Re: Am i tempting fate...

[Guest guest]

Drats, couldn't open the web site. Will try later.

Have no words of wisdom regarding the Prednisone, sorry:( Still in the

tapering mode ourselves.

Take care.

Patty

[Guest guest]

Helen, When we got to 10mgs a day with n I would decrease either by 1mg or sometimes even 1/2mg. It might be slower, but you may have more success this way. If you go slower you might be able to fool the body. It thinks it is getting 10, but it is really only getting 9.5 or 9. Good luck. I think tapering is half art and half science. (n, 15,systemic)

Am i tempting fate...

Hi guys...

help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild.

He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing.

This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week.

We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows.

I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run.

thanks for your input....

Hugs Helen, mom to (6,systemic)

p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now.

www.caringbridge.org/mn/nicholasb

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)

Dream of owning a home? Find out how in the First-time Home Buying Guide.

[Guest guest]

How do you taper the pred by such small doses???? The pills are soo small, I have a hard time cutting them in 1/2, I cant imagine trying to make them even smaller.

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "WILLIAM PRICE" >Reply- >>Subject: Re: Am i tempting fate... >Date: Wed, 18 Feb 2004 14:29:58 -0800 > >Helen, When we got to 10mgs a day with n I would decrease either by 1mg or sometimes even 1/2mg. It might be slower, but you may have more success this way. If you go slower you might be able to fool the body. It thinks it is getting 10, but it is really only getting 9.5 or 9. Good luck. I think tapering is half art and half science. (n, 15,systemic) > Am i tempting fate... > > > Hi guys... > > help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild. > > He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing. > > This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week. > > We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows. > > I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run. > > thanks for your input.... > > Hugs Helen, mom to (6,systemic) > > p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now. > > www.caringbridge.org/mn/nicholasb > > > > > > > > > >------------------------------------------------------------------------------ > Hugs..Helen > DH Dan > DS's (20)(14)(12)Zachary(9)(6) > DD (4) > > >------------------------------------------------------------------------------ > Dream of owning a home? Find out how in the First-time Home Buying Guide. > >------------------------------------------------------------------------------ >

[Guest guest]

They come in 1 or 5mg. I just cut the 1's in half. They are pretty small though.

Am i tempting fate... > > > Hi guys... > > help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild. > > He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing. > > This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week. > > We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows. > > I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run. > > thanks for your input.... > > Hugs Helen, mom to (6,systemic) > > p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now. > > www.caringbridge.org/mn/nicholasb > > > > > > > > > >------------------------------------------------------------------------------ > Hugs..Helen > DH Dan > DS's (20)(14)(12)Zachary(9)(6) > DD (4) > > >------------------------------------------------------------------------------ > Dream of owning a home? Find out how in the First-time Home Buying Guide. > >------------------------------------------------------------------------------ >

[Guest guest]

Hi Helen,

We've always had to be very cautious with our tapers, based on 's

history. You'll get other advice, and the best advice will probably be

from Nick's doctor, but the first thing I thought when I saw your

message was: if anything, I'd keep giving the same amount but instead of

breaking it up for two doses each day I'd see how he handled the same

dose taken only in the morning. Yours was the first message I've read

from todays deliveries, so you may very well have already heard the same

thing. I better start reading before I say anything else!

Aloha,

Georgina

Helen Burger wrote:

> Hi guys...

>

> help me out a little here..... seems to be doing very well, hes

> got the spark back, has more energy and the joint pain is mild.

>

> He is still on 5mg of pred 2x a day... orginally he was only suppose to

> be on this for 7 days when we were suppose to start tapering. Because of

> his labs, the rhuemy and I decided to slow down the taper and try

> cutting down the PM dose to 2.5mg. This didnt work and we ended up going

> back to the original dosing.

>

> This friday it will be 3 weeks since Nick started on the pred. Seeing

> as hes really doing quite well, i would like to start the slow tapering

> by cutting out 2.5mg each evening for a week.

>

> We see the rhuemy next wednesday, so I was thinking this would be good

> to see if we can taper and if it doesnt go well, then we she her next

> weds anyhows.

>

> I really dont want to call her to ask....so, do you think I should do

> this, or think i should leave him on the full dose till we see her next

> week. The rhuemy HATES pred. so I would think she would want Nick off it

> as quickly as possible. Im just feeling that each day he stays on it

> will make it harder in the long run.

>

> thanks for your input....

