Kineret or Tocilizumab?

[Guest guest]

Hello all,

It's sooooooo cold here in the UK at the moment! At least, I think it

is! I'm having those dreaded fevers that are being talked about a lot

at the moment so it's hard to tell whether it's the weather or my own

thermostat sometimes!

I have a question.My current Rheumy is putting in an application for

Kineret (Anakinra here in UK.However, I'm seeing another Rheumy for a

second opinion next week who is thinking about Tocilizumab for me. I

could potentially be in a rare position for us in the UK in that I

could be able to choose a rheumy and a treatment. So, does anyone

have an opinion on which would be better to go for? I know drugs work

differently for each one of us so my apologies if this is a bit of a

daft question but I just thought I'd see what you all thought given

that both drugs are relatively new to us in the UK but quite tried

and tested now for you guys over the pond.Any thoughts much

appreciated!

I'm so tired today. i was still awake at 5am this morning. I just

couldn't sleep I was so sore. My fingers were so stiff I struggled to

even get the oramorph out of the bottle. Even pain relief csauses

pain doesn't it!!I know you all know what I mean. I know there's been

a lot of talk about the group this week but I just wanted to say that

even though I don't post very often, the replies I get are always

helpful and heartfelt. Sometimes I do get a little dispondent when I

post and don't get a reply but that's par for the course isn't it. I

know it's hard too because we have such a different system in the UK

and we're behind the times in terms of treatments really (although

things are looking up).

Thank you all for your help. Best wishes to everyone (especially to

those having the 5am pains I had this morning.....ouch!)Take care,

Kate xx

[Guest guest]

kate,

Tocilizumab is not available in the US except by clinical trial at the

moment, so I'm afraid you might not get much info back. I believe there

is someone in the UK who is on this who was having good results. I

hear great things about the trials here.

I am on Kineret now and it's been working for me for several years.

Houston, TX

[Guest guest]

Hi Kate!I'm so glad you're having some success with the rheumatologists now.

I really am happy for you as i know what a struggle it can be here. I really

hope something works for you! If i was to choose between the two, I would

definately choose tocilizumab. For a few reasons - 1. it has worked

amazingly well for me, and with us both being younger patients it might work

particularly well, i know i read before i started it that it was a good one

for younger patients. 2. Anakinra has a lower success rate from what i'm

aware - it worked relatively well with me, which they were surprised about,

but I was told it isn't used much any more. 3. Anakinra you have to self

inject, every day. Tocilizumab is a fortnightly infusion.

Hope this helps, and keep me updated!

Kate (the other one in the north!) x

2008/10/31 a_cone

> kate,

>

> Tocilizumab is not available in the US except by clinical trial at the

> moment, so I'm afraid you might not get much info back. I believe there

> is someone in the UK who is on this who was having good results. I

> hear great things about the trials here.

>

> I am on Kineret now and it's been working for me for several years.

>

>

> Houston, TX

>

>

>

[Guest guest]

Hi Kate!I'm so glad you're having some success with the rheumatologists now.

I really am happy for you as i know what a struggle it can be here. I really

hope something works for you! If i was to choose between the two, I would

definately choose tocilizumab. For a few reasons - 1. it has worked

amazingly well for me, and with us both being younger patients it might work

particularly well, i know i read before i started it that it was a good one

for younger patients. 2. Anakinra has a lower success rate from what i'm

aware - it worked relatively well with me, which they were surprised about,

but I was told it isn't used much any more. 3. Anakinra you have to self

inject, every day. Tocilizumab is a fortnightly infusion.

Hope this helps, and keep me updated!

Kate (the other one in the north!) x

2008/10/31 a_cone

> kate,

>

> Tocilizumab is not available in the US except by clinical trial at the

> moment, so I'm afraid you might not get much info back. I believe there

> is someone in the UK who is on this who was having good results. I

> hear great things about the trials here.

>

> I am on Kineret now and it's been working for me for several years.

