Re: For Sophie Kineret update

[Guest guest]

I really do not like the sounds of thalidomide!!! 's doctor

mentioned it briefly before we started kineret but quickly dismissed

it. I don't think he has had any patients on it, and I don't I want

to be the first. There isn't a lot of data on Orencia and

systemic jra, and over the years I have read some scary posts about

allergic reactions to remicade. I am not sure what we should do

next. I am just going to have to trust her doctor to suggest the

best option. She may actually be his first patient on Orencia but I

read the study results and it sounds like there were no serious

related adverse effects and only one allergic reaction.

When Caitlin was on daily oral prednisone, what was her dose?

's doctor went over a long list of the long term side effects

of using prednisone, and I think he just wanted to emphasize that we

need to get her off as soon as possible. I just don't know how we

are going to do that right now and still send her to school. She is

doing well on the 5 mgs a day, but even with that she has some

swelling in her ankles and her right wrist has almost no movement up

or down.

I finally went to the doctor and got help for my anxiety. This flare

up at the beginning of school really put me in a pattern of worry

that I wasn't able to get myself out of. I feel much better now.

Even though I am still worried, I can at least concentrate at work

and take care of all three of my kids like I need to.

I am really happy for Caitlin and your family. You all deserve a

break from the worry! I am praying it is a permanent break!

Take care, and as always, thanks for the info.

Sophie

> >

> > From: slevindoski <slevindoski@ ...>

> > Subject: Kineret update

> > @group s.com

> > Date: Thursday, October 9, 2008, 10:34 AM

> >

> >

> >

> >

> >

> >

> > Hi Everyone,

> > I haven't posted in a while, so I wanted to post an update on

>

> > and kineret. We had thought in the beginning that kineret was

going

> > to work well for her. As soon as school started, though, her

> > arthritis flared. She hasn't had rashes or fevers, but her joints

> > are a mess. For the first time ever, we have had to put her on

> daily

> > oral prednisone. We managed to wean down to 5 mgs a day, but she

is

> > having a lot of stiffness and swelling on 5 mgs.

> >

> > She has used Enbrel, Humira in the past, and I am wondering what

is

> > next. I am thinking probably remicade or orencia. Does anyone

have

> > kids on either remicade or orencia, and what has been your

child's

> > experience with it? Her next appt is Oct 23, so I am trying to

read

> > up on our other options. I have read about thalidomide, but am

> > concerned about the neuropathy reported. Does anyone have kids on

> it?

> >

> > Thanks so much for all your posts. I don't post often, but I do

> read

> > daily!

> >

> > Sophie

> > 's mom, systemic jra, age 8

> >

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> >

> >

> >

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[Guest guest]

Hi Sophie-

 

I don't blame you on the thalidomide.  I generally try not to steer people away

from the drug choices they may have to make... but that was a tough one to try. 

A sort of a hail mary pass on our part.

 

As far as the pred is concerned... Caitlin generally was on a pulse.  So she

would have a very high dose (24 mg/3 times day) for five days and then  off for

21 days.  When she was really flaring badly, we would shorten the time in

between pulses... and sometimes end up on a daily dose.  The last time she was

on a daily - it got as high as 15mg.  It wasn't long before the puffy cheeks and

insomnia set in.  All the pred certainly took it's toll.... she will definitely

need hip replacement on both sides - between the avascular necrosis from the

pred and the degeneration from the arthritis.  But I believe that she may well

have ended up in the same place, but with further damage in other joints had we

not been as aggressive, and resorted the pred when we did.  I hate the drug -

but I am so grateful for it as well - for all the times in enabled her to walk,

to stand, to not be in so much pain.

 

I can relate to the anxiety as well - and am so glad you got help for it.  I had

real problems with panic attacks and general anxiety last year and the year

before.  I delayed getting help - I guess out of fear I would be admitting some

sort of weakness.  When I finally made an appointment with a psych - she didn't

show up and I left the office in hysterics.  It was another five months before I

finally sought help again.  By then, it was pretty bad. I had some doozy attacks

that had me sitting with my fingers on the phone, ready to dial 911 - sure I was

having a heart attack.  When I finally admitted this to my mom, she gave me a

Xanax and told me I should never have to go through that again.  I've done lots

of things since to get things under control.... but I will never forget how

afraid I was... or how relieved to know there was always help.  I'm so happy

that things are steady for you there.... because the burden you have with

's

health is enough!

 

By the way - Caitlin did have allergic reactions to Remicade.  Benadryl

generally took care of it - we stuck that one out for six months.  I know it has

really worked wonders for some....

 

Anyway - I wish MRA (tocilizumab) was more readily available.  It's so

frustrating when the remaining choices don't have a lot to offer in terms of

success stories...

 

So good to hear from you again!  I think of you often....

Colleen

From: slevindoski <slevindoski@...>

Subject: Re: For Sophie Kineret update

Date: Monday, October 13, 2008, 5:38 PM

I really do not like the sounds of thalidomide! !! 's doctor

mentioned it briefly before we started kineret but quickly dismissed

it. I don't think he has had any patients on it, and I don't I want

to be the first. There isn't a lot of data on Orencia and

systemic jra, and over the years I have read some scary posts about

allergic reactions to remicade. I am not sure what we should do

next. I am just going to have to trust her doctor to suggest the

best option. She may actually be his first patient on Orencia but I

read the study results and it sounds like there were no serious

related adverse effects and only one allergic reaction.