>

> Hugs Helen, mom to (6,systemic)

>

> p.s I started one of those caringbridge websites that was talking

> about. its been great, my husband was able to pass on the address to

> co-workers who have all thanked him because they understand soo much

> more now.

>

> www.caringbridge.org/mn/nicholasb <http://www.caringbridge.org/mn/nicholasb>

[Guest guest]

Hi,

Just wanting to add that prednisone is also available in 2.5mgs tablets.

We've had them all, I think, and used them in all sorts of combinations.

Aloha,

Georgina

WILLIAM PRICE wrote:

> They come in 1 or 5mg. I just cut the 1's in half. They are pretty

> small though.

>

> Re: Am i tempting fate...

>

> How do you taper the pred by such small doses???? The pills are soo

> small, I have a hard time cutting them in 1/2, I cant imagine trying

> to make them even smaller.

>

> Hugs Helen, mom to (6,systemic)

[Guest guest]

That's a good point, that I really forgot about. Instead of taking it twice a day to just once a day --that is usually the first kind of taper that we do.

Re: Am i tempting fate...

Hi Helen,We've always had to be very cautious with our tapers, based on 's history. You'll get other advice, and the best advice will probably be from Nick's doctor, but the first thing I thought when I saw your message was: if anything, I'd keep giving the same amount but instead of breaking it up for two doses each day I'd see how he handled the same dose taken only in the morning. Yours was the first message I've read from todays deliveries, so you may very well have already heard the same thing. I better start reading before I say anything else!Aloha,GeorginaHelen Burger wrote:> Hi guys...> > help me out a little here..... seems to be doing very well, hes > got the spark back, has more energy and the joint pain is mild.> > He is still on 5mg of pred 2x a day... orginally he was only suppose to > be on this for 7 days when we were suppose to start tapering. Because of > his labs, the rhuemy and I decided to slow down the taper and try > cutting down the PM dose to 2.5mg. This didnt work and we ended up going > back to the original dosing.> > This friday it will be 3 weeks since Nick started on the pred. Seeing > as hes really doing quite well, i would like to start the slow tapering > by cutting out 2.5mg each evening for a week.> > We see the rhuemy next wednesday, so I was thinking this would be good > to see if we can taper and if it doesnt go well, then we she her next > weds anyhows.> > I really dont want to call her to ask....so, do you think I should do > this, or think i should leave him on the full dose till we see her next > week. The rhuemy HATES pred. so I would think she would want Nick off it > as quickly as possible. Im just feeling that each day he stays on it > will make it harder in the long run.> > thanks for your input....> > Hugs Helen, mom to (6,systemic)> > p.s I started one of those caringbridge websites that was talking > about. its been great, my husband was able to pass on the address to > co-workers who have all thanked him because they understand soo much > more now.> > www.caringbridge.org/mn/nicholasb <http://www.caringbridge.org/mn/nicholasb>

[Guest guest]

Hi o,

Very happy to hear the news that your daughter was able to successfully

taper and wean from the steroids. The way it was explained to me, it's

not so much the amount of the taper but the overall percentage of the

dose being tapered. I think that mostly has to do with decreasing the

steroid dose after being on it for a long time and especially from the

moderate to higher doses. Moving from ten milligrams to, say, five

milligrams is too rapid in that it's a 50% drop. Too harsh on the body.

Maybe your daughter was sensitive and the percentage thing came into

play, even though she was taking a smaller amount?

Either way, it's very nice to hear about another child being able to

come off of it. I'm so thrilled that we have more options available

these days. When my son first got sick we put him on Methotrexate right

away and planned to take him off the steroids as soon as it " kicked in. "

Unfortunately, that was not enough to quiet the arthritis symptoms. We

did a step up approach, even added another DMARD, and he's remained on

oral steroids for close to 9 years, now. Fortunately, he HAS been able

to taper this time around, ex-tre-me-ly sl-ow-ly, and is now taking just

1mg a day!!!! I hope that the old days are past us now and forever more!

Aloha,

Georgina

o Salas wrote:

> My daughter was taking Orapred and the doctor

> recommended that we take it slower. At that point in

> time we went from 3 mg per day to 2 2/3 milligrams per

> day. He told me to reduce it by 1/3 mg every 10 days.

> So then she went to 2 1/3 -> 2 -> 1 2/3 -> 1 1/3 -> 1

> -> 2/3 -> 1/3 then finally zero after a long time.

> It was hard going below 2 mg. per day. She would

> start hurting and crying and we would up it back to 2.

> It is weird that such a small quantity (1/3 mg.)

> would affect her so much. I believe those cold fronts

> and barometric pressure were getting the best of her.