>

>

> Houston, TX

>

>

>

[Guest guest]

Kate

 well if I was in your shoes I would be tempted to flip a coin and see what it

tells me. That's about the best I can give you being I have not used either one

of the drugs at all but knowing what I do how they are so different with each of

us I think it would be about as good and if the one did not work as I felt it

should then I would try for the other one. at lest you will have a choose as

that is a real rarity from what I can make out for you folks in both England and

Canada. That is also why I am not a big fan of a government run health care

system here but some thing in the  middle of privet and government. but then I

want champain on my flat bear pay LOL

hugs and best to ya

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

>

> Kate, I wasn't even going to respond to this until I read Martys answer as

> he hit the irtual nail on the head as far as which drugs work for which

> people. This is one area that frustrates the hell out of me, as all of the

> Dr's I have ever come across can't even tell you if this or that druf is he

> answer over 75% of the time. I was on Enbrel for a year and that caused

> severe neurological problems, some that I'm stuck with. I also have two or

> three shoe boxes of meds that I was on and told to stop as they weren't

> doing a damn thing and for some reason they have just become a " gang " of

> sorts living in a kitchen cupboard.

>

I am now on Kineret (Anakineret) and have been for at least 3-4 full

months and to date do not feel even a little bit of difference. In reality

I've been going downhill hard but I can hardly blame a drug for what has

happened to me the past 4 years as summer tranisitioned into HELL! I am of

the mindset that you can flip a coin three times and take the one that comes

up 2x as your answer...it can't be less accurate, that's for sure!

Unlike Marty I won't debate the politics of the health care situation as

I don't like what we have here (when I was healthy & working I paid over

$400.00 per week for my Family plan) and so much of it is pure WASTE due to

Dr's having to protect their asses from all of the snakes out there. I use

the term " snakes " to represent all of the Ambulance Chasers & Lawsuit

specialists out the that are the real nemesis to most of our Countrys'

problems.....hell they write the law, enforce the law, speak in a language

which only " they " truly understand (which ironically is written with a

forked tongue as to leave themselves a back-door out of trouble for

themselves in mnay cases (loopholes) and they also represent us as our

Government. This is probably a universal problem throughout the

industrialized economies of the world.

Well, feeling weird, tired and beat......and really just hope that

whatever you decide helps you out a lot, and allows you to have more & more

of your life back! 'Tis a shame we have to suffer like we do, but if it

doesn't beat us it must be making us stronger in some unkown way, shape or

form.

Best of luck. Go with the RD that seems mnore concerned or spends the

most time with you as that is what you'll need regardless of if the new

med(s) work or not. My RD hasn't come close to solving me as a puzzle, but

he sure as hell impresses me in the way he handles everything. On paper we

shouldn't get along but we do. He is very quiet and I'm a loud SOB....He's a

N.Y. GIANTS fan while I (being blessed by GOD) have been a Cowboy's fan my

entire life.....there are other differences such as him being Jewish and me

Catholic...but I never saw religion as a difference anyway, growing up in a

very " mixed " town and having friends from virtually every major religion in

the US. He said I should join his (I forget the exact name he called it) and

I told him if he can give me " my life " back, I just may do that. It's nice

to have a Dr. you can joke with, talk to, contact when you know he's far too

busy to be bothered knowing you're going to get a phpne call returned as

soon as he can manage to do so!

I hope this " strange " email helps in some way. I just want to point out

that it may not be as simple as what drug you want. If you're fortunate

enough to have two caring & considerate RD's, than thank your God tonight! I

drive 100.2 miles each way to see mine, and I have to try and drive there on

Monday!!!! That's the only downside to this dude in that he is located way

to far from me to drive when I feel like shit, have a headache & double

vision...but I do it anyway as I have no other real choice as our country

rid itself of most forms of mass transportation when the allowed the major

Railroads to fall to shit in the 1950's through early 80's! At least I can

drive straight when hurting, and the wifes' car will get me there in under

an hour so at times it isn't such a bad ride...but when I get " whacked " in

route (happened 2x) everyone gets worried as I have to pull over & lay down

until I can try to drive again. One night I left his office @ 4:30 PM and

didn't pull into my driveway until 2:30 ish.

I'll stop this at this point before I go spewing shit I shouldn't be

spewing.....

Adios, Kirk.

PS...please forgive any & all typo's!!! This email is too long to spellcheck

as I just got that " sick to my stomach " feel " ...

>

>

--

Everything in life sucks except things that should!

