RE: To and others on Kineret

[Guest guest]

Darvin-

I had tried all the other drugs and was at the end of my rope when my doctor

brought kineret on board. At the time I was on 15mg of Pred and 25mg?? of

Methotrexate. I noticed results the first day. I was in shock b/c I left

my doctor's office after taking the first shot and thinking well this is

probably going to be another failed drug so I won't get my hopes up. I had

actually forgotten that I took the injection until later that evening when I

realized I wasn't in my normal amount of excrutiating pain. I could

actually use my hands and participate in the evening activities and get

myself ready for bed without help. By the end of the week, the swelling in

my hands and wrists was reduced considerably and I was feeling like a

completely different person. 8 months into I feel almost as good as I did

before I got sick 7 years ago.

It is taken by injection but for the quality of life that I have gotten back

it is worth the small discomfort.

You may have some initial injection site reactions but they tend to go away

over time. Just prep the site with ice beforehand and after if it helps.

Good luck!

carrie thompson

>

>Reply-To: Stillsdisease

>To: <Stillsdisease >

>Subject: To and others on Kineret

>Date: Thu, 23 Jun 2005 13:11:30 -0700

>

> I was recently diagnosed with AOSD. Thus far it's mainly affecting my

>ankle, knee and hip joints and may be working its way up in to my lower

>back. Oddly enough I have had no rash to speak of but have suffered all

>the other symptoms. IE daily repetitive fever, high WBC count, high

>westergren test results and pretty much flu like symptoms. The Pred has

>resolved the fever for the most part but I am still in a great deal of

>discomfort due to the pain.

>

>

>

>My question is how long did it take the Kineret to begin working for you

>after you started taking it?

>

>It appears to be only available by injection?

>

>What if any side effects have you noticed?

>

>

>

>I am wanting to discuss it with my doctor so I'd like to know a bit about

>it

>before going to them.

>

>

>

>Thanks

>

>Darv

>

>

>

>Darvin Atkeson

>

>http://www.liquidmoonlight.com <http://www.liquidmoonlight.com/>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks ,

I guess I actually meant to address to you but somehow picked up on 's

name.

I'll be sure to talk to the doctor about Kineret as thus far I have not been

responding as well as they suggested I should to the Pred.

Thanks for answering back.

Darv

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of carrie turner

Sent: Thursday, June 23, 2005 3:22 PM

To: Stillsdisease

Subject: RE: To and others on Kineret

Darvin-

I had tried all the other drugs and was at the end of my rope when my doctor

brought kineret on board. At the time I was on 15mg of Pred and 25mg?? of

Methotrexate. I noticed results the first day. I was in shock b/c I left

my doctor's office after taking the first shot and thinking well this is

probably going to be another failed drug so I won't get my hopes up. I had

actually forgotten that I took the injection until later that evening when I

realized I wasn't in my normal amount of excrutiating pain. I could

actually use my hands and participate in the evening activities and get

myself ready for bed without help. By the end of the week, the swelling in

my hands and wrists was reduced considerably and I was feeling like a

completely different person. 8 months into I feel almost as good as I did

before I got sick 7 years ago.

It is taken by injection but for the quality of life that I have gotten back

it is worth the small discomfort.

You may have some initial injection site reactions but they tend to go away

over time. Just prep the site with ice beforehand and after if it helps.

Good luck!

carrie thompson

_____

[Guest guest]

Darv,

I'm not on Kineret--I have been looking for an alternative to MTX

and Enbrel and Kineret sounded good. Only big issues I've found are

really bad injection site reactions during the first few weeks of

use, but Allegra can apparently help with this. Since prednisone

isn't working for me, my rheumy wants me to choose either MTX or

enbrel (or a combo) and when I suggested Kineret he shot me down--

said it wasn't effective in AOSD, but that's not what I've been

hearing and reading. I'm going for a second opinion.

