Re: Remicade and nightmares?

[Guest guest]

Hello again,

I was wondering who on the listserv has a child that takes remicade infusions

and if any of them started having horrible nightmares shortly after starting

infusions?

Thanks!

lisa and Lexi

----------

Sent via AOL Mobile Email on Cricket

- Re: New to this group...

,

You are correct in your assessment of prednisone. It is not the best for long

term usage. It also seems to be causing more side effects than is good either.

It seems like, to me, that she needs a biologic like enbrel. If she is taking

naproxen and MTX, the next step is the TNF-blockers/biologics.

Okay, Ped. rheum. is totally different than adult rheum. If your doc. isn't

board certified in peds, then change. The practice in ped rheum is to " put the

fire out " meaning, hit the arthritis hard with meds, then back off slowly. This

is to prevent joint damage and increase quality of life. Adult onset, they'll

let you hurt a while, while figuring out what you have. You don't want a kid to

wait around , while their growing joints are being damaged.

Our ped rheumy started enbrel within 3 - 4 months. This was a miracle and

lifesaver at our house. is has had this for 11 months. She needs more.

Audra

14, poly 07

Peyton 12, poly 08

>

> Hi All! My name is and my 5 year old daughter, is, was diagnosed

with juvenile arthritis in May of last year. In March of '10 she broke her

collar bone while wrestling with her twin brother. Within a few days we noticed

that she could no longer straighten her left wrist or bend it back to make a

" stop " hand signal. After a myriad of tests, medications, and possible

diagnoses, the doctors settled on juvenile arthritis. When we intially saw the

rheumatologist at the end of May he said it was psoriatic arthritis, but her

skin remains perfect. We started with just naproxen, but on the first visit with

the rheumy he said that was not enough to calm the inflammation quickly so we

started a long course of prednisone and continued the naproxen. The prednisone

worked great, getting her within 10 degrees of her " normal. " At the end of

August we weaned off the prednisone and within 3 weeks she had lost nearly all

of her range of motion again. Back to the rheumy and he had us start MTX,

restart the prednisone, and continue the naproxen. In a short amount of time she

had her range of motion back and we were working with the OT on muscle

strengthening instead of increasing ROM. We weaned off the prednisone just after

the New Year and lo and behold, lost range of motion again. We saw her rhuemy

again about 2 weeks ago and he increased her MTX, continue current dose of

naproxen, and back on prednisone AGAIN! Each time she's gone back on the

prednisone, the side effects have been even worse than the time before. Now she

literally " bounces off the walls " and she's not regained any ROM yet either.

I've tried giving her coffee, but it just isn't working this time on prednisone.

Since the end of May she has also worn a specially made splint at night time to

keep her hand and wrist in a neutral position.

> I work as a Registered Nurse and have seen alot, but this is really getting to

be too much. I feel like we're chasing our tales and that our current " plan "

keeps putting us back to square one. There has to be something better out there.

My questions are this - should we pursue a second opinion? I know rheumy's are

in short supply from reading the AF's book about children with arthritis, but

I'm really starting to wonder. I'm so thankful we live in an area of the country

where there are 4 rheumy's within a reasonable driving distance (1-3 hours of

driving depending on which direction we go). Also, does anyone have any ideas to

help with the hyperactivity from the prednisone? Like I said, we've tried

coffee, and I really don't want to add another medication like ritalin, but I'm

afraid we're at that point as well. I'm wondering about the prednisone - I know

there are severe side effects and various complications from long term

prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become

" just a wrist " and we no longer risk her life for it?

> Some of these questions are just me thinking out loud, but any ideas would be

greatly appreciated!

>

[Guest guest]

hello--My son is on Remicade. The first four infusions he had

rerrible nightmares. They lasted 4-7 nights. He did not want to go to sleep in

the evening , nor go back for the infusion. They have stoppped after the fifth

infusion. He just had his 6th infusion and on the highest alloted dose . He has

no more nightmares. I mentioned it to his rheumy. she said it is an uncommon

side effect.

