Re: Re: starting prednisone

[Guest guest]

Well here is more insight to confuse you. When n flared previously we

would put her on prednisone and slowly taper. That rheumy would not add

anything to the mix. Her summers were always great, it is always hard in

the winter. One year when she flared , we didn't go on prednisone and we

bumbled along and she slowly came out of the flare. Now mind you, n

never gets the fevers when she flares. She only had them at onset. This

last time she flared she was put on steroids and mtx. Recently, she had her

wrists injected by a new doctor.( which worked pretty well). She just

flared with this last cold, and n has held off on the prednisone. Her

energy is about back to normal, but only time will tell if we stay off the

hard stuff.

The problem with steroids is that no one can tell the magical dose. Each

time it may be different. Just look at the kids on the list. And then you

don't know how long they have to stay at a high amount, or when it is safe

to taper. It is a bit of a guessing game, and can be nerve wracking for us

parents. n doesn 't want to go on steroids this time , because she

says that she hates the tapers.

But after being long winded, I would think it might be time to move up to

mtx. Just my humble opinion. and n

Original Message -----

From: " sonia1md " <sonia1md@...>

< >

Sent: Tuesday, November 16, 2004 12:25 PM

Subject: Re: starting prednisone

>

>

> --

> Actually, Helen you made a lot of sense. I guess when I compare

> Aundrea to the other kids on this list, I also come away thinking

> that I guess were doing o.k. as far as how challenging it could be.

>

> But, I definately understand what your saying about upping the DMARD

> and then making the efforts to decrease the pred since it just masks

> the symptoms.

>

> Aundrea is on 200 mg. of Plaquenil daily. I think that might be the

> maximum dose that they give to kids. I wonder what drug we would be

> looking at next? I think said that n is on enbrel but

> from what I can tell on the list lots of kids are taking Methotrexate.

>

> You know what kind of has me worried is that we are going into flu

> season and doesn't pred decrease your immune system. Have you found

> that Nick is getting more illnesses since he has been on the steroids?

>

> Makes me wish I could home-school. It sounds like Nick and Aundrea

> enjoyed a similar summer. She played softball, swam every day and got

> plenty of rest. When we saw the rheumy in Sept. it was all smiles as

> to how great everything was. And like you I was able to leave the

> health journal behind! Even got me thinking that we should be

> getting ready to take her off the Plaquenil. But you know you read

> that some kids do actually outgrow this dreadful disease so I thought

> she might have been one of the lucky ones.

>

> I really do appreciate your taking the time to remind me of Nicks

> history and how is year has gone. It kind of reassured me that I am

> doing the right thing with Aundrea.

>

> Thanks,

>

> (Drea age 9 systemic)

>

>

>

> - In , " hburger64 " <hburger64@h...> wrote:

> >

> > -Hi ...

> >

> > i hope Aundrea starts to feel the benefit of the prednisone soon.

> > hopefully she will wake from her nap and feel a little better. Its

> > sad to read of so many of the systemic kids struggling now, hurts

> my

> > heart.

> >

> > also had a great summer, he could sleep in when he wanted,

> > sometimes as much as 14-15 hours. He was in the pool everyday,

> which

> > i think was great exercise for his joints. We went 3 months with

> no,

> > or hardly any symptoms.One rhuemy visit i actually had NO journal

> to

> > take because nothing happened! I was begnning to think that we had

> > this thing beat, although all be it, though medication.

> > seems to flare now everytime we try and lower his

> > prednisone. When he was 1st put on mtx and prednisone ( 1st week in

> > feb) he was at 10mg of mtx and 10mg of prednisone....he has flared

> 4

> > times since then, each time because of a prednisone taper..the pred

> > is always put back up, although not as high as it was and the mtx

> > was increased.

> > We have gone from 10 to 15 to 17.5 to 20mg of MTX. His prednisone

> > is currently at 3mg... We were down to 5mg of pred in March, but as

> > you can see we have only been able to get rid of 2mg in 7 months.

> > The object, I believe, is to up the pred back until the increase in

> > MTX helps the symptoms and the pred can start to be tapered again.

> > Its a vicious cirlce. As Nicks rhuemy says, we are always chasing

> > our tails....

> >

> > Nick is now maxed out on MTX ( according to body weight). Im sure

> > our next step will be enbrel, but we are not there yet. Theres

> still

> > hope that this last increase in MTX will be " the one " and we can

> > continue the pred taper next month ( ok, im kidding myself here,

> but

> > still).

> >

> > I still think Nick has a milder case than a lot of the kids on the

> > list... I cant help but think of poor Robbie, on such high doses of

> > prednisone and STILL having the fevers. Even with Nicks mild case,

> I

> > see just how sick he becomes and I can only imagine just how much

> > sicker the others must get. This disease suxs.

> >

> > So I guess my long winded ( sorry) answer to your question is, that

> > anytime Nick flares, his prednisone is increased back to where he

> > was doing ok with it and his DMARD is increased at the same time.

