Prednisone Question

[Guest guest]

wishkas@... wrote:

> My best friend was/is a juevinille diabetic. She had a kidney and

pancreas transplant 3 years ago. Because of this she has to take LOTS of

meds. Anyhoo, she has to take *dread* prednisone. Many times she has

complained that the meds(prednisone) are turning her teeth

> yellow. I was just curious if any of you have experienced this.

Hi- I don't really know about the yellow teeth because I somke (lol) but I

have been on Prednisone since 1986 & have lost 4 teeth because of bone loss.

Nothing to hold my teeth in!! lol I also have cushings, " buffalo hump " ,

severe osteoporosis. I have had cataract surgery on both eyes because of the

prednisone. Yellow teeth is a very minor thing considering all of the other

side effects!!

ne

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[Guest guest]

wishkas@... wrote:

My best friend was/is a juevinille diabetic. She

had a kidney and pancreas transplant 3 years ago. Because of this she has

to take LOTS of meds. Anyhoo, she has to take *dread* prednisone. Many

times she has complained that the meds(prednisone) are turning her teeth

yellow. I was just curious if any of you have experienced this.

I was on steroids for

over 18 months straight. I now have Cushing's Syndrome. But

the biggest casualty to the steroids was my teeth. Because teeth

are bone. Steroid pull the calcium from bone, that is why they stress

so much that you take calcium, vitamin D, & magnesium while on the

steroids. Even though I took everything plus some, my teeth were

destroyed. I went to the dentist at least once a year until my allergies

got really bad, and no private practice dentist would touch me.

In May 1999 I went

to the University of Minnesota Dental school. After a few x-rays,

and my initial consultation, it was decided that I had over 30 cavities,

for which I went to the hospital Operating Room for 6 hours of dental work.

I brush my teeth almost

constantly now, and yet I have another bunch of nasty cavities that need

to be filled again, which probably (at least I am hoping) will be done

in the operating room again, so it can be done all at once!

If you have, has anyone used anything to whiten your

teeth? I really don't care what her teeth look like but she is very self-conscious

about this. She's has lots of other problems but I can't remember all of

them! Anyway, thanks!

So I don't know what to

do about the yellowing, except to make sure she brushes a lot! Because

it could be the warning signs of problems ahead.

Hope this made sense.

Anne

[Guest guest]

Alison,

I have been on prednisone for 25+ years and my dentist has told me that " it

has done a job " on my teeth. My teeth are discolored and I have a hard time

keeping teeth. The best thing that she can do is find a good, caring and

compassionate dentist to work with her and take into account the meds.

Good luck, B

[Guest guest]

Hi Ali,

You need to tell your friend to talk to her dentist about prednisone

before she has any work done on her teeth. Its essential that every

dr and dentist etc knows that she is on prednisone. I dont know about

the yellowing of teeth thing - however my dentists have a website

(and they are lovely although no use to you for you are in the USA)

and they might have some info on whitening cosmetically etc.. the url

for them is http://www.shdc.com.au/index2.html

How are you doing sweet one?

*hgus* <--- oh dear!! Guess its time to stop the archive cruise!

*HUGS*

Love Aisha.

[Guest guest]

Prednisone has some severe side effects over time. I think the

statistic my doc quoted was a 75% chance of serious side effects for

anyone taking it over three years. The side effects are: pred-

induced diabetes, osteoporosis, cataracts, glaucoma,...mostly the

pred " chews " up calcium in your body and messes with your blood

sugar. Weight training can help with your bones as can a good

Calcium/Magnesium supplement. The water weight gain and acne and

facial hair are " minor " side effects compared to the other...

in my opinion, after a year on the prednisone...I think the weight

gain, acne, and facial hair are hard too because it effects how I

feel about how I look...

Betsy AIH San Diego

P.S. I am from PA - Lancaster. Where do you live? My folks are

still there.

> I have seen some posts here about Prednisone. It seems many are on

> it? Is this due to swelling or inflamation I mean what is it

precribed

> so often for liver disease?

>

> I have been on it since April, 10 mg a day, but feel no differently

> with or without it. My hematologist prescribed it because the

biggest

> problem I have for now from this liver disease is an enlarged spleen

> which has ben 15 cm..larger then the liver.

>

> Is there anything I should keep an eye out for in my bloodwork??