> >

> > Hi All! My name is and my 5 year old daughter, is, was diagnosed

with juvenile arthritis in May of last year. In March of '10 she broke her

collar bone while wrestling with her twin brother. Within a few days we noticed

that she could no longer straighten her left wrist or bend it back to make a

" stop " hand signal. After a myriad of tests, medications, and possible

diagnoses, the doctors settled on juvenile arthritis. When we intially saw the

rheumatologist at the end of May he said it was psoriatic arthritis, but her

skin remains perfect. We started with just naproxen, but on the first visit with

the rheumy he said that was not enough to calm the inflammation quickly so we

started a long course of prednisone and continued the naproxen. The prednisone

worked great, getting her within 10 degrees of her " normal. " At the end of

August we weaned off the prednisone and within 3 weeks she had lost nearly all

of her range of motion again. Back to the rheumy and he had us start MTX,

restart the prednisone, and continue the naproxen. In a short amount of time she

had her range of motion back and we were working with the OT on muscle

strengthening instead of increasing ROM. We weaned off the prednisone just after

the New Year and lo and behold, lost range of motion again. We saw her rhuemy

again about 2 weeks ago and he increased her MTX, continue current dose of

naproxen, and back on prednisone AGAIN! Each time she's gone back on the

prednisone, the side effects have been even worse than the time before. Now she

literally " bounces off the walls " and she's not regained any ROM yet either.

I've tried giving her coffee, but it just isn't working this time on prednisone.

Since the end of May she has also worn a specially made splint at night time to

keep her hand and wrist in a neutral position.

> > I work as a Registered Nurse and have seen alot, but this is really getting

to be too much. I feel like we're chasing our tales and that our current " plan "

keeps putting us back to square one. There has to be something better out there.

My questions are this - should we pursue a second opinion? I know rheumy's are

in short supply from reading the AF's book about children with arthritis, but

I'm really starting to wonder. I'm so thankful we live in an area of the country

where there are 4 rheumy's within a reasonable driving distance (1-3 hours of

driving depending on which direction we go). Also, does anyone have any ideas to

help with the hyperactivity from the prednisone? Like I said, we've tried

coffee, and I really don't want to add another medication like ritalin, but I'm

afraid we're at that point as well. I'm wondering about the prednisone - I know

there are severe side effects and various complications from long term

prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become

" just a wrist " and we no longer risk her life for it?

> > Some of these questions are just me thinking out loud, but any ideas would

be greatly appreciated!

> >

>

[Guest guest]

Hi Carol

Thanks for your response. I think I will mention it to Lexi's Dr. but I don't

know what I can do to help her not be scared to go to sleep at night now...she

says they are very vivid horrible nightmares about people being murdered!

Yikes! I'd be scared too!

Re: Remicade and nightmares?

hello--My son is on Remicade. The first four infusions he had

rerrible nightmares. They lasted 4-7 nights. He did not want to go to sleep in

the evening , nor go back for the infusion. They have stoppped after the fifth

infusion. He just had his 6th infusion and on the highest alloted dose . He has

no more nightmares. I mentioned it to his rheumy. she said it is an uncommon

side effect.

> >

> > Hi All! My name is and my 5 year old daughter, is, was diagnosed

with juvenile arthritis in May of last year. In March of '10 she broke her

collar bone while wrestling with her twin brother. Within a few days we noticed

that she could no longer straighten her left wrist or bend it back to make a

" stop " hand signal. After a myriad of tests, medications, and possible

diagnoses, the doctors settled on juvenile arthritis. When we intially saw the

rheumatologist at the end of May he said it was psoriatic arthritis, but her

skin remains perfect. We started with just naproxen, but on the first visit with

the rheumy he said that was not enough to calm the inflammation quickly so we

started a long course of prednisone and continued the naproxen. The prednisone

worked great, getting her within 10 degrees of her " normal. " At the end of

August we weaned off the prednisone and within 3 weeks she had lost nearly all

of her range of motion again. Bac k to the rheumy and he had us start MTX,

restart the prednisone, and continue the naproxen. In a short amount of time she

had her range of motion back and we were working with the OT on muscle

strengthening instead of increasing ROM. We weaned off the prednisone just after

the New Year and lo and behold, lost range of motion again. We saw her rhuemy

again about 2 weeks ago and he increased her MTX, continue current dose of

naproxen, and back on prednisone AGAIN! Each time she's gone back on the

prednisone, the side effects have been even worse than the time before. Now she

literally " bounces off the walls " and she's not regained any ROM yet either.

I've tried giving her coffee, but it just isn't working this time on prednisone.

Since the end of May she has also worn a specially made splint at night time to

keep her hand and wrist in a neutral position.

> > I work as a Registered Nurse and have seen alot, but this is really getting

to be too much. I feel like we're chasing our tales and that our current " plan "

keeps putting us back to square one. There has to be something better out there.