> She did succeed to stop taking it last month. The

> doctor told me that the Enbrel and Methotrexate would

> help her.

>

> o Salas

> (It-xetl, 8)

> --- Helen Burger <hburger64@...> wrote:

> Hi guys...

>

> help me out a little here..... seems to be

> doing very well, hes got the spark back, has more

> energy and the joint pain is mild.

>

> He is still on 5mg of pred 2x a day... orginally he

> was only suppose to be on this for 7 days when we were

> suppose to start tapering. Because of his labs, the

> rhuemy and I decided to slow down the taper and try

> cutting down the PM dose to 2.5mg. This didnt work and

> we ended up going back to the original dosing.

>

> This friday it will be 3 weeks since Nick started on

> the pred. Seeing as hes really doing quite well, i

> would like to start the slow tapering by cutting out

> 2.5mg each evening for a week.

>

> We see the rhuemy next wednesday, so I was thinking

> this would be good to see if we can taper and if it

> doesnt go well, then we she her next weds anyhows.

>

> I really dont want to call her to ask....so, do you

> think I should do this, or think i should leave him on

> the full dose till we see her next week. The rhuemy

> HATES pred. so I would think she would want Nick off

> it as quickly as possible. Im just feeling that each

> day he stays on it will make it harder in the long

> run.

>

> thanks for your input....

>

> Hugs Helen, mom to (6,systemic)

>

> p.s I started one of those caringbridge websites that

> was talking about. its been great, my husband was

> able to pass on the address to co-workers who have all

> thanked him because they understand soo much more now.

>

> www.caringbridge.org/mn/nicholasb

[Guest guest]

Hi Helen,

Even as I start this, I wonder if I should even say anything - tapering is such

an art, and sometimes a parent just needs to follow his or her instincts. I

don't know if I would start tapering daily - 2.5 mg is a large dose - and if he

is getting a total of 10mg a day - you are looking at dropping the total by 25%

the first day, and then by a larger percentage of the total dose each day. As

Rob's dose got smaller - we would lower it by smaller increments - so the body

could work down easier. Is Nick on the pills or liquid? Rob has always taken

the liquid Prednisolone - so lowering by minute amounts has not been

problematic, from a dosage perspective. Last winter, it took us over a year to

get from 27 mg daily, down to 3mg. When we went from 3mg to 1.5 mg, after

perfect labs, a great clincal exam at the Docs office and no pain or symptoms

for months, we sent him into a full flare after 3 days at the lower dose, with

liver and spleen involvement - landing him in the hospital. We raised the

steriods to 10mg a day. The flare continued and a month later he was back in

the hospital,with move liver, spleen and cardiac involvement (the cardiac

involvement was probably due to dehydration, as he ended up with a stomach virus

on top of it)So we were back up to 33mg a day. About a month later the labs

started looking good and we began a more agressive taper - intially, but have

slowed considerably as we approached then passed the year mark once more. We

have kept him at 3 mg since before Thanksgiving - neither I nor the Docs wanting

to repeat the holidays we had last year, and he has been doing well - though I

think the docs are really afraid of the taper now, even though we have

significantly raised his cyclosporine since then - because even at his last

appt, they decided to not lower the steriods for now.

I hope I haven't scared or discouraged you - and have been of some help. There

are no easy answers - I certainly don't have them - even felt maybe I shouldn't

say anything at all because we haven't been successful at a complete taper yet.

Each child is different - and certainly the sooner you can get Nick off the

steriods the better - even if it means going towards other medication to

facilitate success. (Gosh, I sound like I am writing a memo for work!)I would

suggest dropping the evening dose a little (mainly because Rob had a terrible

time sleeping while still on an evening dose - so we tackled that first) -

though if Nick seems to need the boost through the night, then perhaps a small

amount from the am and pm dose may be better. But I would drop it by one

increment - and then watch how he does until the appt before dropping it again.

I found with Rob that about 3 days after the drop would be when he would show

even small signs that the body was responding to the change, and maybe having

some symptoms - which I always called mini flares - because I would continue

with the lowered dose and it would resolve on it's own as the body adjusted.

The only time I dropped Rob's steriods a little more each day during a taper,

was when we were tapering him when we were treating his Minimal Change Disease -

before he developed his JRA symptoms - and that worked really well - the the

taper would go quickly and be successful - usually it would take about six

months before a flare of the MCD would occur.

Sorry - I seem to be going on and on. I hope you and Nick are successful and

can quickly wean him from the steriods.