[Guest guest]

>

> Kate, I wasn't even going to respond to this until I read Martys answer as

> he hit the irtual nail on the head as far as which drugs work for which

> people. This is one area that frustrates the hell out of me, as all of the

> Dr's I have ever come across can't even tell you if this or that druf is he

> answer over 75% of the time. I was on Enbrel for a year and that caused

> severe neurological problems, some that I'm stuck with. I also have two or

> three shoe boxes of meds that I was on and told to stop as they weren't

> doing a damn thing and for some reason they have just become a " gang " of

> sorts living in a kitchen cupboard.

>

I am now on Kineret (Anakineret) and have been for at least 3-4 full

months and to date do not feel even a little bit of difference. In reality

I've been going downhill hard but I can hardly blame a drug for what has

happened to me the past 4 years as summer tranisitioned into HELL! I am of

the mindset that you can flip a coin three times and take the one that comes

up 2x as your answer...it can't be less accurate, that's for sure!

Unlike Marty I won't debate the politics of the health care situation as

I don't like what we have here (when I was healthy & working I paid over

$400.00 per week for my Family plan) and so much of it is pure WASTE due to

Dr's having to protect their asses from all of the snakes out there. I use

the term " snakes " to represent all of the Ambulance Chasers & Lawsuit

specialists out the that are the real nemesis to most of our Countrys'

problems.....hell they write the law, enforce the law, speak in a language

which only " they " truly understand (which ironically is written with a

forked tongue as to leave themselves a back-door out of trouble for

themselves in mnay cases (loopholes) and they also represent us as our

Government. This is probably a universal problem throughout the

industrialized economies of the world.

Well, feeling weird, tired and beat......and really just hope that

whatever you decide helps you out a lot, and allows you to have more & more

of your life back! 'Tis a shame we have to suffer like we do, but if it

doesn't beat us it must be making us stronger in some unkown way, shape or

form.

Best of luck. Go with the RD that seems mnore concerned or spends the

most time with you as that is what you'll need regardless of if the new

med(s) work or not. My RD hasn't come close to solving me as a puzzle, but

he sure as hell impresses me in the way he handles everything. On paper we

shouldn't get along but we do. He is very quiet and I'm a loud SOB....He's a

N.Y. GIANTS fan while I (being blessed by GOD) have been a Cowboy's fan my

entire life.....there are other differences such as him being Jewish and me

Catholic...but I never saw religion as a difference anyway, growing up in a

very " mixed " town and having friends from virtually every major religion in

the US. He said I should join his (I forget the exact name he called it) and

I told him if he can give me " my life " back, I just may do that. It's nice

to have a Dr. you can joke with, talk to, contact when you know he's far too

busy to be bothered knowing you're going to get a phpne call returned as

soon as he can manage to do so!

I hope this " strange " email helps in some way. I just want to point out

that it may not be as simple as what drug you want. If you're fortunate

enough to have two caring & considerate RD's, than thank your God tonight! I

drive 100.2 miles each way to see mine, and I have to try and drive there on

Monday!!!! That's the only downside to this dude in that he is located way

to far from me to drive when I feel like shit, have a headache & double

vision...but I do it anyway as I have no other real choice as our country

rid itself of most forms of mass transportation when the allowed the major

Railroads to fall to shit in the 1950's through early 80's! At least I can

drive straight when hurting, and the wifes' car will get me there in under

an hour so at times it isn't such a bad ride...but when I get " whacked " in

route (happened 2x) everyone gets worried as I have to pull over & lay down

until I can try to drive again. One night I left his office @ 4:30 PM and

didn't pull into my driveway until 2:30 ish.

I'll stop this at this point before I go spewing shit I shouldn't be

spewing.....

Adios, Kirk.

PS...please forgive any & all typo's!!! This email is too long to spellcheck

as I just got that " sick to my stomach " feel " ...

>

>

--

Everything in life sucks except things that should!

[Guest guest]

>

> Kate, I wasn't even going to respond to this until I read Martys answer as

> he hit the irtual nail on the head as far as which drugs work for which

> people. This is one area that frustrates the hell out of me, as all of the

> Dr's I have ever come across can't even tell you if this or that druf is he

> answer over 75% of the time. I was on Enbrel for a year and that caused

> severe neurological problems, some that I'm stuck with. I also have two or

> three shoe boxes of meds that I was on and told to stop as they weren't

> doing a damn thing and for some reason they have just become a " gang " of

> sorts living in a kitchen cupboard.

