and there was a big bruise on the inside of her

calf. I told her about and she said to tell you try to keep

her off the pred if at all possible. She's also diabetic but right now

it doesn't seem to affect great fluctuations in her sugar levels.

As for the magnesium, I'm so glad the problem was solved and you got

the bottle. Hope your family does well on it. The tablets break in

half easily, or get a pill splitter and cut them into thirds.

My daughter claims that when she breaks them in half they taste

chalky, but I've broken them in half before and never noticed a

chalkiness. But I've told you before how picky my daughter is!

And just a reminder: Zithromax depletes Mg levels so if she goes on

Zithromax be sure to supplement. But also remember not to take them at

the same time. takes his multi vitamin/mineral and extra Mg in

the morning and Zithromax at night to be sure they don't compete.

Here's something else that most doctors don't know yet because the

info is rather new: it's very important to be sure you do NOT have

Mg deficiency if you take Zithromax. If you're Mg deficient and take

Zithromax (and lots of other meds) then that can cause two heart

conditions 1) torsade de pointes and 2) long QT syndrome, if not

caught these can cause death (they took Propulsid off the US market

because it caused long QT). Supplementing with Mg has been shown to

attenuate torsade de pointes.

Kim

--- gdattig5@a... wrote:

Kim

Yes, we got our bottle just this week!! I haven't figured out how to

give it to her yet thou? She will not swallow that big of a pill. They

are wanting her to us the predisone or Ibuprofen for inflammation and

yes she does culture pseudomonas too. I have had a really bad feeling

about both of the drugs and have been dragging my feet for a long time

to do either of the drugs but now they are really pushing us to one of

them. I have been talking to a lot of people and I think I am going to

ask more about the zithromax and tell them I am not comfortable with

taking the other two drugs. I can't remember what antibiotic she is

going to use but I will let you know as soon as I find out.

Thanks for you help Kim!! Deb A

[Guest guest]

Hi all, I have been reading all the comments about prednisone and ibu. Got me

thinking. Rhonda has been ibu for about 6 yrs I think. She started at 600mg

2x a day, then went to 800mg 2x a day, now she has been on 1000mg 2x a day for

about 2 yrs now. She also takes prednisone when having wheezing, tightness,

pain when breathing etc. low dosage I believe though. She takes 40mg of

prednisone 2x daily for 3 days, then 20mg 1x per day for three days to taper

off.

Rhonda does not take prednisone that often maybe 3- 5 times a year. She still

takes her 1000mg of ibu while on the prednisone. I have not noticed too much in

the way of side effects except she eats like a horse. I don't necessarily mind

the extra calories that she gets at that time. I wish she wold eat like that

all the time! At the last clinic visit Rhonda's pft's were down. The docs

decided to try her on zithro, mon,wed,fri 500mg. Rhonda was on biaxin 250 mg 2x

daily at that time. That was discontinued and the zithro added. Rhonda went to

clinic the 13th of this month. Pft's down more. Rhonda has had trouble breathing

a few times between visits. ( as in I CAN " T BREATHE! scary) So the doc at

this recent clinic visit decided to have her go back to the biaxin for 1 month,

and then zithro for 1 month to see which may make her feel better. Rhonda also

is on colymicin 30 days on and 30 off. Though it seems as soon as she is off

the colymicin she starts getting sick again. Also Rhonda has had some GI

problems lately. Her cf doc told us to make an appt. with the gi doc there. Have

to wait till Nov.24th for that appt. I don't know what my point is here! Maybe

I'm feeling like she is over medicated as I read all the posts regarding this

topic. Also I saw the article about the salmeterol with the new warning.

Rhonda takes advair 500/50. Her sick dose is 2 clicks 2x daily when sick (sick

dose

has been taken 2x in 3 months) regular dose 1 click 2x daily. Rhonda also has

a few other meds flonase, extendryl for her sinus, prilosec, and of course

her enzymes ultrase mt20. Rhonda does culture 2 forms of psudo. 1 is very

resistant to antibiotics. Maybe thats why all the meds. I don't know. Maybe I

just

don't know enough. Well I will stop rambling. I started out on topic and let

myself just keep going. Sorry all. mom to Rhonda 14wcf

[Guest guest]

has been on pediapred several times. She is usually moody when on it but

she is only put on it when she is sick and she is moody when sick. So I'm not

sure if the moodiness is from the med or being sick. She has never been on

Ibuprofin for an extended period, but as i said, I have. And it caused

depression for me.

Re: predisone or Ibuprofen

In a message dated 8/16/2003 1:00:01 PM Central Daylight Time,

drea@... writes:

> Prednisone and Ibuprofin both have a lot of side effects. One that they

> don't tell you about with the Ibuprofin is depression. Depression is common

> with long time daily use. I know , I had it and no one told me it could

cause

> depression. It also causes stomach problems.

>

>

Is your child on either of these medication. Deb A

[Guest guest]

In a message dated 8/17/2003 12:16:27 AM Central Daylight Time,

kimpayne@... writes:

> 1) torsade de pointes and 2) long QT syndrome,

I have never heard of either one of these heart problems! What symptoms do

they have? We go in to get the picc line tomorrow so I will keep you posted as

to what happens. I still have some of the Shakelee magnesium pills that are

chewable so I am going to keep them on them until they are gone and then I think

I will try to give them the Solgar. Also if we do any of the two medication we

will do the Ibuprofen over the predisone. Thank for your help!! Deb A

[Guest guest]

,

I am so sorry Rhonda's going through all of this. It seems like a such

a hit and miss way to prescribe meds, doesn't it?

For whatever it's worth, all I can say is what I've mentioned before.

All of those meds you said she takes or has taken, deplete magnesium.

And as long as she takes them they will deplete magnesium.

I'm not suggesting she doesn't need those meds; I'm suggesting the

doctors are overlooking something very crucial that may help resolve

the problem so that she will either need less of the meds or perhaps

can get off some of them.

If you ask her docs to test her magnesium levels, just remember the

blood test won't reflect intracellular levels, but it may give you a

point of reference. IF the blood magnesium level comes back on the low

side of " in-range, " then you can pretty safely bet that she IS

magnesium deficient. If the blood work comes back showing she's low,

then you'll know she is seriously low.

And often adding magnesium will ameliorate many of the short of breath

symptoms. Magnesium is often given by IV to people with asthma. Don't

know why CF docs aren't connecting the dots.

Just something to think about... okay?

Kim

[Guest guest]

8-19-03

My daughter Steph has been on prednisone now for about 3 years. She

currently takes the most they will give and that is 1600 mg twice a day.

She doesn't seem to have any trouble with her stomach at all. She started

with a lower dosage when she was younger and it has increased as she has

gained weight and gotten older. For her this is better than the prednisone.

It has other side affects that she doesn't like, for instance the mood

swings, increased appetite. She is a good eater so weight increase is not a

problem.

Tina W., mother of steph, age 17wcf

predisone or Ibuprofen

Monday our oldest is going to be put on a picc line this is the second time

she has had this done. They also want us to start her on predisone or

Ibuprofen. I was wondering how many peoples kids are on either one of these

drugs. They

are telling me they think should take 1000mg of Ibuprofen everyday

or they would put her on predisone every other day. I am worried about what

this will do to her stomach and what kind of side affects there are with

predisone. I would love to hear other peoples feed back. Thanks Deb A