> I am lucky and have a spot I go on line that tells me every result

and

> a graft and extensive info when I get blood tested.

>

> Any feedback will be appreciated and hope the day leaves all in

good

> health..

>

> /PA

[Guest guest]

In all my reading, Prednisone was not a long term medication for

transplanted livers. For people who have Myasthenia Gravis, they try

to drop the dosage down for those who want to take it.

It seems to me that most immunosuppressant are prescribed to keep you

alive, for the cirrhosis not to get worst, and try to improve the

test numbers on your Liver Function Tests.

The doctors start to prescribe from the:

Most common medication to

Most aggressive medication

I know that my medication only suppresses one of my autoimmune

diseases, which is Myasthenia Gravis. And it supressed it back to

remission.

I know that from reading medical research studies that Prograf

suppresses certain T-cells, and it suppresses another cell known as

Natural Killer cells, that reside in the liver. The same medical

study said that by supressing the Natural Killer cells, that a

partially transplanted liver was allowed to regenerate itself.

The question that I asked myself, was if Natural Killer cells were

suppressed in a donor's body where the donor gave away 1/2 of their

liver in a partial transplant, then would the same medication

suppress the Natural Killer cells in my liver, allowing new blood

veins to form, and allow my shrunken liver to regenerate around the

cirrohosis?

I asked that question to one of my transplant doctors, and he said,

it was possible, but I would have a bumpy liver because of the

cirrhosis, but it would be functioning.

Because my Liver Function Tests are still outside of normal range, I

still have a diseased liver. But on occasion, some of my numbers go

into normal range, then they pop out of range. I've been on Prograf

for 21 months now, and I'm hoping that something positive will happen

to my liver.

My doctors are monitoring my progress much closer now, since I'm the

only person on a pre-transplant list taking Prograf, and they are

very interested if I have a positive experience.

Anyway, if one doesn't like the side effects of Prednisone, then ask

the doctor for another immunosuppressant. But read up on the side

effects before you take it.

[Guest guest]

Hello Betsy

having been diagnosed with PBC only recently I cannot believe how much

weight I have gained it must be the pred this has made me very depressed.

Along with the fatigue having no ernergy is not helping either. I only hope

I will not have to stay on pred forever.

Anne (UK Sheffield)

[ ] Re: Prednisone Question

> Prednisone has some severe side effects over time. I think the

> statistic my doc quoted was a 75% chance of serious side effects for

> anyone taking it over three years. The side effects are: pred-

> induced diabetes, osteoporosis, cataracts, glaucoma,...mostly the

> pred " chews " up calcium in your body and messes with your blood

> sugar. Weight training can help with your bones as can a good

> Calcium/Magnesium supplement. The water weight gain and acne and

> facial hair are " minor " side effects compared to the other...

>

> in my opinion, after a year on the prednisone...I think the weight

> gain, acne, and facial hair are hard too because it effects how I

> feel about how I look...

>

> Betsy AIH San Diego

>

> P.S. I am from PA - Lancaster. Where do you live? My folks are

> still there.

>

>

>

>

> > I have seen some posts here about Prednisone. It seems many are on

> > it? Is this due to swelling or inflamation I mean what is it

> precribed

> > so often for liver disease?

> >

> > I have been on it since April, 10 mg a day, but feel no differently

> > with or without it. My hematologist prescribed it because the

> biggest

> > problem I have for now from this liver disease is an enlarged spleen

> > which has ben 15 cm..larger then the liver.

> >

> > Is there anything I should keep an eye out for in my bloodwork??

> > I am lucky and have a spot I go on line that tells me every result

> and

> > a graft and extensive info when I get blood tested.

> >

> > Any feedback will be appreciated and hope the day leaves all in

> good

> > health..

> >

> > /PA

>

>

>

[Guest guest]

--- Moonrosefury@... wrote:

> I have seen some posts here about Prednisone. It

> seems many are on

> it? Is this due to swelling or inflamation I mean

> what is it precribed

> so often for liver disease?

>

> I have been on it since April, 10 mg a day, but feel

> no differently

> with or without it. My hematologist prescribed it

> because the biggest

> problem I have for now from this liver disease is an

> enlarged spleen

> which has ben 15 cm..larger then the liver.

>

> Is there anything I should keep an eye out for in my

> bloodwork??

> I am lucky and have a spot I go on line that tells

> me every result and

> a graft and extensive info when I get blood tested.

