Re: New member!!!

[Guest guest]

Hello Audra and welcome to our group. I am glad that you found us but sorry

you had to. Your story is very similar to mine. My Birthday is 9/13/73. I am

33,married and have two children ages 11 and 5. I also was diagnosed with

stills in August 2004. I started with my symptoms around March of 2004 Steroids

were my only hope in the beginning. I tried Enbrel but it did nothing for me.

I now have been taking Remicade treatments and Remicade has done wonders for

me. I do now have a lot more good days than I have had in a long time. My

C-reactive protein level has been high often. I do relate with you when you say

that you are just happy to be here and see your children grow. There was a

time in my life where I thought I would not make it. But I am here to say that

it takes time and good doctors (which sometimes are hard to come by). I

still struggle a lot. But from this group I have learned to never give up. Take

Care....

Carey in New Jersey

[Guest guest]

HI Audra!

Glad you found us. There's no better place for support and to make

new friends. Everyone here is wonderful nice and helpful. We have

created our own little family and I dare to say that several of us -

including myself - would have had some real problems surviving

through dark times without this group. I'm very sorry for the reason

we're all here, but so happy you found us.

I am also 34 and also take Kineret shots. I've been on them for

about a year and a half. I do believe they have made a huge

difference for me. I give them to myself in the stomach, so you

might want to move to that area (just don't put them in stretch

marks or within 2 inches of your belly button). The red welts are

not uncommon site reactions from the injections. I had them at

first but very rarely anymore. You might want to put ice on the

injection spot, that might help the welt not rise as much.

Again, welcome!

Houston

[Guest guest]

In a message dated 9/18/2006 11:44:37 PM Eastern Daylight Time,

tchrtb04@... writes:

A rash develops and it itches for a couple of

days and then it welts up for about a week. I am

running out of room!

Welcome to Stilligan's Island. I knew there were some advantages to being a

chubby girl - I had plenty of room on the big old belly and hips. When I

first began taking Kineret I got huge welts, wondered if I'd run out of room.

It's been over 2 years now and no problems at all. It should stop soon!

feel good everyone - Carole in Hollywood FL

[Guest guest]

Hi, Audra, and welcome to this group of wonderful, understanding people!

My C-Reactive Protein has been as high as 86. I've had this disease for 20

years (I am now 38) but it has only been within the last few years that it's

been under control. That was due mostly to them not being able to diagnose me.

I am on Remicade and MTX, but am thinking the Remicade isn't working. I am

going to talk to my doc about this next visit, see if it's time to try something

else.

Good luck and, once again, welcome!

Gail (KY)

Audra Dowty wrote:

Hello, I am a new member. Not to Still's Disease but

to this group. My name is Audra. My birthday is

09.24.71. I am 34 years old and have two wonderful

children. A daughter who is 10 and a son who is 5. I

was diagnosed with Still's Disease in August of 2004.

I graduated from college with my Bachelor's of Science

in Education on May 8th of 2004 and just thought that

I needed to slow down. It was then that my symptoms

got worse and I was hospitalized four times in three

months and was finally diagnosed with Still's Disease.

I was started on 60 mgs. of Prednisone. I tried

Embrel which did nothing for me. I am still taking

Pred. but I take it as needed. I go from 10mgs to 20

or 30 at the most when I flare up. I take

Methtrexate. I am now on Kineret shots each day. We

are trying to get me off the Prednisone. I have had

numerous Cortisone shots in my knees and wrists. I

have noticed that rainy weather and barometric

pressure really make a difference in my flares or

aches and pains. I have had numerous illnesses such

as pnuemonia, strep and many others that I just wake

up with. Above all I am just happy to be here

watching my children grow up. I joined this group and

was surprised to find how many there were with this

same disease. I try to tell people about it and they

just can't wrap their heads around this.

Is any one else taking the Kineret shots and how have

they worked? Any side effects? I have just taken

these for a month and a half. I am experiencing red

blotches where I have had the shots on my arms and

thighs. A rash develops and it itches for a couple of

days and then it welts up for about a week. I am

running out of room! Not sure if its helping yet or

not. My last labs reveal a C-Reactive Protein level

that is high (41.3). Has anyone else had levels this

high?

Thanks in advance for allowing me this opportunity to

let it out, and for any help that can be given or

explained. -Audra

__________________________________________________

[Guest guest]

Dear Audra

Just wanted to say welcome as a new member. I haven't taken embrel myself

so I can't help there. I think most of us are having difficulty in

explaining our illness to other people we just keep trying.