> I was recently diagnosed with AOSD. Thus far it's mainly

affecting my

> ankle, knee and hip joints and may be working its way up in to my

lower

> back. Oddly enough I have had no rash to speak of but have

suffered all

> the other symptoms. IE daily repetitive fever, high WBC count,

high

> westergren test results and pretty much flu like symptoms. The

Pred has

> resolved the fever for the most part but I am still in a great

deal of

> discomfort due to the pain.

>

>

>

> My question is how long did it take the Kineret to begin working

for you

> after you started taking it?

>

> It appears to be only available by injection?

>

> What if any side effects have you noticed?

>

>

>

> I am wanting to discuss it with my doctor so I'd like to know a

bit about it

> before going to them.

>

>

>

> Thanks

>

> Darv

>

>

>

> Darvin Atkeson

>

> http://www.liquidmoonlight.com <http://www.liquidmoonlight.com/>

>

>

>

>

>

>

>

>

[Guest guest]

Was anyone given a headcount number when they were diagnosed with AOSD?

I was told by my dr. at the Mayo Clinic that I was #217 in the history of

the world. I believed him, of course, because he knew all about SD. He said I

had a very rare disease. I'm just curious to know if anyone else was

numbered lol!

Tammi

[Guest guest]

Hiya ,

Yes, I guess I accidentally pulled your name from the discussion. Meant to

direct it to . Sorry bout that. I've had a few tough days lately

and my mind is slipping. ;-)

Thus far the Prednisone has only helped me minimally (but then it's only

been two weeks) so Kineret is something I plan to bring up with my

rheumatologist when next we talk if things have not improved by then. I

think many times we are intimidated and maybe even a little awed by doctors.

A good friend who is an RN has told me to be decisive and active in regards

to my own health care and to specifically state what I would like to do and

make sure the doctor understands. From what I can tell in everything I

have read about this disease, doctors know very, very little about what

causes it or how best to treat it and it seems to be pretty rare. Most

doctors should appreciate a patient that takes an active role in their

treatment and comes in somewhat educated about their condition and

treatments. Take print outs from the list if others say it's working for

them. Ask what if any harm there is in trying. Also ask the doctor

(politely of course) where you could find the information that he indicates

that it's not helpful in these cases. Most doctors I have dealt with

provide me with print outs of copies of articles when I ask. The doctor's

opinion is VERY important and not to be disregarded but after all, it's your

health. After my initial appointment I typically go in with a list of

printed questions and discussion topics otherwise I forget. And of course,

a second opinion can't hurt.

At least this is how I plan to approach my healthcare.

Good luck to you with it and please by all means, if you do try it, please

post to the list and let us know how it goes.

Cheers,

Darv

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of

Sent: Thursday, June 23, 2005 6:54 PM

To: Stillsdisease

Subject: Re: To and others on Kineret

Darv,

I'm not on Kineret--I have been looking for an alternative to MTX

and Enbrel and Kineret sounded good. Only big issues I've found are

really bad injection site reactions during the first few weeks of

use, but Allegra can apparently help with this. Since prednisone

isn't working for me, my rheumy wants me to choose either MTX or

enbrel (or a combo) and when I suggested Kineret he shot me down--

said it wasn't effective in AOSD, but that's not what I've been

hearing and reading. I'm going for a second opinion.

> I was recently diagnosed with AOSD. Thus far it's mainly

affecting my

> ankle, knee and hip joints and may be working its way up in to my

lower

> back. Oddly enough I have had no rash to speak of but have

suffered all

> the other symptoms. IE daily repetitive fever, high WBC count,

high

> westergren test results and pretty much flu like symptoms. The

Pred has

> resolved the fever for the most part but I am still in a great

deal of

> discomfort due to the pain.

>

>

>

> My question is how long did it take the Kineret to begin working

for you

> after you started taking it?

>

> It appears to be only available by injection?

>

> What if any side effects have you noticed?

>

>

>

> I am wanting to discuss it with my doctor so I'd like to know a

bit about it

> before going to them.

