Re: kineret wishes and caviar dreams

[Guest guest]

Hello,

My reaction to Kineret was nothing short of miraculous when I began. I've

been on it for almost 3 years now. As far as flairs go, I'm just coming off of

one that began when I ate some bad food. It was one of the worse flairs I've

had since my onset 10 years ago, but it cleared up with doubling my

prednisone rather quickly - just didn't want to do that predisone thing - grrrr,

now

to lower it again.

On the Kineret, it says to stop if you get an infection. While in my flair,

my temps of course sky-rocketed so I stopped the Kineret for almost 10 days,

figuring that with temps that high something must be going on that would

interfere with the Kineret. I had an interesting side effect. And this is the

2nd

time it's happened. My blood pressure had always been low my whole life

until recently and it's practically off of the charts now. Plus, my feet

generally look like big balloons with little tiny toes sticking out. That's

always

especially odd because I used to have the skinniest feet and now I can barely

get my shoes on most days. Well, this is the second time I've noticed than

when off of Kineret, my swelling disappears. The first time this happened,

someone suggested it was because I was off my feet more with my feet up but I

have

a feeling its the Kineret. It happened again this past month when off of

Kineret again. I began taking it again and the feet swelled up again. So now I'm

doing an experiment. I stopped the Kineret last night and I'll see what

happens. My feet seem smaller already, but that may be my imagination. I'll

give

you progress tomorrow. I'm calling my doctor after New Years if this seems to

be the case.

Well Dr. Carole (mit mine own medical experiments) has to go now. Be well

everybody.

Carole from Hollywood FL

[Guest guest]

Muffy,

Greetings from Wisconsin.. You ask about the Kineret and Flares. I started

Kineret about 5 months ago. I must admit I'm feeling alot better and getting my

old " self " back to some degree. As far as Flares, Well My voice plays tricks and

sometimes I'll start to shake alittle but only for a moment or two. I do have

the MTX weekly, and 4 mg of prednisone daily for Kineret support if that makes

sense...My goal is to get off the pred and Mtx. Otherwise there was alot of

problems before the kineret, also if I forget to take my shot for the day I

start to have some problems (as in 5-6 hours late).

I hope this is good news for you ,

Alan..

kineret wishes and caviar dreams

hey kids --

i hope everyone had a painfree christmas -- healthwise, mine was pretty

fabulous.

so, with the generous help and support of many on this list, i have figured

out the whole kineret injection thing and have it down to a science. the ice

beforehand is key! at any rate, it has been just over a month and although i

hate to jinx it by saying anything aloud, it seems to be working. i haven't

felt this well in four years. so, my question is this: for those of you on

kineret, do you still get flares? if so, how often? and are they as intense

as before you started the shots?

thanks for everything. this list has made my life so much better than it was

before; i no longer feel alone.

with affection --

muffy

[Guest guest]

Hi Muffy. I've been on Kineret 3 mos. now and I had the exact same reactions as

you at the injection sites. After a month, all of that went away and I don't

have to ice or anything. I love the kineret also! I was diagnosed with Stills

in 2003 and I have never felt as good as I do now on the Kineret. I am totally

off the MTX and Pred. I've been lucky and haven't had any flares while on it.

I work a full time job and do get tired once in awhile, so I rest. I know my

limits. Hang in there; I'm glad you've found something that works for you. I'm

gald you 've found this wonderful family of Stilligan's. They have helped me

tremendously. Happy New Year to everyone!

Hugs,

Diane

Dallas, TX

[Guest guest]

Hi Muffy,

I've been on Kineret for about two years now and while I stay in a

constant state of " flare " (never been 100% since I first got sick in

1999), I feel many, many, many times better than I did in the

beginning. I get a bit stronger each day. I think I am one of those

cases that will never go into complete remission, but the Kineret and

arava (and now plaquenil) have definitely made life much more bearable.

An example...prior to Christmas I had a heavy work schedule

culminating in 14 straight days at no less than 13 hours a day - 17

the last few days. Several years ago I would have never gotten

through it. Two years ago, I would have started making mistakes about

a week into the project and collapsed before the end. Last year I

would have made it through but I would have been in severe pain and

utter exhaustion.

This year...I made it through with just some exhaustion. I had

absolutely no pain whatsoever. None - which is completely shocking to

me as pain in my legs used to be a number one indicator for me. My

brain worked through the whole process and my body didn't break down.

Now, I took care that I had 10 days off after that and I did a lot of

sleeping during that time. But still, to have made it through without

having to call a doctor crying is a major milestone for me.

So have hope, give it time and believe that little strides actually

make a big difference in the long run.

Houston

[Guest guest]

Carole,

It's not your imagination about the swelling with the Kineret - I have

it too. My hands and feet are huge (i am up a size and a half in shoe

due to it) and it's the worst in the mornings if I take my Kineret in

the evenings. On the nights i forget, no swelling in the mornings. I

am trying to switch my shots to mornings to see if I have a better

reaction, but it just fits my routine better before bed.

Houston

[Guest guest]

:

I'm glad that you are doing all right with kineret. Congratulations!!!!!!

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