Anyway just wanted to say hello.

All the best

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Audra Dowty

Sent: 19 September 2006 04:32

To: stillsdisease

Subject: New member!!!

Hello, I am a new member. Not to Still's Disease but

to this group. My name is Audra. My birthday is

09.24.71. I am 34 years old and have two wonderful

children. A daughter who is 10 and a son who is 5. I

was diagnosed with Still's Disease in August of 2004.

I graduated from college with my Bachelor's of Science

in Education on May 8th of 2004 and just thought that

I needed to slow down. It was then that my symptoms

got worse and I was hospitalized four times in three

months and was finally diagnosed with Still's Disease.

I was started on 60 mgs. of Prednisone. I tried

Embrel which did nothing for me. I am still taking

Pred. but I take it as needed. I go from 10mgs to 20

or 30 at the most when I flare up. I take

Methtrexate. I am now on Kineret shots each day. We

are trying to get me off the Prednisone. I have had

numerous Cortisone shots in my knees and wrists. I

have noticed that rainy weather and barometric

pressure really make a difference in my flares or

aches and pains. I have had numerous illnesses such

as pnuemonia, strep and many others that I just wake

up with. Above all I am just happy to be here

watching my children grow up. I joined this group and

was surprised to find how many there were with this

same disease. I try to tell people about it and they

just can't wrap their heads around this.

Is any one else taking the Kineret shots and how have

they worked? Any side effects? I have just taken

these for a month and a half. I am experiencing red

blotches where I have had the shots on my arms and

thighs. A rash develops and it itches for a couple of

days and then it welts up for about a week. I am

running out of room! Not sure if its helping yet or

not. My last labs reveal a C-Reactive Protein level

that is high (41.3). Has anyone else had levels this

high?

Thanks in advance for allowing me this opportunity to

let it out, and for any help that can be given or

explained. -Audra

__________________________________________________

[Guest guest]

Hi Audra,

My Name is & I'm 45 diagnosised March of this year but sick for a couple

years off & on. Sorry Stills had to bring you here but you will find lots

information & great people with allot of knowledge & compassion!

I have gone back & fourth between Enbrel & Kineret. Not sure either works that

well for me but I'm better than 6 months ago! With Kineret I do get the

injection site reactions but they usually go away after a month. Right now I'm

on Enbrel & Methtrexate went off the pred. about a month ago. My bloodwork looks

good right now but I don't feel that way most days. The weather here in Idaho

changed quite quickly & I have been really achy so I do think it plays a part in

how we feel. The side effect that has bothered me the most lately is the

day/night sweats. I thought it would get better after being of pred but not so

far. Now I'm not sure if it's the disease, the meds or hormones maybe all of it

combined but they are terrible!!

I hope you get some relief with the Kineret but it can take 6 to 8 weeks

sometimes.

Welcome to the group!

Take Care,

Chris

Audra Dowty wrote:

Hello, I am a new member. Not to Still's Disease but

to this group. My name is Audra. My birthday is

09.24.71. I am 34 years old and have two wonderful

children. A daughter who is 10 and a son who is 5. I

was diagnosed with Still's Disease in August of 2004.

I graduated from college with my Bachelor's of Science

in Education on May 8th of 2004 and just thought that

I needed to slow down. It was then that my symptoms

got worse and I was hospitalized four times in three

months and was finally diagnosed with Still's Disease.

I was started on 60 mgs. of Prednisone. I tried

Embrel which did nothing for me. I am still taking

Pred. but I take it as needed. I go from 10mgs to 20

or 30 at the most when I flare up. I take

Methtrexate. I am now on Kineret shots each day. We

are trying to get me off the Prednisone. I have had

numerous Cortisone shots in my knees and wrists. I

have noticed that rainy weather and barometric

pressure really make a difference in my flares or

aches and pains. I have had numerous illnesses such

as pnuemonia, strep and many others that I just wake

up with. Above all I am just happy to be here

watching my children grow up. I joined this group and

was surprised to find how many there were with this

same disease. I try to tell people about it and they

just can't wrap their heads around this.

Is any one else taking the Kineret shots and how have

they worked? Any side effects? I have just taken

these for a month and a half. I am experiencing red

blotches where I have had the shots on my arms and

thighs. A rash develops and it itches for a couple of

days and then it welts up for about a week. I am

running out of room! Not sure if its helping yet or

not. My last labs reveal a C-Reactive Protein level

that is high (41.3). Has anyone else had levels this

high?