> We

> > wait to give the DMARD a chance to start to work and then begin the

> > tapering cycle again.

> >

> > Make sense???? IM not sure it does to me!! LOL

> >

> > Hugs Helen and (7,systemic)

> >

> > -- In , " sonia1md " <sonia1md@y...> wrote:

> > >

> > > Thanks for all of your comments regarding the pred as well as

> > > mentioning your concerns. I always learn so much from everyone

> on

> > > this list.

> > >

> > > I recognize what you guys are saying about not changing the

> DMARDS.

> > >

> > > Aundrea has been on the Plaquenil since last March. After a

> > couple

> > > of months she started doing wonderful. Her last flare that put

> > her

> > > in bed for a week was this past July. The problem seems to be

> > that

> > > this is the time of year (at least according to how things went

> > last

> > > year) that things start to spin out of control. Apparently, that

> > is

> > > true for a lot of the systemics.

> > >

> > > I guess from what I can understand the rheumy wants to try this

> > > tapered dose of pred and if it doesn't keep things at bay then

> she

> > > will consider other drugs.

> > >

> > > We have only been going to this doctor since last March and thats

> > > when she put Aundrea on the Plaquenil. Until this month she was

> > > doing great.

> > >

> > > Tell me what you guys have seen as the normal course of events

> > that

> > > your doctors have done with meds during a flare.

> > >

> > > Meanwhile, Aundrea has just gone to lay down for another nap and

> I

> > am

> > > hoping to see some real improvement when she wakes up!

> > > -

> > > P.S. you are right about the crutches being a problem with her

> > > wrists. But until today it was the right knee that was causing

> > the

> > > most pain and I thought if she could get away with not bearing as

> > > much weight on it that it might help. I stopped by Aundrea's

> > primary

> > > doctors office and he gave me a script for the crutches. I guess

> > it

> > > can't hurt to try them.

> > >

> > > (Drea age 9 systemic)

> > > -- In , " hburger64 " <hburger64@h...>

> wrote:

> > > >

> > > > -..

> > > >

> > > > Sorry about the prednisone.. It's such a love it/hate it drug.

> > Are

> > > > they changing any of her other meds. I'm just conerned that a

> > quick

> > > > burst of prednisone is not helping the underlaying trend that

> it

> > > > seems Aundreas symptoms are getting worse???? Obviously

> > something

> > > is

> > > > going on with her that her current meds are not doing enough to

> > > keep

> > > > under control.

> > > >

> > > > I hope im not being too outspoken here, just voicing my

> opinion,

> > > for

> > > > what its worth ))))

> > > >

> > > > What did he say about the crutches?? wont they be too hard on

> > her

> > > > wrists if shes also having wrist problems.??

> > > >

> > > > Hope she starts to feel better soon, im sure she will on the

> > pred.

> > > >

> > > > Hugs Helen and (7,systemic)

> > > >

> > > >

> > > > -- In , " sonia1md " <sonia1md@y...>

> wrote:

> > > > >

> > > > > Hello everyone,

> > > > >

> > > > > Well, I called the doctor today to see about getting Aundrea

> > some

> > > > > crutches and her doc felt it was time to start Aundrea on

> > > > > Prednisone. I was kind of leary about it, but when I looked

> > back

> > > > at

> > > > > her health jounal I could see how everything just really went

> > > down

> > > > > hill last winter and her rheumy is hoping that the pred will

> > stop

> > > > the

> > > > > flare in its tracks before it becomes harder to manage.

> > > > >

> > > > > So I gave Aundrea her first dose this morning. She is

> > starting

> > > on

> > > > > 20mg a day and will then taper down 5 mg. every 5 days. (Does

> > > that

> > > > > dosing seem normal to you guys?)

> > > > >

> > > > > Some of you might recall a year ago when they prescribed

> > > > prednisone

> > > > > for Aundrea and everyone was so baffled as to why she wasn't

> > > > > improving. Later, I discovered the pills hidden all over the

> > > > house.

> > > > > Well, today I stood right beside her and watched her take

> > every

> > > > one

> > > > > of them. She was a real trooper about it, but then again she

> > is

> > > > in

> > > > > so much pain that I think she might try anything.

> > > > >

> > > > > How long do you think it will take before we start seeing

> some

> > > > relief

> > > > > with the use of the pred?

> > > > >

> > > > > (Aundrea age 9 systemic)

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I don't recall the sweats with but remember all to well the hunger.He

would cry and scream for food,sneak food out of the fridge or just stand there

and shove stuff in his mouth as fast as he could.

Keep an abudance of fruit in the house for snack time especialy those high in

water content.The water will make Aundrea feel full and they have very few

calories.