Val

Rob's Mom (6,systemic)

In a message dated 2/18/2004 4:37:20 PM Eastern Standard Time,

hburger64@... writes:

> Hi guys...

> help me out a little here..... seems to be doing very well, hes got

the spark back, has more energy and the joint pain is mild.

> He is still on 5mg of pred 2x a day... orginally he was only suppose to be on

this for 7 days when we were suppose to start tapering. Because of his labs, the

rhuemy and I decided to slow down the taper and try cutting down the PM dose to

2.5mg. This didnt work and we ended up going back to the original dosing.

> This friday it will be 3 weeks since Nick started on the pred. Seeing as hes

really doing quite well, i would like to start the slow tapering by cutting out

2.5mg each evening for a week.

> We see the rhuemy next wednesday, so I was thinking this would be good to see

if we can taper and if it doesnt go well, then we she her next weds anyhows.

> I really dont want to call her to ask....so, do you think I should do this, or

think i should leave him on the full dose till we see her next week. The rhuemy

HATES pred. so I would think she would want Nick off it as quickly as possible.

Im just feeling that each day he stays on it will make it harder in the long

run.

> thanks for your input....

> Hugs Helen, mom to (6,systemic)

> p.s I started one of those caringbridge websites that was talking about.

its been great, my husband was able to pass on the address to co-workers who

have all thanked him because they understand soo much more now.

> www.caringbridge.org/mn/nicholasb

>

>

>

>

>

>

>

> Hugs..Helen

> DH Dan

> DS's (20)(14)(12)Zachary(9)(6)

> DD (4)

>

>

>

> Dream of owning a home? Find out how in the First-time Home Buying Guide.

>

>

>

[Guest guest]

In a message dated 2/19/04 1:39:56 PM Central Standard Time, hburger64@... writes:

Onto my next question.. when they increase the MTX, in what stages do they do it???? should i expect a small increase or a larger one. hes on 10mg a week now, and i know if we get to 17.5mg he will start the injections. I guess i want to talk to him a little about the possiblity if its likey to be a bigger jump. This way he wont freek so much in her office. He always does better when im open and honet with him as to what will happen.

Hi Helen,

s rheumy always raised him 2.5mg at a time but it's not uncommon for a rheumy to go from 10mg to 15mg.

Good luck with the pred taper and remember the body goes into shock the first 3 days but not always.

Hugs

Becki and 5 systemic

[Guest guest]

Dear Val, Very well said.

Re: Am i tempting fate...

Hi Helen,Even as I start this, I wonder if I should even say anything - tapering is such an art, and sometimes a parent just needs to follow his or her instincts. I don't know if I would start tapering daily - 2.5 mg is a large dose - and if he is getting a total of 10mg a day - you are looking at dropping the total by 25% the first day, and then by a larger percentage of the total dose each day. As Rob's dose got smaller - we would lower it by smaller increments - so the body could work down easier. Is Nick on the pills or liquid? Rob has always taken the liquid Prednisolone - so lowering by minute amounts has not been problematic, from a dosage perspective. Last winter, it took us over a year to get from 27 mg daily, down to 3mg. When we went from 3mg to 1.5 mg, after perfect labs, a great clincal exam at the Docs office and no pain or symptoms for months, we sent him into a full flare after 3 days at the lower dose, with liver and spleen involvement - landing him in the hospital. We raised the steriods to 10mg a day. The flare continued and a month later he was back in the hospital,with move liver, spleen and cardiac involvement (the cardiac involvement was probably due to dehydration, as he ended up with a stomach virus on top of it)So we were back up to 33mg a day. About a month later the labs started looking good and we began a more agressive taper - intially, but have slowed considerably as we approached then passed the year mark once more. We have kept him at 3 mg since before Thanksgiving - neither I nor the Docs wanting to repeat the holidays we had last year, and he has been doing well - though I think the docs are really afraid of the taper now, even though we have significantly raised his cyclosporine since then - because even at his last appt, they decided to not lower the steriods for now. I hope I haven't scared or discouraged you - and have been of some help. There are no easy answers - I certainly don't have them - even felt maybe I shouldn't say anything at all because we haven't been successful at a complete taper yet. Each child is different - and certainly the sooner you can get Nick off the steriods the better - even if it means going towards other medication to facilitate success. (Gosh, I sound like I am writing a memo for work!)I would suggest dropping the evening dose a little (mainly because Rob had a terrible time sleeping while still on an evening dose - so we tackled that first) - though if Nick seems to need the boost through the night, then perhaps a small amount from the am and pm dose may be better. But I would drop it by one increment - and then watch how he does until the appt before dropping it again. I found with Rob that about 3 days after the drop would be when he would show even small signs that the body was responding to the change, and maybe having some symptoms - which I always called mini flares - because I would continue with the lowered dose and it would resolve on it's own as the body adjusted.The only time I dropped Rob's steriods a little more each day during a taper, was when we were tapering him when we were treating his Minimal Change Disease - before he developed his JRA symptoms - and that worked really well - the the taper would go quickly and be successful - usually it would take about six months before a flare of the MCD would occur.Sorry - I seem to be going on and on. I hope you and Nick are successful and can quickly wean him from the steriods. ValRob's Mom (6,systemic)In a message dated 2/18/2004 4:37:20 PM Eastern Standard Time, hburger64@... writes:> Hi guys... > help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild.> He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing.> This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week.> We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows.> I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run.> thanks for your input....> Hugs Helen, mom to (6,systemic)> p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now.> www.caringbridge.org/mn/nicholasb> > > > > > > > Hugs..Helen > DH Dan > DS's (20)(14)(12)Zachary(9)(6) > DD (4)> > > > Dream of owning a home? Find out how in the First-time Home Buying Guide. > > >