>

> Any feedback will be appreciated and hope the day

> leaves all in good

> health..

>

> /PA

>

>,

My endo Doc put me on the prednisone because it

reduces the inflamation in the liver.At least he hopes

it will.I was told the benefits of prednisone outweigh

the side effects of it, if I can tolerate it .

Ann in Illinois

__________________________________________________

[Guest guest]

Anne,

Hang in there! I do listen to positive motivation tapes and try to

lower my sodium and not et red meat or chicken. Also, the caffeine

from coffee or diet coke acts to keep me awake as well as a

diuretic. I know it's a calcium depleter but it really helps me

through a day.

Betsy

> > > I have seen some posts here about Prednisone. It seems many are

on

> > > it? Is this due to swelling or inflamation I mean what is it

> > precribed

> > > so often for liver disease?

> > >

> > > I have been on it since April, 10 mg a day, but feel no

differently

> > > with or without it. My hematologist prescribed it because the

> > biggest

> > > problem I have for now from this liver disease is an enlarged

spleen

> > > which has ben 15 cm..larger then the liver.

> > >

> > > Is there anything I should keep an eye out for in my bloodwork??

> > > I am lucky and have a spot I go on line that tells me every

result

> > and

> > > a graft and extensive info when I get blood tested.

> > >

> > > Any feedback will be appreciated and hope the day leaves all in

> > good

> > > health..

> > >

> > > /PA

> >

> >

> >

[Guest guest]

Mr. Editor/,

Thanks for explaining prednisone in layman terms....I think I really

" get it " now.

If you took it for 10 yrs, did you suffer any of the long term side

effects? I'm 62, so in 10 yrs when I'm 72, maybe there will be

something else.....however, your " applesauce " analogy is a definite put

off..I've got a lot of skin to turn mushy..not a pretty picture..but

since I already " feel " 72 maybe it'd be worth it! Liz

[Guest guest]

Hi Liz,

Yep, that " apple sauce " analogy got to me too--I think it helped me

decide to wean off Prednisone.

As far as long-term effects: For almost all the ten years, I stayed

under 10 mg.--usually just 5 mg. or less--per day. (That's within the

range the body makes for itself.) Last month, I had a bone density

test. The rheumatologist was sure I'd have a density loss, but the

test showed otherwise. (Maybe because I'm a milk junkie?? Two gallons

a week...)

You raise a valid point: Quality of life is a valid priority; if

prednisone is the difference between adequate functioning, or the

lack thereof, and the doc agrees, maybe one should go for it...I'm

sure the last one to make judgements for others.

Wishing you the best,

D.

> Mr. Editor/,

>

> Thanks for explaining prednisone in layman terms....I think I really

> " get it " now.

>

> If you took it for 10 yrs, did you suffer any of the long term side

> effects? I'm 62, so in 10 yrs when I'm 72, maybe there will be

> something else.....however, your " applesauce " analogy is a definite

put

> off..I've got a lot of skin to turn mushy..not a pretty picture..but

> since I already " feel " 72 maybe it'd be worth it! Liz

[Guest guest]

Hi e,

It would all depend on how long you have been taking the pred.While 2mg a day

is a very small dose your adrenal glands may still need time to catch up to

normal function.My son was taking 1mg every other day and I stoped it 3 weeks

early and all was well after 20 months on them.

I would discuss it with your rheumy and see what they think.I would also sit

down and realy,realy think about how you feel since stoping.It is very well

possible that you don't need them any more but your body might go through a bit

of steroid withdrawl.

Let us know what they say tomorrow and hopefuly good ridance to the pred.

Hugs

Becki and 6systemic

[Guest guest]

I was on 40 mg of prednisone for five days and I didn't even get tappered off

of it which I thought was weird. If your body is doing fine without it then

you dont need it. Prednisone is not a good medication to be on cause of the

side effects.

[Guest guest]

I am aware of the side effects, But I have not had any side effects from

it. I was/am on prednisone for maybe 2 to 2 ½ years now. Maybe more. Im

ready to say good bye, but I want to do it safely. I am hoping that the

DR. I am seeing tomorrow will have a clue. Its not my Rheumatologist.

Just my general dr.

~e

Re: prednisone question

I was on 40 mg of prednisone for five days and I didn't even get

tappered off

of it which I thought was weird. If your body is doing fine without it

then

you dont need it. Prednisone is not a good medication to be on cause of

the

side effects.

