RE: Prednisone Taper? - Long

[Guest guest]

Alia,

Most insurance companies won’t cover

enbrel unless other meds, such as methotrexate, have either not worked well

enough because the cost of enbrel is so high.

My daughter doesn’t have uveitis,

but I have a good friend whose daughter has battled it for many years. The

child is treated at the National Eye Institute, part of the National Institutes

of Health. Steroid injections directly into the eye have been part of the

treatment. I don’t know much about it, but wanted to at least let you

know that your doc is not alone in doing those.

Liz

Prednisone Taper? -

Long

We went to the Rhuemy today and she said Caroline

looks so much

better! Yeah! She doesn't think any new joints

have presented

themselves, but she also said because she is so

heavily medicated it

would be difficult to tell if any new one's were

inflammed. Hmmm.

She still thinks her right knee is not great, but

we are hoping for

good results with the MTX. She increased her MTX

dosage from .5

to .6.

We are having so many problems with the Prednisone

that we are

switching it to one time doasage 1 teaspoon in the

morning. She is

also starting Zantac. She hopes that this

combination will help with

the stomach aches, sleeplessness, the moodiness,

etc. etc. She said

she won't start the Pred taper until we go into

the eye doctor (2

more weeks) and there has been little or no change

or we see an

improvement. That seems like a long time to me. I

told her we wanted

her off the pred asap, but she said she is

hesitant because of

Caroline's bad reaction off the missed dosage this

weekend. Ugh! She

also told us that because of Caroline's sensitive

liver all NSAIDS

are out and that our only other option would

probably be Enbrel.

However, she can't write a prescription for it

until we know the MTX

isn't working, because most insurance's won't

cover it?

Our Rhuemy told us if the knee isn't better in 6-8

weeks, she is

going to recommend us injecting the knee once

again. Our

opthamologist also said if she has another eye

flare that he wants

to put her under and inject steroids directly into

her eyes?! That

scares the crap out of me!!

Anyways... Sorry for rambling. I think we got good

news today, but I

couldn't tell. Hopefully, we can start the taper

soon and we get no

bad reactions!We have to have her labs run again

tomorrow to check

her liver. Oh - She also lost a pound since

being on Pred and MTX,

which is kind of odd. One pound doesn't sound like

a lot, but to a

two year old that is huge!

Ok. I'm done now...

Alia and Caroline, age 2, pauci and uveitis

[Guest guest]

Hi,Alia. It is hard when you want them off the drugs, but with her eye

involvement I think your dr is right to be conservative and keep her on

for now. Make sure her eyes are stable then begin reducing. With

I worry about his eyes. So far, so good. But it can change and that is

why I make sure he goes to every appt every 6 months like he is supposed

to. Nothing to mess around with there. How has Caroline been sleeping

for you? Hopefully changing the time of the dose works for her. Michele

(16,pauci & spondy)

Prednisone Taper? - Long

We went to the Rhuemy today and she said Caroline looks so much

better! Yeah! She doesn't think any new joints have presented

themselves, but she also said because she is so heavily medicated it

would be difficult to tell if any new one's were inflammed. Hmmm.

She still thinks her right knee is not great, but we are hoping for

good results with the MTX. She increased her MTX dosage from .5

to .6.

We are having so many problems with the Prednisone that we are

switching it to one time doasage 1 teaspoon in the morning. She is

also starting Zantac. She hopes that this combination will help with

the stomach aches, sleeplessness, the moodiness, etc. etc. She said

she won't start the Pred taper until we go into the eye doctor (2

more weeks) and there has been little or no change or we see an

improvement. That seems like a long time to me. I told her we wanted

her off the pred asap, but she said she is hesitant because of

Caroline's bad reaction off the missed dosage this weekend. Ugh! She

also told us that because of Caroline's sensitive liver all NSAIDS

are out and that our only other option would probably be Enbrel.

However, she can't write a prescription for it until we know the MTX

isn't working, because most insurance's won't cover it?

Our Rhuemy told us if the knee isn't better in 6-8 weeks, she is

going to recommend us injecting the knee once again. Our

opthamologist also said if she has another eye flare that he wants

to put her under and inject steroids directly into her eyes?! That

scares the crap out of me!!

Anyways... Sorry for rambling. I think we got good news today, but I

couldn't tell. Hopefully, we can start the taper soon and we get no

bad reactions!We have to have her labs run again tomorrow to check

her liver. Oh - She also lost a pound since being on Pred and MTX,

which is kind of odd. One pound doesn't sound like a lot, but to a

two year old that is huge!