As the dose gets lower so will the appetite and your grocery bill,lol

Hugs

Becki and 6 systemic

[Guest guest]

In a message dated 11/16/2004 2:37:34 PM Central Standard Time,

sonia1md@... writes:

Aundrea is on 200 mg. of Plaquenil daily. I think that might be the

maximum dose that they give to kids.

Hi Aundrea, my daughter is on 400 mg of Plaquenil a day. Good luck. Kim

[Guest guest]

Hi Becki & ,

Ayiyi the hunger - even before the pulses, Robbie has been hungry all the time

since we jumped to 43 mg - a side affect we didn't see when it was bumped up to

18 mg last spring! And while in the hospital he was constantly hungry -

shovelling food in. I have to keep telling him to slow down - that the food

isn't going anywhere. Hang in there , it does let up when the dose is

tapered.

Val

Rob's Mom (7,systemic)

In a message dated 11/17/2004 2:07:08 PM Eastern Standard Time,

Arthurnator@... writes:

>

>Hi ,

>I don't recall the sweats with but remember all to well the hunger.He

>would cry and scream for food,sneak food out of the fridge or just stand there

>and shove stuff in his mouth as fast as he could.

>Keep an abudance of fruit in the house for snack time especialy those high in

>water content.The water will make Aundrea feel full and they have very few

>calories.

>As the dose gets lower so will the appetite and your grocery bill,lol

>Hugs

>Becki and 6 systemic

>

>

>

[Guest guest]

Hi ,

Josh is in the same boat right now. Back on the prednisone. We tried a

week's worth hoping for a miracle and the relief came very quick but

wasn't quite enough to kick things. Once the prescription was done, we

were back to square one. It was very good to know that he could take it

for a week and have no ill effects coming off of it but, realistically,

we knew he needed more. Doctor gave us another prescription for a two

week burst of 20mgs a day and then 2 weeks at every other day. Things

seemed to be going really well but, again, when we got to the alternate

days off Josh wasn't in great shape. Didn't want to admit that he could

again need daily doses but once we changed from no pred on alternate

days to 10mgs on those days, things have gotten much better.

No sweats for Josh, in all the years of his taking corticosteroids, but

his appetite is once again tremendous, due to the dreaded prednisone

munchies! Becki, thanks for the reassurance. It's only temporary but -

I'm not kidding - this boy can eat an entire 12 inch subway sub and

start feeling hungry again as little as an hour later! I'd forgotten how

ravenous they can become. His weight, though, has remained pretty

stable. I don't know where it's all going.

, I am so sorry that Aundrea is flaring. I hope that it will be

short-lived. Just a bump in the road. She was doing so well for all

those months in between. You know it's possible to have control over the

arthritis, it's often just a matter of fiddling with meds to get things

back. Josh has systemic yet he's another one who takes Plaquenil. With

no apparent ill effects. He started it about a year after diagnosis,

adding it to the cocktail of NSAID, Prednisone and oral Methotrexate

because the arthritis continued to be very active. (Our major turning

point was switching from MTX pills to injectable.) Josh had been taking

200mg a day as well but is now taking 300mg a day since we re-started

it, for this flare. (He weighs around 86 pounds. He's still real little

for his age.)

Josh also went through the experience of using crutches, for a

non-arthritis-related injury (a bad gash on the sole of his foot) to

help him getting around. As someone else mentioned, it turned out to be

very hard on his wrists. Soon, the pain in his wrists was worse than in

his lower extremities! He stopped using the crutches after just a couple

days. Maybe that won't be a similar problem for your Audrea.

Please keep us updated on how the oral steroid tapering process goes.

Some have a much easier time of it. They use it when needed, benefit

from it, and can taper off rapidly and resume normal life. I hope

everything works as planned and Aundrea has the benefits of just a short

pred burst to head off this flare, before it has a chance to progress.

Have you spoken with the doctor about the possibility of a joint

injection in that stubborn right knee? Maybe that might be a

viable option in lieu of adding another DMARD if that's the only joint

still affected after the steroid trial?

I thought it was just wonderful, that Aundrea was able to describe her

JRA experience so eloquently. My daughter Kayla loves to write, too. Not

just for assignments but as a personal pleasure, something Josh never

had much of a liking for. You're right, about it being a great outlet

for one's emotions. Sharing her story with the rest of the JRA community

was a very thoughtful gesture. I hope Aundrea felt alright about that?

Please let her know that we do appreciate it. And please let her know

that we're all looking forward to her feeling lots better ... soon!

Aloha,

Georgina

Arthurnator@... wrote:

> Hi ,

> I don't recall the sweats with but remember all to well the hunger.He

> would cry and scream for food,sneak food out of the fridge or just stand there

> and shove stuff in his mouth as fast as he could.

> Keep an abudance of fruit in the house for snack time especialy those high in

> water content.The water will make Aundrea feel full and they have very few

> calories.

> As the dose gets lower so will the appetite and your grocery bill,lol

> Hugs

> Becki and 6 systemic