[Guest guest]

Even with a high dose, you have to be on pred for a number of days before it

interferes with your body's ability to produce it's own cortisol - that is when

you require a taper. It seems to me that Robbie's nephrologist told me it was

either 7 or 10 days, I am leaning towards 10, but can't remember which she said.

Early on, in treating his MCD, she was hoping the protein in his urine would

resolve before he had been on the med that long, to avoid the taper - but it

didn't work out that way.

Val

Rob's Mom (6,systemic)

In a message dated 8/17/2004 5:45:21 PM Eastern Daylight Time,

bncknwurnumber@... writes:

>

>I was on 40 mg of prednisone for five days and I didn't even get tappered off

>of it which I thought was weird.  If your body is doing fine without it then

>you dont need it.  Prednisone is not a good medication to be on cause of the

>side effects.

>

>

>

[Guest guest]

Hi ,

Sorry to hear about Aundrea...

Eliot's flares have always subsided with prednisone but the doses are

higher. He weighs 60kgs and last June when he was flaring he had three days of

pulse steriods in hospital and then 50 mg daily for several weeks, Improvement

(not spectacular) within 10 days. But my doctor always tells me that a flare

means the treatment is not aggressive enough and indicates that a new strategy

needs (apart from the pred) to be put into place as 'all' the pred does is

control inflammation and not treat anything. And as for the tapering it has

always been very slow and bit different to that described in other posts Once

Eliot's lab tests are better after a flare we start cutting down on the

predisone and this is how it works: full dose one day - 5 mgs the next for a

week

and then 50 one day and 40 the next etc... When we get to 50 one day and 10 the

next and have been there a week we start cutting down on the 50! And when we

finally get down to 10 mgs on both days we taper by increments of 2.5 mg a

week...So it's a LONG process but it has worked well. Eliot is also on a

combination of MTX taken orally (liquid) 25 ml weekly and daily Cyclosporine

(Neoral). I do hope this helps...

What else is Aundrea taking? My thoughts are with you both.

Chloe

Mom to Eliot (systemic 10)

[Guest guest]

- I am sorry to hear Aundrea is having such a rough go at it. If she

doesn't start feeling better by tomorrow I would call her rheumy and see if

they are willing to upp the Prednisone a little more. Have you tried Motrin

or Tylenol. Motrin used to help Caroline until we found out her liver

couldn't handle it.

Give Aundrea a little hug from us!

Alia and Caroline, age 2, poly and uveitis

prednisone question

Hello again,

Aundrea is on her second day of pred and so far no improvement at

all. I know I am probably jumping the gun here but on our last

burst (6 weeks ago) she really seemed better by day 2. This flare

has really been a hard one. She isn't getting out of bed at all and

is just so miserable. On the last burst they started her out on

20mg and this time she started on 10 with plans to do a really slow

taper. Am I just being overly anxious here or shouldn't we be

having some improvement by now. (Well I guess the rash is a little

less, but could care less about that the moment because it doesn't

cause any pain) The sorethroat and swollen lymph nodes are so

intense. She is sucking on popsicles like crazy but nothing really

helps.

I guess I am just venting. Its just been a really tough couple of

days.

(Drea age 9 systemic)

[Guest guest]

My goodness your Eliot was certainly on some high doses of steroids

and I can see that the taper must have felt like forever. I think

you are right about the continued flares meaning that the Plaquenil

isn't enough to take care of the jra. I know they plan to discuss

this but our next appointment isn't until the end of Jan. By then

we are suppose to be tapering down to 1mg. I am surprised that we

aren't making a change to the DMARD sooner, since she has basically

been flaring or on prednisone since early November.

I am going to see what tomorrow brings and if she is still basically

bedbound I will put in another call to the rheumy.

Thanks for the info. on Elliot and his pred experience.

(aundrea 9 systemic)-

-- In , cnewtonlagamba@a... wrote:

> Hi ,

> Sorry to hear about Aundrea...