Ok. I'm done now...

Alia and Caroline, age 2, pauci and uveitis

[Guest guest]

-Alia..

I think it sounded like a good appt...you have to be thankful that

theres some drugs that seem to be really helping Caroline specially

with her history with the NSAIDS. I know the drugs are no fun and we

would all like our kids to be drug free. Im just happy that Nick is

finally symptom free after nearly a year of this. Right now i dont

care that hes on a bunch of drugs.

Look on the bright side...))) at least Caroline is not a kid who

they cant seem to find the right combo of drugs to help. That would

be really distressing.

so YEAH on the good appt!!!! ))))

Helen, the glass is 1/2 full kinda gal!!!

and (6,systemic)

-- In , " Tepper, Michele " <MTepper@f...>

wrote:

> Hi,Alia. It is hard when you want them off the drugs, but with her

eye

> involvement I think your dr is right to be conservative and keep

her on

> for now. Make sure her eyes are stable then begin reducing. With

> I worry about his eyes. So far, so good. But it can change and that

is

> why I make sure he goes to every appt every 6 months like he is

supposed

> to. Nothing to mess around with there. How has Caroline been

sleeping

> for you? Hopefully changing the time of the dose works for her.

Michele

> (16,pauci & spondy)

>

> Prednisone Taper? - Long

>

>

> We went to the Rhuemy today and she said Caroline looks so much

> better! Yeah! She doesn't think any new joints have presented

> themselves, but she also said because she is so heavily medicated

it

> would be difficult to tell if any new one's were inflammed. Hmmm.

> She still thinks her right knee is not great, but we are hoping for

> good results with the MTX. She increased her MTX dosage from .5

> to .6.

>

> We are having so many problems with the Prednisone that we are

> switching it to one time doasage 1 teaspoon in the morning. She is

> also starting Zantac. She hopes that this combination will help

with

> the stomach aches, sleeplessness, the moodiness, etc. etc. She said

> she won't start the Pred taper until we go into the eye doctor (2

> more weeks) and there has been little or no change or we see an

> improvement. That seems like a long time to me. I told her we

wanted

> her off the pred asap, but she said she is hesitant because of

> Caroline's bad reaction off the missed dosage this weekend. Ugh!

She

> also told us that because of Caroline's sensitive liver all NSAIDS

> are out and that our only other option would probably be Enbrel.

> However, she can't write a prescription for it until we know the

MTX

> isn't working, because most insurance's won't cover it?

>

> Our Rhuemy told us if the knee isn't better in 6-8 weeks, she is

> going to recommend us injecting the knee once again. Our

> opthamologist also said if she has another eye flare that he wants

> to put her under and inject steroids directly into her eyes?! That

> scares the crap out of me!!

>

> Anyways... Sorry for rambling. I think we got good news today, but

I

> couldn't tell. Hopefully, we can start the taper soon and we get no

> bad reactions!We have to have her labs run again tomorrow to check

> her liver. Oh - She also lost a pound since being on Pred and MTX,

> which is kind of odd. One pound doesn't sound like a lot, but to a

> two year old that is huge!

>

> Ok. I'm done now...

>

> Alia and Caroline, age 2, pauci and uveitis

>

>

>

>

>

>

[Guest guest]

Thanks . She was up for two hours again last night. GRRR...

I guess this eye thing is a lot more tricky than I thought. I hope

that switching the dose of Pred works. We started it this morning so

we'll see how she sleeps tonight. I on the other hand am falling

as..le.....

What? See there I go again! LOL!

Alia and caroline, age 2, pauci and uveitis

> Hi,Alia. It is hard when you want them off the drugs, but with her

eye

> involvement I think your dr is right to be conservative and keep

her on

> for now. Make sure her eyes are stable then begin reducing. With

> I worry about his eyes. So far, so good. But it can change and

that is

> why I make sure he goes to every appt every 6 months like he is

supposed

> to. Nothing to mess around with there. How has Caroline been

sleeping

> for you? Hopefully changing the time of the dose works for her.

Michele

> (16,pauci & spondy)

>

> Prednisone Taper? - Long

>

>

> We went to the Rhuemy today and she said Caroline looks so much

> better! Yeah! She doesn't think any new joints have presented

> themselves, but she also said because she is so heavily medicated

it

> would be difficult to tell if any new one's were inflammed. Hmmm.

> She still thinks her right knee is not great, but we are hoping

for

> good results with the MTX. She increased her MTX dosage from .5

> to .6.