My questions are this - should we pursue a second opinion? I know rheumy's are

in short supply from reading the AF's book about children with arthritis, but

I'm really starting to wonder. I'm so thankful we live in an area of the country

where there are 4 rheumy's within a reasonable driving distance (1-3 hours of

driving depending on which direction we go). Also, does anyone have any ideas to

help with the hyperactivity from the prednisone? Like I said, we've tried

coffee, and I really don't want to add another medication like ritalin, but I'm

afraid we're at that point as well. I'm wondering about the prednisone - I know

there are severe side effects and various complications from long term

prednisone (osteoporosis, diabe tes, heart failure, etc), so when does it become

" just a wrist " and we no longer risk her life for it?

> > Some of these questions are just me thinking out loud, but any ideas would

be greatly appreciated!

> >

>

[Guest guest]

My 9 year old daughter has been having Remicade infusions since last August,

but luckily has not had nightmares. Good luck to you and your daughter,

it's so hard to find the right thing that works and doesn't cause other

problems!

Lori in MA

On Sun, Feb 6, 2011 at 9:34 PM, <redfeather03@...> wrote:

>

>

>

> Hi Carol

> Thanks for your response. I think I will mention it to Lexi's Dr. but I

> don't know what I can do to help her not be scared to go to sleep at night

> now...she says they are very vivid horrible nightmares about people being

> murdered! Yikes! I'd be scared too!

>

>

>

> Re: Remicade and nightmares?

>

> hello--My son is on Remicade. The first four infusions he had

> rerrible nightmares. They lasted 4-7 nights. He did not want to go to sleep

> in the evening , nor go back for the infusion. They have stoppped after the

> fifth infusion. He just had his 6th infusion and on the highest alloted dose

> . He has no more nightmares. I mentioned it to his rheumy. she said it is an

> uncommon side effect.

>

> > >

> > > Hi All! My name is and my 5 year old daughter, is, was

> diagnosed with juvenile arthritis in May of last year. In March of '10 she

> broke her collar bone while wrestling with her twin brother. Within a few

> days we noticed that she could no longer straighten her left wrist or bend

> it back to make a " stop " hand signal. After a myriad of tests, medications,

> and possible diagnoses, the doctors settled on juvenile arthritis. When we

> intially saw the rheumatologist at the end of May he said it was psoriatic

> arthritis, but her skin remains perfect. We started with just naproxen, but

> on the first visit with the rheumy he said that was not enough to calm the

> inflammation quickly so we started a long course of prednisone and continued

> the naproxen. The prednisone worked great, getting her within 10 degrees of

> her " normal. " At the end of August we weaned off the prednisone and within 3

> weeks she had lost nearly all of her range of motion again. Bac k to the

> rheumy and he had us start MTX, restart the prednisone, and continue the

> naproxen. In a short amount of time she had her range of motion back and we

> were working with the OT on muscle strengthening instead of increasing ROM.

> We weaned off the prednisone just after the New Year and lo and behold, lost

> range of motion again. We saw her rhuemy again about 2 weeks ago and he

> increased her MTX, continue current dose of naproxen, and back on prednisone

> AGAIN! Each time she's gone back on the prednisone, the side effects have

> been even worse than the time before. Now she literally " bounces off the

> walls " and she's not regained any ROM yet either. I've tried giving her

> coffee, but it just isn't working this time on prednisone. Since the end of

> May she has also worn a specially made splint at night time to keep her hand

> and wrist in a neutral position.

> > > I work as a Registered Nurse and have seen alot, but this is really

> getting to be too much. I feel like we're chasing our tales and that our

> current " plan " keeps putting us back to square one. There has to be

> something better out there. My questions are this - should we pursue a

> second opinion? I know rheumy's are in short supply from reading the AF's

> book about children with arthritis, but I'm really starting to wonder. I'm

> so thankful we live in an area of the country where there are 4 rheumy's

> within a reasonable driving distance (1-3 hours of driving depending on

> which direction we go). Also, does anyone have any ideas to help with the

> hyperactivity from the prednisone? Like I said, we've tried coffee, and I

> really don't want to add another medication like ritalin, but I'm afraid

> we're at that point as well. I'm wondering about the prednisone - I know

> there are severe side effects and various complications from long term

> prednisone (osteoporosis, diabe tes, heart failure, etc), so when does it

> become " just a wrist " and we no longer risk her life for it?

>

> > > Some of these questions are just me thinking out loud, but any ideas

> would be greatly appreciated!

> > >

> >

>

>