> Eliot's flares have always subsided with prednisone but the doses

are

> higher. He weighs 60kgs and last June when he was flaring he had

three days of

> pulse steriods in hospital and then 50 mg daily for several weeks,

Improvement

> (not spectacular) within 10 days. But my doctor always tells me

that a flare

> means the treatment is not aggressive enough and indicates that a

new strategy

> needs (apart from the pred) to be put into place as 'all' the pred

does is

> control inflammation and not treat anything. And as for the

tapering it has

> always been very slow and bit different to that described in other

posts Once

> Eliot's lab tests are better after a flare we start cutting down

on the

> predisone and this is how it works: full dose one day - 5 mgs the

next for a week

> and then 50 one day and 40 the next etc... When we get to 50 one

day and 10 the

> next and have been there a week we start cutting down on the 50!

And when we

> finally get down to 10 mgs on both days we taper by increments of

2.5 mg a

> week...So it's a LONG process but it has worked well. Eliot is

also on a

> combination of MTX taken orally (liquid) 25 ml weekly and daily

Cyclosporine

> (Neoral). I do hope this helps...

> What else is Aundrea taking? My thoughts are with you both.

> Chloe

> Mom to Eliot (systemic 10)

>

>

>

[Guest guest]

-

Hi Alia,

It seems like Caroline has been fighting this uveitis for so long.

I have been praying for your sweet girl to get better soon.

I will have to try using some motrin. It never helped in the past

and she was getting severe stomach upset from the high doses that we

had her on. I guess that was Naproxyn and Aleve. I was thinking

about just giving her some tylenol with codene. If nothing else

maybe she could sleep.

Well Aundrea is hollering for me to get her in the tub so I'd better

go. Your in my prayers!

God Bless,

(drea 9 systemic)

- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> - I am sorry to hear Aundrea is having such a rough go at

it. If she

> doesn't start feeling better by tomorrow I would call her rheumy

and see if

> they are willing to upp the Prednisone a little more. Have you

tried Motrin

> or Tylenol. Motrin used to help Caroline until we found out her

liver

> couldn't handle it.

>

> Give Aundrea a little hug from us!

>

> Alia and Caroline, age 2, poly and uveitis

>

> prednisone question

>

>

>

> Hello again,

>

> Aundrea is on her second day of pred and so far no improvement at

> all. I know I am probably jumping the gun here but on our last

> burst (6 weeks ago) she really seemed better by day 2. This flare

> has really been a hard one. She isn't getting out of bed at all

and

> is just so miserable. On the last burst they started her out on

> 20mg and this time she started on 10 with plans to do a really

slow

> taper. Am I just being overly anxious here or shouldn't we be

> having some improvement by now. (Well I guess the rash is a

little

> less, but could care less about that the moment because it doesn't

> cause any pain) The sorethroat and swollen lymph nodes are so

> intense. She is sucking on popsicles like crazy but nothing

really

> helps.

>

> I guess I am just venting. Its just been a really tough couple of

> days.

>

> (Drea age 9 systemic)

>

>

>

>

>

>

[Guest guest]

, If she is still bedridden after three days of steroids, call the

rheumy. If he doesn't respond, call him again, etc, etc. etc. Sorry if I

seem to assertive, but I get sick of this disease and getting hold of

doctors. It is just my humble opinion, but I think it is time to try

another medication. Prednisone is just a bandaid approach, until something

else can be done and that medication can start to work. Mtx would probably

be the next step. Get her on it, for it takes weeks to work. Remember to

keep a diary, so when you see the rheumy you can say boom , boom, boom-this

is what is going on.

n gets more injections next Wednesday. It is supposed to be just her

foot, but now several joints are getting messed up. I think it is time for

us to add another med. She is on enbrel, and maybe we will try mtx again.

It made her so sick this summer though, I can't imagine juggling school with

it. It pretty much confined her to bed last time. Time will tell.

(n, 15, systemic)

Re: prednisone question

>

>

> My goodness your Eliot was certainly on some high doses of steroids

> and I can see that the taper must have felt like forever. I think

> you are right about the continued flares meaning that the Plaquenil

> isn't enough to take care of the jra. I know they plan to discuss

> this but our next appointment isn't until the end of Jan. By then

> we are suppose to be tapering down to 1mg. I am surprised that we

> aren't making a change to the DMARD sooner, since she has basically

> been flaring or on prednisone since early November.

>

> I am going to see what tomorrow brings and if she is still basically

> bedbound I will put in another call to the rheumy.

>

> Thanks for the info. on Elliot and his pred experience.