>

> We are having so many problems with the Prednisone that we are

> switching it to one time doasage 1 teaspoon in the morning. She is

> also starting Zantac. She hopes that this combination will help

with

> the stomach aches, sleeplessness, the moodiness, etc. etc. She

said

> she won't start the Pred taper until we go into the eye doctor (2

> more weeks) and there has been little or no change or we see an

> improvement. That seems like a long time to me. I told her we

wanted

> her off the pred asap, but she said she is hesitant because of

> Caroline's bad reaction off the missed dosage this weekend. Ugh!

She

> also told us that because of Caroline's sensitive liver all NSAIDS

> are out and that our only other option would probably be Enbrel.

> However, she can't write a prescription for it until we know the

MTX

> isn't working, because most insurance's won't cover it?

>

> Our Rhuemy told us if the knee isn't better in 6-8 weeks, she is

> going to recommend us injecting the knee once again. Our

> opthamologist also said if she has another eye flare that he wants

> to put her under and inject steroids directly into her eyes?! That

> scares the crap out of me!!

>

> Anyways... Sorry for rambling. I think we got good news today, but

I

> couldn't tell. Hopefully, we can start the taper soon and we get

no

> bad reactions!We have to have her labs run again tomorrow to check

> her liver. Oh - She also lost a pound since being on Pred and

MTX,

> which is kind of odd. One pound doesn't sound like a lot, but to a

> two year old that is huge!

>

> Ok. I'm done now...

>

> Alia and Caroline, age 2, pauci and uveitis

>

>

>

>

>

>

[Guest guest]

Thanks Helen. I know that all of you are right. I just worry about

pumping her little body so full of meds. I know in the end it is

best for her though.... Thanks for your encouraging words!

alia and caroline, age 2, pauci and uveitis

> > Hi,Alia. It is hard when you want them off the drugs, but with

her

> eye

> > involvement I think your dr is right to be conservative and keep

> her on

> > for now. Make sure her eyes are stable then begin reducing. With

>

> > I worry about his eyes. So far, so good. But it can change and

that

> is

> > why I make sure he goes to every appt every 6 months like he is

> supposed

> > to. Nothing to mess around with there. How has Caroline been

> sleeping

> > for you? Hopefully changing the time of the dose works for her.

> Michele

> > (16,pauci & spondy)

> >

> > Prednisone Taper? - Long

> >

> >

> > We went to the Rhuemy today and she said Caroline looks so much

> > better! Yeah! She doesn't think any new joints have presented

> > themselves, but she also said because she is so heavily

medicated

> it

> > would be difficult to tell if any new one's were inflammed.

Hmmm.

> > She still thinks her right knee is not great, but we are hoping

for

> > good results with the MTX. She increased her MTX dosage from .5

> > to .6.

> >

> > We are having so many problems with the Prednisone that we are

> > switching it to one time doasage 1 teaspoon in the morning. She

is

> > also starting Zantac. She hopes that this combination will help

> with

> > the stomach aches, sleeplessness, the moodiness, etc. etc. She

said

> > she won't start the Pred taper until we go into the eye doctor

(2

> > more weeks) and there has been little or no change or we see an

> > improvement. That seems like a long time to me. I told her we

> wanted

> > her off the pred asap, but she said she is hesitant because of

> > Caroline's bad reaction off the missed dosage this weekend. Ugh!

> She

> > also told us that because of Caroline's sensitive liver all

NSAIDS

> > are out and that our only other option would probably be Enbrel.

> > However, she can't write a prescription for it until we know the

> MTX

> > isn't working, because most insurance's won't cover it?

> >

> > Our Rhuemy told us if the knee isn't better in 6-8 weeks, she is

> > going to recommend us injecting the knee once again. Our

> > opthamologist also said if she has another eye flare that he

wants

> > to put her under and inject steroids directly into her eyes?!

That

> > scares the crap out of me!!

> >

> > Anyways... Sorry for rambling. I think we got good news today,

but

> I

> > couldn't tell. Hopefully, we can start the taper soon and we get

no

> > bad reactions!We have to have her labs run again tomorrow to

check

> > her liver. Oh - She also lost a pound since being on Pred and

MTX,

> > which is kind of odd. One pound doesn't sound like a lot, but to

a

> > two year old that is huge!

> >

> > Ok. I'm done now...

> >

> > Alia and Caroline, age 2, pauci and uveitis

> >

> >

> >

> >

> >

> >