[Guest guest]

HI All:

A friend of mine (she has Lupus - internal) told me today that Caitlin

probably had a positive RF (now negative) because she had a fever. Is this a

fact?

That you can have a positive RF because of a fever??????

Thanks all.

Patty

[Guest guest]

In a message dated 2/19/04 11:18:09 AM Eastern Standard Time,

carneyval@... writes:

<< ting his Minimal Change Disease - before he developed his JRA symptoms -

and that worked really well - the the taper would go quickly and be successful

- usually it would take about six months before a flare of the MCD would occur.

Sorry - I seem to be going on and on. I hope you and Nick are successful

and can quickly wean him from the steriods.

Val

Rob's Mom (6,systemic)

>>

Hi Val:

I read your post with great interest as we are still in the tapering mode

with Caitlin on the Prednisone. Your son's experience is certainly a wake up

call to really take the tapering slow. Thank you for sharing.

A question: What is minimal change disease?

Thanks.

Patty

[Guest guest]

Hi Patti,

Your friend means well but having a fever has nothing to do with having a positive RF factor.It is very uncommon in JRA especialy systemic and pauci.Poly kids with a positive RF factor are more likely to have the adult form of RA.

If you break the subtypes up you have

Pauci-ANA negative

Pauci-ANA positive

Poly-RF negative

Poly-RF positive

Systemic

Hugs

Becki and 5 systemic

[Guest guest]

Val,

Im so glad you did post... i value yours and everyones advice. Please never hesitate to voice your opinion where im concerned. Its the only way im going to learn things. I need to hear what im doing wrong as well as right if im ever going to do the very best by .

Thank you all who posted concerning tapering. it does sound like each child is a little different in how they handle tapers and very rhuemy has a different way of doing it.

I don't know about the rest of you, but i have a hard time making Nick take a bunch of pills day in and day out when hes doing well. I know this is my heart talking, not my head. I know if he were not on the medication then he would not be doing so well. It was just 3 weeks ago that Nick was doing so poorly and now looking at him you would think theres nothing wrong. Strange how easy it is to forget the bad days.

I have decided to forge ahead and try cutting the pred down 2.5mg a day. I know a lot of you will think this is a lot and i tend to agree. But i think I have to at least try to see what the results will be. perhaps Nick will be one of those kids who can taper well. We wont know till we try. Hes only been on them for 3 weeks so im also taking that into account. if he were on them longer I would more than likely do it slower. I just fell like i should be do something to help get him off them. I think the rhuemy will agree too. It sounds like shes already planning on upping the mtx next time we see her anyhows. I will keep Nick at the 7.5mg a day level till we see her and take it from there, as long as hes tolerating it ok.