>

> (aundrea 9 systemic)-

>

> -- In , cnewtonlagamba@a... wrote:

> > Hi ,

> > Sorry to hear about Aundrea...

> > Eliot's flares have always subsided with prednisone but the doses

> are

> > higher. He weighs 60kgs and last June when he was flaring he had

> three days of

> > pulse steriods in hospital and then 50 mg daily for several weeks,

> Improvement

> > (not spectacular) within 10 days. But my doctor always tells me

> that a flare

> > means the treatment is not aggressive enough and indicates that a

> new strategy

> > needs (apart from the pred) to be put into place as 'all' the pred

> does is

> > control inflammation and not treat anything. And as for the

> tapering it has

> > always been very slow and bit different to that described in other

> posts Once

> > Eliot's lab tests are better after a flare we start cutting down

> on the

> > predisone and this is how it works: full dose one day - 5 mgs the

> next for a week

> > and then 50 one day and 40 the next etc... When we get to 50 one

> day and 10 the

> > next and have been there a week we start cutting down on the 50!

> And when we

> > finally get down to 10 mgs on both days we taper by increments of

> 2.5 mg a

> > week...So it's a LONG process but it has worked well. Eliot is

> also on a

> > combination of MTX taken orally (liquid) 25 ml weekly and daily

> Cyclosporine

> > (Neoral). I do hope this helps...

> > What else is Aundrea taking? My thoughts are with you both.

> > Chloe

> > Mom to Eliot (systemic 10)

> >

> >

> >

[Guest guest]

and Helen,

Thanks for your timely input. I just placed a call to the

rheumatologists office and plan to tell them that Aundrea needs

something better than just steroids. Aundrea is saying that her

pain is off the scale and it certainly can't be helping her to be in

bed non-stop for days on end.

I am so aggressive at my job and get things done but for some reason

I feel so uncertain as to what is best for Aundrea that I end up

just following whatever the dr. says and then I become frustrated

that we are just covering up the pain and not doing anything to

fight the disease.

Well as I was writing you guys the doctors nurse just called me

back. Thats the other thing thats been a problem. I only ever talk

to the nurse and since Aundrea started flaring in early Nov. she

hasn't even seen the rheumy we have just been making med changes by

telephone.

Anyway the nurse said that we could up the pred back up to 20mg and

I just stopped her at that and said that I wanted to talk with the

rheumy directly and that we needed to do something different than

this bandaid approach. She was really nice about it and told me

that she would get a message to the rheumy. However the rheumy is

very busy and writing some type of grant and ready to pull her hair

out so I may not hear from her until tommorrow. I told her I was

ready to pull my hair out and would like a call tonight.

So you guys really helped me and I hope that I am doing the right

thing. I will let you know what she recommends for treatment. If

its methotrexate what dose should I expect her to prescribe.

Aundrea weighs 81 lbs.

You guys are wonderful. Without this support I would be more of a

basket case than I already am.

(drea 9 systemic)

- In , " WILLIAM PRICE " <bc.price@c...> wrote:

> , If she is still bedridden after three days of steroids,

call the

> rheumy. If he doesn't respond, call him again, etc, etc. etc.

Sorry if I

> seem to assertive, but I get sick of this disease and getting hold

of

> doctors. It is just my humble opinion, but I think it is time to

try

> another medication. Prednisone is just a bandaid approach, until

something

> else can be done and that medication can start to work. Mtx would

probably

> be the next step. Get her on it, for it takes weeks to work.

Remember to

> keep a diary, so when you see the rheumy you can say boom , boom,

boom-this

> is what is going on.

> n gets more injections next Wednesday. It is supposed to be

just her

> foot, but now several joints are getting messed up. I think it is

time for

> us to add another med. She is on enbrel, and maybe we will try

mtx again.

> It made her so sick this summer though, I can't imagine juggling

school with

> it. It pretty much confined her to bed last time. Time will tell.

> (n, 15, systemic)

> Re: prednisone question

>

>

> >

> >

> > My goodness your Eliot was certainly on some high doses of

steroids

> > and I can see that the taper must have felt like forever. I

think

> > you are right about the continued flares meaning that the

Plaquenil

> > isn't enough to take care of the jra. I know they plan to

discuss

> > this but our next appointment isn't until the end of Jan. By

then

> > we are suppose to be tapering down to 1mg. I am surprised that

we

> > aren't making a change to the DMARD sooner, since she has

basically

> > been flaring or on prednisone since early November.