Thanks in advance for allowing me this opportunity to

let it out, and for any help that can be given or

explained. -Audra

__________________________________________________

[Guest guest]

Hi Chris.

I know I keep harping on about reducing pred. but I am really struggling

however small the amount I try to reduce by I still feel terrible. Would

you mind if I asked you how you reduced your dose and if you had many side

effects? Also my rheumy told me that putting up my methotraxate would make

getting off pred. easier, but it doesn't seem to be helping me.

Hope you are having a pain free day.

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Heavin

Sent: 19 September 2006 20:53

To: Stillsdisease

Subject: Re: New member!!!

Hi Audra,

My Name is & I'm 45 diagnosised March of this year but sick for a

couple years off & on. Sorry Stills had to bring you here but you will find

lots information & great people with allot of knowledge & compassion!

I have gone back & fourth between Enbrel & Kineret. Not sure either works

that well for me but I'm better than 6 months ago! With Kineret I do get the

injection site reactions but they usually go away after a month. Right now

I'm on Enbrel & Methtrexate went off the pred. about a month ago. My

bloodwork looks good right now but I don't feel that way most days. The

weather here in Idaho changed quite quickly & I have been really achy so I

do think it plays a part in how we feel. The side effect that has bothered

me the most lately is the day/night sweats. I thought it would get better

after being of pred but not so far. Now I'm not sure if it's the disease,

the meds or hormones maybe all of it combined but they are terrible!!

I hope you get some relief with the Kineret but it can take 6 to 8 weeks

sometimes.

Welcome to the group!

Take Care,

Chris

Audra Dowty <tchrtb04yahoo (DOT) <mailto:tchrtb04%40yahoo.com> com> wrote:

Hello, I am a new member. Not to Still's Disease but

to this group. My name is Audra. My birthday is

09.24.71. I am 34 years old and have two wonderful

children. A daughter who is 10 and a son who is 5. I

was diagnosed with Still's Disease in August of 2004.

I graduated from college with my Bachelor's of Science

in Education on May 8th of 2004 and just thought that

I needed to slow down. It was then that my symptoms

got worse and I was hospitalized four times in three

months and was finally diagnosed with Still's Disease.

I was started on 60 mgs. of Prednisone. I tried

Embrel which did nothing for me. I am still taking

Pred. but I take it as needed. I go from 10mgs to 20

or 30 at the most when I flare up. I take

Methtrexate. I am now on Kineret shots each day. We

are trying to get me off the Prednisone. I have had

numerous Cortisone shots in my knees and wrists. I

have noticed that rainy weather and barometric

pressure really make a difference in my flares or

aches and pains. I have had numerous illnesses such

as pnuemonia, strep and many others that I just wake

up with. Above all I am just happy to be here

watching my children grow up. I joined this group and

was surprised to find how many there were with this

same disease. I try to tell people about it and they

just can't wrap their heads around this.

Is any one else taking the Kineret shots and how have

they worked? Any side effects? I have just taken

these for a month and a half. I am experiencing red

blotches where I have had the shots on my arms and

thighs. A rash develops and it itches for a couple of

days and then it welts up for about a week. I am

running out of room! Not sure if its helping yet or

not. My last labs reveal a C-Reactive Protein level

that is high (41.3). Has anyone else had levels this

high?

Thanks in advance for allowing me this opportunity to

let it out, and for any help that can be given or

explained. -Audra

__________________________________________________

[Guest guest]

In a message dated 9/20/2006 10:38:50 AM Eastern Daylight Time,

joanuk@... writes:

I know I keep harping on about reducing pred. but I am really struggling

however small the amount I try to reduce by I still feel terrible. Would

you mind if I asked you how you reduced your dose and if you had many side

effects? Also my rheumy told me that putting up my methotraxate would make

getting off pred. easier, but it doesn't seem to be helping me.

I've been on prednisone since my onset in 98 and have tried tapering off

countless times, I once got as low as 1/2 milligram every other day. And I

couldn't get lower than that - isn't that the wierdest? I'm at 10 now and not

doing too well, may have to go up again. But I found the best way was to use

the

tapering schedule on the loop list - it kind of fools your body by going up

and down on the pred from day to day. Some days you'll take one am't and

other days you take a different amount. It works pretty well to ease the pain

associated with tapering. When I have used it - I've felt pretty good until I

reach MY wall, usually about 5mgs to 2 mgs.

Best of luck to you.

feel good everyone - Carole in Hollywood FL