Onto my next question.. when they increase the MTX, in what stages do they do it???? should i expect a small increase or a larger one. hes on 10mg a week now, and i know if we get to 17.5mg he will start the injections. I guess i want to talk to him a little about the possiblity if its likey to be a bigger jump. This way he wont freek so much in her office. He always does better when im open and honet with him as to what will happen.

thanks guys,,

HUgs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: carneyval@... >Reply- > >Subject: Re: Am i tempting fate... >Date: Thu, 19 Feb 2004 11:08:06 -0500 > >Hi Helen, >Even as I start this, I wonder if I should even say anything - tapering is such an art, and sometimes a parent just needs to follow his or her instincts. I don't know if I would start tapering daily - 2.5 mg is a large dose - and if he is getting a total of 10mg a day - you are looking at dropping the total by 25% the first day, and then by a larger percentage of the total dose each day. As Rob's dose got smaller - we would lower it by smaller increments - so the body could work down easier. Is Nick on the pills or liquid? Rob has always taken the liquid Prednisolone - so lowering by minute amounts has not been problematic, from a dosage perspective. Last winter, it took us over a year to get from 27 mg daily, down to 3mg. When we went from 3mg to 1.5 mg, after perfect labs, a great clincal exam at the Docs office and no pain or symptoms for months, we sent him into a full flare after 3 days at the lower dose, with liver and spleen involvement - landing him in the hospital. We raised the steriods to 10mg a day. The flare continued and a month later he was back in the hospital,with move liver, spleen and cardiac involvement (the cardiac involvement was probably due to dehydration, as he ended up with a stomach virus on top of it)So we were back up to 33mg a day. About a month later the labs started looking good and we began a more agressive taper - intially, but have slowed considerably as we approached then passed the year mark once more. We have kept him at 3 mg since before Thanksgiving - neither I nor the Docs wanting to repeat the holidays we had last year, and he has been doing well - though I think the docs are really afraid of the taper now, even though we have significantly raised his cyclosporine since then - because even at his last appt, they decided to not lower the steriods for now. > >I hope I haven't scared or discouraged you - and have been of some help. There are no easy answers - I certainly don't have them - even felt maybe I shouldn't say anything at all because we haven't been successful at a complete taper yet. Each child is different - and certainly the sooner you can get Nick off the steriods the better - even if it means going towards other medication to facilitate success. (Gosh, I sound like I am writing a memo for work!)I would suggest dropping the evening dose a little (mainly because Rob had a terrible time sleeping while still on an evening dose - so we tackled that first) - though if Nick seems to need the boost through the night, then perhaps a small amount from the am and pm dose may be better. But I would drop it by one increment - and then watch how he does until the appt before dropping it again. I found with Rob that about 3 days after the drop would be when he would show even small signs that the body was responding to the change, and maybe having some symptoms - which I always called mini flares - because I would continue with the lowered dose and it would resolve on it's own as the body adjusted. > >The only time I dropped Rob's steriods a little more each day during a taper, was when we were tapering him when we were treating his Minimal Change Disease - before he developed his JRA symptoms - and that worked really well - the the taper would go quickly and be successful - usually it would take about six months before a flare of the MCD would occur. > >Sorry - I seem to be going on and on. I hope you and Nick are successful and can quickly wean him from the steriods. > >Val >Rob's Mom (6,systemic) > >In a message dated 2/18/2004 4:37:20 PM Eastern Standard Time, hburger64@... writes: > > > Hi guys... > > help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild. > > He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing. > > This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week. > > We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows. > > I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run. > > thanks for your input.... > > Hugs Helen, mom to (6,systemic) > > p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now. > > www.caringbridge.org/mn/nicholasb > > > > > > > > > > > > > > > > Hugs..Helen > > DH Dan > > DS's (20)(14)(12)Zachary(9)(6) > > DD (4) > > > > > > > > Dream of owning a home? Find out how in the First-time Home Buying Guide. > > > > > >

[Guest guest]

Thank you Becki for the clarification. I thought it sounded strange. Can

you be RF positive and then negative? What does that idicate if once + and then

-?

Take care.

Patty

[Guest guest]

In a message dated 2/19/04 8:03:35 PM Central Standard Time, Emeraldsx3@... writes:

Thank you Becki for the clarification. I thought it sounded strange. Can you be RF positive and then negative? What does that idicate if once + and then -?

Hi Patty,

I can''t completely answer your question.I check out Arthritis Insight.com every now and then.Thats where I found Katherin's post about Christian.Some adults go the antibiotic route.Not what you are thinking,major antibiotic therapy that makes the arthritis much worse then gets much better and even dissapears for some.Many of these adults see their RF factor titer go down.

If Caitlen has tested negative for RF factor take it to heart. is ANA negative and RF negative and he was retested at CIncinnati Childrens for the 3 yr safety study of Enbrel.Fifteen months after the original testing.

ANA needs to be checked from time to time I guess.

Positive RF and ANA is almost always negative for systemic kids.I wouldn't worry to much about it.I do however recommend reading posts about it and educate yourself.You never know if your child is going to be one of the rare ones.