> >

> > I am going to see what tomorrow brings and if she is still

basically

> > bedbound I will put in another call to the rheumy.

> >

> > Thanks for the info. on Elliot and his pred experience.

> >

> > (aundrea 9 systemic)-

> >

> > -- In , cnewtonlagamba@a... wrote:

> > > Hi ,

> > > Sorry to hear about Aundrea...

> > > Eliot's flares have always subsided with prednisone but the

doses

> > are

> > > higher. He weighs 60kgs and last June when he was flaring he

had

> > three days of

> > > pulse steriods in hospital and then 50 mg daily for several

weeks,

> > Improvement

> > > (not spectacular) within 10 days. But my doctor always tells me

> > that a flare

> > > means the treatment is not aggressive enough and indicates

that a

> > new strategy

> > > needs (apart from the pred) to be put into place as 'all' the

pred

> > does is

> > > control inflammation and not treat anything. And as for the

> > tapering it has

> > > always been very slow and bit different to that described in

other

> > posts Once

> > > Eliot's lab tests are better after a flare we start cutting

down

> > on the

> > > predisone and this is how it works: full dose one day - 5 mgs

the

> > next for a week

> > > and then 50 one day and 40 the next etc... When we get to 50

one

> > day and 10 the

> > > next and have been there a week we start cutting down on the

50!

> > And when we

> > > finally get down to 10 mgs on both days we taper by increments

of

> > 2.5 mg a

> > > week...So it's a LONG process but it has worked well. Eliot is

> > also on a

> > > combination of MTX taken orally (liquid) 25 ml weekly and daily

> > Cyclosporine

> > > (Neoral). I do hope this helps...

> > > What else is Aundrea taking? My thoughts are with you both.

> > > Chloe

> > > Mom to Eliot (systemic 10)

> > >

> > >

> > >

[Guest guest]

The rheumy is too busy to talk to patients because she is writing a grant?

Excuse me , but aren't doctors supposed to help their patients. Better you

than me talking to that nurse. I wouldn't have been able to bite my tongue

hard enough. I hope you get a response. Don't feel guilty about anything.

You know your child the best, you see her all of the time, and you are her

only advocate. You go girl! (n, 15, systemic)

Re: prednisone question

> >

> >

> > >

> > >

> > > My goodness your Eliot was certainly on some high doses of

> steroids

> > > and I can see that the taper must have felt like forever. I

> think

> > > you are right about the continued flares meaning that the

> Plaquenil

> > > isn't enough to take care of the jra. I know they plan to

> discuss

> > > this but our next appointment isn't until the end of Jan. By

> then

> > > we are suppose to be tapering down to 1mg. I am surprised that

> we

> > > aren't making a change to the DMARD sooner, since she has

> basically

> > > been flaring or on prednisone since early November.

> > >

> > > I am going to see what tomorrow brings and if she is still

> basically

> > > bedbound I will put in another call to the rheumy.

> > >

> > > Thanks for the info. on Elliot and his pred experience.

> > >

> > > (aundrea 9 systemic)-

> > >

> > > -- In , cnewtonlagamba@a... wrote:

> > > > Hi ,

> > > > Sorry to hear about Aundrea...

> > > > Eliot's flares have always subsided with prednisone but the

> doses

> > > are

> > > > higher. He weighs 60kgs and last June when he was flaring he

> had

> > > three days of

> > > > pulse steriods in hospital and then 50 mg daily for several

> weeks,

> > > Improvement

> > > > (not spectacular) within 10 days. But my doctor always tells me

> > > that a flare

> > > > means the treatment is not aggressive enough and indicates

> that a

> > > new strategy

> > > > needs (apart from the pred) to be put into place as 'all' the

> pred

> > > does is

> > > > control inflammation and not treat anything. And as for the

> > > tapering it has

> > > > always been very slow and bit different to that described in

> other

> > > posts Once

> > > > Eliot's lab tests are better after a flare we start cutting

> down

> > > on the

> > > > predisone and this is how it works: full dose one day - 5 mgs

> the

> > > next for a week

> > > > and then 50 one day and 40 the next etc... When we get to 50

> one

> > > day and 10 the

> > > > next and have been there a week we start cutting down on the

> 50!