>

>

>

> Thanks

>

> Darv

>

>

>

> Darvin Atkeson

>

> http://www.liquidmoonlight.com <http://www.liquidmoonlight.com/>

>

>

>

>

>

>

>

>

[Guest guest]

,

I've been doing some searching for Kineret in regards to Still's disease and

found the following that may make your case that Kineret (anakinra) is

helpful with regards to Still's Disease. At least for some people.

Quoting from the page:

Dr. Avril Fitzgerald, from the University of Calgary, presented a poster on

Still's disease at the scientific meeting comparing 4 people treated with

anakinra to two who were treated with an anti-TNF medication. The results:

The four treated with anakinra did significantly better than the two treated

with the anti-TNF, leading her to conclude that IL-1 is an important cause

of the inflammation in Still's disease. Dr. Cush and other rheumatologists

worldwide agree with this conclusion.

It's important to note that this is second hand information from someone who

attended the conference and it states clearly that no research study has yet

been done.

The text comes form this page:

http://64.233.161.104/search?q=cache:tCBUTDyFafwJ:www.arthritisconsumerexper

ts.org/news/2005-january.cfm+kineret+stills

<http://64.233.161.104/search?q=cache:tCBUTDyFafwJ:www.arthritisconsumerexpe

rts.org/news/2005-january.cfm+kineret+stills & hl=en & start=7> & hl=en & start=7

It's a long read but just search for anakinra on the page.

Cheers,

Darv

[Guest guest]

When I was diagnosed 7 years ago, my rheumy gave me some literature that said i

was 315 in the history of the world. The textbook he printed it from started

counting in 1971, and it was probably his from medical school. I'd guess it was

at least 5 years old, so I'm going to hazard to say we're both numbered wrong.

Daycare4Hm@... wrote:Was anyone given a headcount number when they were

diagnosed with AOSD?

I was told by my dr. at the Mayo Clinic that I was #217 in the history of

the world. I believed him, of course, because he knew all about SD. He said I

had a very rare disease. I'm just curious to know if anyone else was

numbered lol!

Tammi

[Guest guest]

I noticed myself feeling better almost immediately, but I was hospitalized at

the time and couldn't move on my own, so being able to get up on my own felt

like a miracle. I think it was the pred and kineret, and I haven't needed to

change anything. it is only injection and I can tell u I used to be deathly

afraid of needles and do it all on my own now. sometimes while at school the

health center will do it for me, but that is it. at first the side effects were

that is hurts until you realize how long to ice the spot first, and I had a

welt/rash on the injection site and itched like crazy and looked gross. I had

those for about two months and now I don't get them anymore, my body is used to

it. I occasionally itch, and the spot band aids all over my body look silly and

weird, but that is it. Good luck. Wish you the best. Any more ? let me know.

Love Always,

________________________________

From: Stillsdisease on behalf of Darvin Atkeson

Sent: Thu 6/23/2005 1:11 PM

To: Stillsdisease

Subject: To and others on Kineret

I was recently diagnosed with AOSD. Thus far it's mainly affecting my

ankle, knee and hip joints and may be working its way up in to my lower

back. Oddly enough I have had no rash to speak of but have suffered all

the other symptoms. IE daily repetitive fever, high WBC count, high

westergren test results and pretty much flu like symptoms. The Pred has

resolved the fever for the most part but I am still in a great deal of

discomfort due to the pain.

My question is how long did it take the Kineret to begin working for you

after you started taking it?

It appears to be only available by injection?

What if any side effects have you noticed?

I am wanting to discuss it with my doctor so I'd like to know a bit about it

before going to them.

Thanks

Darv

Darvin Atkeson

http://www.liquidmoonlight.com <http://www.liquidmoonlight.com/>

[Guest guest]

Darv,

Thanks for the link!

I'm doing research too and will post into on what I find. I haven't

been able to access the heavy duty rheumatology journals online but am

pretty sure I can access them through our school's database

subscription services and will give that a try.

I suppose I'm in that early stage of " denial and groping for a

miracle " but I'm going to go with it... LOL.