Hugs

Becki and 5 systemic

[Guest guest]

Helen- I wish I could offer you some advice. We would all love to see

Nick off the pred. Listen to your gut. I would call your Rhummey. I

think that in this business this is what they are there for!

I checked out Nick's site. What an adorable boy. You did a really

good job!

Alia and Caroline, age 2, pauci and uveitis

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

>

[Guest guest]

Hi Helen,

It's kind of hard to answer the shock question.It's called cortisol withdrawl.The adrenal glands can't produce normaly once synthetic cortisone has been administered for a couple weeks.When you drop the pred dose the adrenal gland can't catch up.The first 3 days can be rough,for us day 3 would be the roughest.If it's just cortisol withdrawl symptoms should calm down within a few days.If symptoms persist it is most likely a flareup of the JRA.Another reason to try and wait it out a few days is because the symptoms of cortisol withdrawl mimic arthritis.Someone taking pred for a non related arthritis disease can experiance arthritis symptoms while tapering.

Type in cortisol withdrawl and I am sure you will get a better understanding of how the whole process works.

Sorry to hear Nicks symptoms came back.I hope things calm down in a few days.This is a very frustraiting time, I know.Watch Nick carefuly and go with your gut.If you feel it's the arthritis add the 2.5mg back to the night time dose.With if things got too bad it always meant going back to 30 mg and starting all over again.Just going back to the original dose or even trying to add a couple more mg wouldn't work.

Keep us updated.

Hugs

Becki and 5 systemic

[Guest guest]

Becki,

Thanks for the info on the MTX increases.

when you talk about "going into shock" with the pred taper, what exactly does that mean???

ive now given Nick 2 doses of the 1/2pills in the PM. I have already noticed a increase of symptoms.

He was up in the night wanting his hot water bottle. Didnt want to go to school, but we went out for the bus anyway ( I always encourage him and if he really cant cope to go to the nurse and she will call me. Once hes up and moving more he does better) Today of all days the bus was late ( more snow and ice) and having to stand at the bus stop bothered him. He started crying and came home. He laid down with this HWB and after 45 mins was doing better. I had to run to the school to collect my daughter from speech so he came along and i dropped him off 1 hr late for school, but at least hes there.

If nothing else, we can see that the MTX is not working yet. IM going to stick at the 1/2 pills and try and tough it out as long as Nick doesnt get too bad. Does it get better if you are able to go soo many days without increasing it back up.????? how many days???

Hugs Helen, mom to

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: Arthurnator@... >Reply- > >Subject: Re: Am i tempting fate... >Date: Thu, 19 Feb 2004 16:24:42 EST > >In a message dated 2/19/04 1:39:56 PM Central Standard Time, >hburger64@... writes: > > > > Onto my next question.. when they increase the MTX, in what stages do they > > do it???? should i expect a small increase or a larger one. hes on 10mg a > > week now, and i know if we get to 17.5mg he will start the injections. I guess i > > want to talk to him a little about the possiblity if its likey to be a > > bigger jump. This way he wont freek so much in her office. He always does better > > when im open and honet with him as to what will happen. > > > >Hi Helen, >s rheumy always raised him 2.5mg at a time but it's not uncommon for a >rheumy to go from 10mg to 15mg. >Good luck with the pred taper and remember the body goes into shock the first >3 days but not always. >Hugs >Becki and 5 systemic Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer!

[Guest guest]

Helen, We have found day 1-3 are the worst in the taper. If you can tough it out those days then things tend to settle down. When you taper a few joints may act up, but it shouldn't be a full flare. If that is the case then you might want to go back up. (n, 15)

Re: Am i tempting fate... >Date: Thu, 19 Feb 2004 16:24:42 EST > >In a message dated 2/19/04 1:39:56 PM Central Standard Time, >hburger64@... writes: > > > > Onto my next question.. when they increase the MTX, in what stages do they > > do it???? should i expect a small increase or a larger one. hes on 10mg a > > week now, and i know if we get to 17.5mg he will start the injections. I guess i > > want to talk to him a little about the possiblity if its likey to be a > > bigger jump. This way he wont freek so much in her office. He always does better > > when im open and honet with him as to what will happen. > > > >Hi Helen, >s rheumy always raised him 2.5mg at a time but it's not uncommon for a >rheumy to go from 10mg to 15mg. >Good luck with the pred taper and remember the body goes into shock the first >3 days but not always. >Hugs >Becki and 5 systemic

Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer!

[Guest guest]

...

thanks for the input. I think you describe to a tee.... I dont think hes flaring, but some joints are "acting up"

Ive not heard from the school os no news is good news!!!