> > > And when we

> > > > finally get down to 10 mgs on both days we taper by increments

> of

> > > 2.5 mg a

> > > > week...So it's a LONG process but it has worked well. Eliot is

> > > also on a

> > > > combination of MTX taken orally (liquid) 25 ml weekly and daily

> > > Cyclosporine

> > > > (Neoral). I do hope this helps...

> > > > What else is Aundrea taking? My thoughts are with you both.

> > > > Chloe

> > > > Mom to Eliot (systemic 10)

> > > >

> > > >

> > > >

[Guest guest]

Hi ,

I am so sorry that, even after five or six months being on Enbrel,

n has been having continuing difficulties. How are her wrists

doing? Her knees? Her jaw? When you say she's getting injections in her

foot next week, is that her ankle that's being done or another area? I

sure hope she gets good results from the joint injections. Is she even

willing to try the MTX again, after feeling so sick last time? Josh was

bummed out about needing to go back to the weekly schedule but seeing as

it helps his joints so much and this last flare put him in pretty bad

shape again he understood that, logically, it was a necessary step.

He's already reaping the benefits! He's already been talking about maybe

trying to decrease the steroids.

I hope that n will be doing better soon, too.

Aloha,

Georgina

WILLIAM PRICE wrote:

> , If she is still bedridden after three days of steroids, call the

> rheumy. If he doesn't respond, call him again, etc, etc. etc. Sorry if I

> seem to assertive, but I get sick of this disease and getting hold of

> doctors. It is just my humble opinion, but I think it is time to try

> another medication. Prednisone is just a bandaid approach, until something

> else can be done and that medication can start to work. Mtx would probably

> be the next step. Get her on it, for it takes weeks to work. Remember to

> keep a diary, so when you see the rheumy you can say boom , boom, boom-this

> is what is going on.

> n gets more injections next Wednesday. It is supposed to be just her

> foot, but now several joints are getting messed up. I think it is time for

> us to add another med. She is on enbrel, and maybe we will try mtx again.

> It made her so sick this summer though, I can't imagine juggling school with

> it. It pretty much confined her to bed last time. Time will tell.

> (n, 15, systemic)

[Guest guest]

Hi Chloe,

Thank you for all of the details you shared in your message. The

prednisone tapering schedule your son has used does seem quite different

from most of those I've heard about. I'm always very interested in

hearing about what has worked well for others, as this has been a

challenge for us.

I'm familiar with the Kourir organization! One of the founder's has a

son with systemic arthritis, close in age to my son. Anton Gruss? We

'met' online in 1996. Lately, though, we haven't been in touch. He was

very actively involved with the European Arthritis Advocacy and Research

organizations. If, by chance, you know Anton ... please send my warmest

regards. I would love to hear about how his son Vivien has been doing.

Aloha, and welcome to our group,

Georgina

cnewtonlagamba@... wrote:

> Hi ,

> Sorry to hear about Aundrea...

> Eliot's flares have always subsided with prednisone but the doses are

> higher. He weighs 60kgs and last June when he was flaring he had three days of

> pulse steriods in hospital and then 50 mg daily for several weeks, Improvement

> (not spectacular) within 10 days. But my doctor always tells me that a flare

> means the treatment is not aggressive enough and indicates that a new strategy

> needs (apart from the pred) to be put into place as 'all' the pred does is

> control inflammation and not treat anything. And as for the tapering it has

> always been very slow and bit different to that described in other posts Once

> Eliot's lab tests are better after a flare we start cutting down on the

> predisone and this is how it works: full dose one day - 5 mgs the next for a

week

> and then 50 one day and 40 the next etc... When we get to 50 one day and 10

the

> next and have been there a week we start cutting down on the 50! And when we

> finally get down to 10 mgs on both days we taper by increments of 2.5 mg a

> week...So it's a LONG process but it has worked well. Eliot is also on a

> combination of MTX taken orally (liquid) 25 ml weekly and daily Cyclosporine

> (Neoral). I do hope this helps...

> What else is Aundrea taking? My thoughts are with you both.

> Chloe

> Mom to Eliot (systemic 10)

[Guest guest]

,

WAY TO GO to speak your mind and be assertive for the sake of your

daughter!!!!!!!!!!! I'm behind on posts and playing catch up right

now....hoping to read some good news about the rheumy calling you

back and starting a DMARD course of action.

Stacia and Hunter 8 systemic, iritis