Re: some encouragement/perspective needed

January 15, 2011

I think it is possible that she can go into remission on the Kineret. I know it

can be tough, but you need to not take these days for granted. It is a very

sneaky disease.

n had a stressful week this week, ( work, interviews, hard classes, and

senior project in engineering) and she was sore today and had the systemic sore

throat. And she still can get the rash. She is on mtx. Kineret didn't work for

her, ( n, 21, systemic since 1999)

Sent from my iPhone

On Jan 15, 2011, at 9:00 PM, " nn " <rosannwinn@...> wrote:

> Hi all,

> Tonight I forgot to put 's EMLA cream on at our usual time, so that

pushed the time for her kineret shot to 9:30pm - about 45 minutes later than

usual. By the time I gave her the shot I could see the systemic rash right under

the skin, and it was itching a bit, as it used to before we started kineret. I

hate, hate, hate this disease. And, that rash is such a wicked visual reminder

that nothing is " cured " in my daughter by giving her this nightly shot, as well

as the weekly methotrexate, as well as the daily NSAID, as well as the

prednisone! The meds just hold it all under the surface.

>

> We ARE weaning prednisone, which is great. I took your advice and have weaned

down even slower than the Rheumy's recommendation. We are now on our last .25mg

- and the plan is to discontinue to O - ZERO - next Friday. After that we'll

reduce the methotrexate by 0.2ml every 4 weeks and follow closely with labs.

>

> hasn't had any joint pain or fevers, and I have occasionally seen the

systemic rash on other nights when we've been a bit late with the kineret. So, I

don't think it's the weaning of the prednisone, moreso that she just really

needs that kineret right at the scheduled time. It's just so disappointing and

stressful to me that it's all RIGHT under the surface. Her labs have been normal

for 3 months since starting the kineret, and she is doing very well clinically,

so I'm not saying the meds aren't working. I just want to ask: is this " as good

as it gets " ? Being totally dependent on a nightly kineret shot or things come

right back? That's how 's Rheumy has explained it to us - that other

patients she has on kineret do really well, but every time they try to wean it

things come right back. I'm having a little mommy meltdown tonight. I am truly

so thankful for these meds, but also so sad that she needs them so much. I guess

it's just the cards for . I want to focus more on the thankfulness and less

on the dismay, but I came here just to vent a bit to those who would understand

....

>

> nn (, 9, systemic, since Oct 09)

>

January 15, 2011

Oh nn I am so sorry you are having such a night. I forgot to give Avery his

meds this morning, prednisone and nexium. It's so much responsibility to never

forget and be on exactly the right time. I also see the disease right below the

surface and know that it will just come right back. So maybe this is as good as

it gets for now. I don't know why it has to be like this. I do know that it

can continue for a long time. But sometimes it just stops. I really don't

think taking her off the prednisone will make it worse, I honestly think the

Kineret is what is working. I have wondered and asked how do we know if it's

over, if we can take him off the meds and go on with our life. No one knows.

But I know for now this is better than what we had. I hate she has to do the

shot every day. I'm glad Avery's is only once a week. On the kineret he would

have had to have 2 a day. I think it really sucks we have to do this, that our

kids have to endure this. Have a fit, have a bowl of ice cream, some pretzel

m & m's, cry, or do whatever you have to do and make it though tonight. Honestly

it sucks, it's not fair and really it's a bunch of crap. I know that and I hate

it but I remember what life was like 3 months ago. When we thought a wheelchair

would be in our daily life and that was if he was going to live. So as long as

it is just in the background you know we will find a way to live with that.

Hugs, and shoulders to cry on.

Amy

rom: nn <rosannwinn@...>

Sent: Sat, January 15, 2011 11:00:08 PM

Subject: some encouragement/perspective needed

Hi all,

Tonight I forgot to put 's EMLA cream on at our usual time, so that pushed

the time for her kineret shot to 9:30pm - about 45 minutes later than usual. By

the time I gave her the shot I could see the systemic rash right under the skin,

and it was itching a bit, as it used to before we started kineret. I hate,

hate, hate this disease. And, that rash is such a wicked visual reminder that

nothing is " cured " in my daughter by giving her this nightly shot, as well as

the weekly methotrexate, as well as the daily NSAID, as well as the prednisone!

The meds just hold it all under the surface.

We ARE weaning prednisone, which is great. I took your advice and have weaned

down even slower than the Rheumy's recommendation. We are now on our last .25mg

- and the plan is to discontinue to O - ZERO - next Friday. After that we'll

reduce the methotrexate by 0.2ml every 4 weeks and follow closely with labs.

hasn't had any joint pain or fevers, and I have occasionally seen the

systemic rash on other nights when we've been a bit late with the kineret. So,

I don't think it's the weaning of the prednisone, moreso that she just really

needs that kineret right at the scheduled time. It's just so disappointing and

stressful to me that it's all RIGHT under the surface. Her labs have been

normal for 3 months since starting the kineret, and she is doing very well

clinically, so I'm not saying the meds aren't working. I just want to ask: is

this " as good as it gets " ? Being totally dependent on a nightly kineret shot or

things come right back? That's how 's Rheumy has explained it to us - that

other patients she has on kineret do really well, but every time they try to

wean it things come right back. I'm having a little mommy meltdown tonight. I

am truly so thankful for these meds, but also so sad that she needs them so

much. I guess it's just the cards for . I want to focus more on the

thankfulness and less on the dismay, but I came here just to vent a bit to those

who would understand ...

nn (, 9, systemic, since Oct 09)

January 15, 2011

You're right . I need to focus on how well she is doing, and not take

these good days for granted. I feel completely thankless for venting. It could

be so much worse, I do know that, and I am sometimes driven by that fear,

especially of MAS. Sometimes the management of it is just tiring I guess. But

that's when I need to be stronger. Thank you for the perspective.

nn

>

> > Hi all,

> > Tonight I forgot to put 's EMLA cream on at our usual time, so that

pushed the time for her kineret shot to 9:30pm - about 45 minutes later than

usual. By the time I gave her the shot I could see the systemic rash right under

the skin, and it was itching a bit, as it used to before we started kineret. I

hate, hate, hate this disease. And, that rash is such a wicked visual reminder

that nothing is " cured " in my daughter by giving her this nightly shot, as well

as the weekly methotrexate, as well as the daily NSAID, as well as the

prednisone! The meds just hold it all under the surface.

> >

> > We ARE weaning prednisone, which is great. I took your advice and have

weaned down even slower than the Rheumy's recommendation. We are now on our last

..25mg - and the plan is to discontinue to O - ZERO - next Friday. After that

we'll reduce the methotrexate by 0.2ml every 4 weeks and follow closely with

labs.

> >

> > hasn't had any joint pain or fevers, and I have occasionally seen the