Re: Macrophage Activation Syndrome | Arthritis Research | Arthritis Today Magazine

[Guest guest]

,

Thank you for sending that link. That article was really difficult to read, it

brings terror to my heart actually.

One thing MAS articles never mention about the patients who get it is: can this

happen whilst being treated with DMARDS or biologics? And can it happen even

when in a medicated remission? I guess the answer would be yes, as long as the

disease is there it can get out of control, right? I think you said that n

was on methotrexate at the time she had MAS, and I remember you saying that her

disease has never been in remission. So, it sounds like it's just in the cards

for 10% of systemics, but you won't know if it's your child until it happens.

On a similar note, you mentioned you keep a folder with articles/info about MAS.

Do you have links for those articles? I want to get my " just in case " folder

made up.

nn (, 9, systemic)

>

> Hi, all-

>

> n's pediatric rheumy sent me this article about MAS. It is a good one,

and I thought the systemic parents would be interested. (n, 21,

systemic and MAS survivor)

>

>

>

http://www.arthritistoday.org/community/your-foundation/macrophage-activation-sy\

ndrome.php

>

>

>

>

[Guest guest]

Thank you since I found out you were right Avery did have MAS. Maybe I'll

understand it. lol

amy - avery 17 systemic

________________________________

From: Price <bc.price@...>

JRA List < >

Sent: Wed, October 13, 2010 1:18:25 PM

Subject: Macrophage Activation Syndrome | Arthritis Research | Arthritis

Today Magazine

Hi, all-

n's pediatric rheumy sent me this article about MAS. It is a good one, and

I thought the systemic parents would be interested. (n, 21, systemic

and MAS survivor)

http://www.arthritistoday.org/community/your-foundation/macrophage-activation-sy\

ndrome.php

[Guest guest]

n was on mtx and enbrel when she got it. Yes, some kids can get it even in

remission. There appears to be no rhyme nor reason to it. And remember, the

thinking is that up to 50% of systemics get MAS, but it shows up more in their

labs than their physical symptoms. Not all MAS patients get deathly ill, but

many do. Time is of the essence. n was diagnosed right away in the ER,

started on medication, but the next day she went into respiratory arrest. It is

nothing to fool with, but don't live in fear. Educate yourself and understand

the symptoms. And always, always, always, make sure all of the docs are

communicating with one another. A pediatrician would have no idea what MAS is.

They probably can't even spell it. (n, 21, systemic)

On Oct 13, 2010, at 2:10 PM, nn wrote:

> ,

> Thank you for sending that link. That article was really difficult to read, it

brings terror to my heart actually.

>

> One thing MAS articles never mention about the patients who get it is: can

this happen whilst being treated with DMARDS or biologics? And can it happen

even when in a medicated remission? I guess the answer would be yes, as long as

the disease is there it can get out of control, right? I think you said that

n was on methotrexate at the time she had MAS, and I remember you saying

that her disease has never been in remission. So, it sounds like it's just in

the cards for 10% of systemics, but you won't know if it's your child until it

happens.

>

> On a similar note, you mentioned you keep a folder with articles/info about

MAS. Do you have links for those articles? I want to get my " just in case "

folder made up.

>

> nn (, 9, systemic)

>

>

> >

> > Hi, all-

> >

> > n's pediatric rheumy sent me this article about MAS. It is a good one,

and I thought the systemic parents would be interested. (n, 21,

systemic and MAS survivor)

> >

> >

> >

http://www.arthritistoday.org/community/your-foundation/macrophage-activation-sy\

ndrome.php

> >

> >

> >

> >