If we get though the weekend then we sould be ok at the 7.5mg dose until we see the rhuemy on Wednesday and she what she has to say about everything.

thanks

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "WILLIAM PRICE" >Reply- >>Subject: Re: Am i tempting fate... >Date: Fri, 20 Feb 2004 12:05:35 -0800 > >Helen, We have found day 1-3 are the worst in the taper. If you can tough it out those days then things tend to settle down. When you taper a few joints may act up, but it shouldn't be a full flare. If that is the case then you might want to go back up. (n, 15) > Re: Am i tempting fate... >Date: Thu, 19 Feb 2004 16:24:42 EST > >In a message dated 2/19/04 1:39:56 PM Central Standard Time, >hburger64@... writes: > > > > Onto my next question.. when they increase the MTX, in what stages do they > > do it???? should i expect a small increase or a larger one. hes on 10mg a > > week now, and i know if we get to 17.5mg he will start the injections. I guess i > > want to talk to him a little about the possiblity if its likey to be a > > bigger jump. This way he wont freek so much in her office. He always does better > > when im open and honet with him as to what will happen. > > > >Hi Helen, >s rheumy always raised him 2.5mg at a time but it's not uncommon for a >rheumy to go from 10mg to 15mg. >Good luck with the pred taper and remember the body goes into shock the first >3 days but not always. >Hugs >Becki and 5 systemic > > >------------------------------------------------------------------------------ > Say "good-bye" to spam, viruses and pop-ups with MSN Premium -- free trial offer! > >------------------------------------------------------------------------------ >

[Guest guest]

My daughter is on a liquid oral prednisone, called Pediapred. It is so easy to taper in minute increments. The rest of her meds are in pill form, but given how much we go up and down with 'tapers' it has been easier to stay with the liquid.

--

Lynn

Mom to:

Mickey (10), systemic jra since 3

Kinsey(7), wonderful sister to Mickey

-----

From: " Helen Burger " <hburger64@...>

Reply-

Date: Wed, 18 Feb 2004 18:45:01 -0600

Subject: Re: Am i tempting fate...

How do you taper the pred by such small doses???? The pills are soo small, I have a hard time cutting them in 1/2, I cant imagine trying to make them even smaller.

Hugs Helen, mom to (6,systemic)

Hugs..Helen

DH Dan

DS's (20)(14)(12)Zachary(9)(6)

DD (4)

>From: " WILLIAM PRICE " >Reply- >>Subject: Re: Am i tempting fate... >Date: Wed, 18 Feb 2004 14:29:58 -0800 > >Helen, When we got to 10mgs a day with n I would decrease either by 1mg or sometimes even 1/2mg. It might be slower, but you may have more success this way. If you go slower you might be able to fool the body. It thinks it is getting 10, but it is really only getting 9.5 or 9. Good luck. I think tapering is half art and half science. (n, 15,systemic) > Am i tempting fate... > > > Hi guys... > > help me out a little here..... seems to be doing very well, hes got the spark back, has more energy and the joint pain is mild. > > He is still on 5mg of pred 2x a day... orginally he was only suppose to be on this for 7 days when we were suppose to start tapering. Because of his labs, the rhuemy and I decided to slow down the taper and try cutting down the PM dose to 2.5mg. This didnt work and we ended up going back to the original dosing. > > This friday it will be 3 weeks since Nick started on the pred. Seeing as hes really doing quite well, i would like to start the slow tapering by cutting out 2.5mg each evening for a week. > > We see the rhuemy next wednesday, so I was thinking this would be good to see if we can taper and if it doesnt go well, then we she her next weds anyhows. > > I really dont want to call her to ask....so, do you think I should do this, or think i should leave him on the full dose till we see her next week. The rhuemy HATES pred. so I would think she would want Nick off it as quickly as possible. Im just feeling that each day he stays on it will make it harder in the long run. > > thanks for your input.... > > Hugs Helen, mom to (6,systemic) > > p.s I started one of those caringbridge websites that was talking about. its been great, my husband was able to pass on the address to co-workers who have all thanked him because they understand soo much more now. > > www.caringbridge.org/mn/nicholasb > > > > > > > > > >------------------------------------------------------------------------------ > Hugs..Helen > DH Dan > DS's (20)(14)(12)Zachary(9)(6) > DD (4) > > >------------------------------------------------------------------------------ > Dream of owning a home? Find out how in the First-time Home Buying Guide. > >------------------------------------------------------------------------------ >