When Caitlin was on daily oral prednisone, what was her dose?

's doctor went over a long list of the long term side effects

of using prednisone, and I think he just wanted to emphasize that we

need to get her off as soon as possible. I just don't know how we

are going to do that right now and still send her to school. She is

doing well on the 5 mgs a day, but even with that she has some

swelling in her ankles and her right wrist has almost no movement up

or down.

I finally went to the doctor and got help for my anxiety. This flare

up at the beginning of school really put me in a pattern of worry

that I wasn't able to get myself out of. I feel much better now.

Even though I am still worried, I can at least concentrate at work

and take care of all three of my kids like I need to.

I am really happy for Caitlin and your family. You all deserve a

break from the worry! I am praying it is a permanent break!

Take care, and as always, thanks for the info.

Sophie

> >

> > From: slevindoski <slevindoski@ ...>

> > Subject: Kineret update

> > @group s.com

> > Date: Thursday, October 9, 2008, 10:34 AM

> >

> >

> >

> >

> >

> >

> > Hi Everyone,

> > I haven't posted in a while, so I wanted to post an update on

>

> > and kineret. We had thought in the beginning that kineret was

going

> > to work well for her. As soon as school started, though, her

> > arthritis flared. She hasn't had rashes or fevers, but her joints

> > are a mess. For the first time ever, we have had to put her on

> daily

> > oral prednisone. We managed to wean down to 5 mgs a day, but she

is

> > having a lot of stiffness and swelling on 5 mgs.

> >

> > She has used Enbrel, Humira in the past, and I am wondering what

is

> > next. I am thinking probably remicade or orencia. Does anyone

have

> > kids on either remicade or orencia, and what has been your

child's

> > experience with it? Her next appt is Oct 23, so I am trying to

read

> > up on our other options. I have read about thalidomide, but am

> > concerned about the neuropathy reported. Does anyone have kids on

> it?

> >

> > Thanks so much for all your posts. I don't post often, but I do

> read

> > daily!

> >

> > Sophie

> > 's mom, systemic jra, age 8

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I know what you mean about the prednisone. We have avoided for all

of the 4 years that has been sick (except for a 3 week

stint). All for nothing it seems, b/c 's hip xrays showed

osteopenia. She suffered and didn't take prednisone and she still

has bone loss in her hips. I don't think we can avoid it now and

still send her to school. She has to function, and if that means

prednisone for a while, then I guess that's what we need to do.

I have debated asking about the clinical trial for MRA. I know

nothing about clinical trials, but I see that the MRA trial is

recruiting patients in Livingston, NJ. That is a 3 1/2 hour drive

for us. I worry about getting in the placebo group and

making the sacrifice at work to get her there every two weeks, only

to have fluids infused into her. Besides, I am sure she would go

down hill even more off the kineret. I guess you have to take the

risk that your child gets in the actual drug group and not the

placebo. I can't imagine telling my mother that I have enrolled her

in an investigational study! I would never hear the end of that. I

haven't ruled it out though. I am going to print out the info and

take it to the appt. and if her doctor doesn't come up with anything

promising, I will bring it up.

I can really relate to your story about putting off going to the

doctor for anxiety. It took 4 years of misery for me to take the

leap. We live in a very small town, and I know all the nurses and

the doctor has a child in 's grade. I finally realized that I

have a lot to be anxious about, so there shouldn't be any

embarrassment about that. I finally realized that as a mother, you

have to take good care of yourself before you can take good care of

your kids. That is what finally motivated me to take care of the

problem.

Thanks for everything. I will update you on what we decide to do.

Sophie

> > >

> > > From: slevindoski <slevindoski@ ...>

> > > Subject: Kineret update

> > > @group s.com

> > > Date: Thursday, October 9, 2008, 10:34 AM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi Everyone,

> > > I haven't posted in a while, so I wanted to post an update on

> >

> > > and kineret. We had thought in the beginning that kineret was

> going

> > > to work well for her. As soon as school started, though, her

> > > arthritis flared. She hasn't had rashes or fevers, but her

joints

> > > are a mess. For the first time ever, we have had to put her on

> > daily

> > > oral prednisone. We managed to wean down to 5 mgs a day, but

she

> is

> > > having a lot of stiffness and swelling on 5 mgs.

> > >

> > > She has used Enbrel, Humira in the past, and I am wondering

what

> is

> > > next. I am thinking probably remicade or orencia. Does anyone

> have

> > > kids on either remicade or orencia, and what has been your

> child's

> > > experience with it? Her next appt is Oct 23, so I am trying to

> read

> > > up on our other options. I have read about thalidomide, but am

> > > concerned about the neuropathy reported. Does anyone have kids

on

> > it?

> > >

> > > Thanks so much for all your posts. I don't post often, but I do

> > read

> > > daily!

> > >

> > > Sophie

> > > 's mom, systemic jra, age 8

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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