>

I am now on Kineret (Anakineret) and have been for at least 3-4 full

months and to date do not feel even a little bit of difference. In reality

I've been going downhill hard but I can hardly blame a drug for what has

happened to me the past 4 years as summer tranisitioned into HELL! I am of

the mindset that you can flip a coin three times and take the one that comes

up 2x as your answer...it can't be less accurate, that's for sure!

Unlike Marty I won't debate the politics of the health care situation as

I don't like what we have here (when I was healthy & working I paid over

$400.00 per week for my Family plan) and so much of it is pure WASTE due to

Dr's having to protect their asses from all of the snakes out there. I use

the term " snakes " to represent all of the Ambulance Chasers & Lawsuit

specialists out the that are the real nemesis to most of our Countrys'

problems.....hell they write the law, enforce the law, speak in a language

which only " they " truly understand (which ironically is written with a

forked tongue as to leave themselves a back-door out of trouble for

themselves in mnay cases (loopholes) and they also represent us as our

Government. This is probably a universal problem throughout the

industrialized economies of the world.

Well, feeling weird, tired and beat......and really just hope that

whatever you decide helps you out a lot, and allows you to have more & more

of your life back! 'Tis a shame we have to suffer like we do, but if it

doesn't beat us it must be making us stronger in some unkown way, shape or

form.

Best of luck. Go with the RD that seems mnore concerned or spends the

most time with you as that is what you'll need regardless of if the new

med(s) work or not. My RD hasn't come close to solving me as a puzzle, but

he sure as hell impresses me in the way he handles everything. On paper we

shouldn't get along but we do. He is very quiet and I'm a loud SOB....He's a

N.Y. GIANTS fan while I (being blessed by GOD) have been a Cowboy's fan my

entire life.....there are other differences such as him being Jewish and me

Catholic...but I never saw religion as a difference anyway, growing up in a

very " mixed " town and having friends from virtually every major religion in

the US. He said I should join his (I forget the exact name he called it) and

I told him if he can give me " my life " back, I just may do that. It's nice

to have a Dr. you can joke with, talk to, contact when you know he's far too

busy to be bothered knowing you're going to get a phpne call returned as

soon as he can manage to do so!

I hope this " strange " email helps in some way. I just want to point out

that it may not be as simple as what drug you want. If you're fortunate

enough to have two caring & considerate RD's, than thank your God tonight! I

drive 100.2 miles each way to see mine, and I have to try and drive there on

Monday!!!! That's the only downside to this dude in that he is located way

to far from me to drive when I feel like shit, have a headache & double

vision...but I do it anyway as I have no other real choice as our country

rid itself of most forms of mass transportation when the allowed the major

Railroads to fall to shit in the 1950's through early 80's! At least I can

drive straight when hurting, and the wifes' car will get me there in under

an hour so at times it isn't such a bad ride...but when I get " whacked " in

route (happened 2x) everyone gets worried as I have to pull over & lay down

until I can try to drive again. One night I left his office @ 4:30 PM and

didn't pull into my driveway until 2:30 ish.

I'll stop this at this point before I go spewing shit I shouldn't be

spewing.....

Adios, Kirk.

PS...please forgive any & all typo's!!! This email is too long to spellcheck

as I just got that " sick to my stomach " feel " ...

>

>

--

Everything in life sucks except things that should!

[Guest guest]

Man I am laughing big time . Her Kirk said he would not debt it and he said more

then I would LOL only problem is he and I agree on way to much so we could never

even debt to  began with ! but i have to hand it to him flip the coin three time

and take the winner of best two out of three . but he is also right about the

one you get along with and that seams more interested in helping you. taking

time to talk and work with you and knowing were your at that is also some thing

that is almost priceless from what I hear. Also as Kirk said he has a shoe box

filled with what did not work I think if we all put every thing we have tried

and that did not work together we could stock as small country's drug store LOL

now do not lose hope over that because there are also many that have also found

help and have gotten wonderful relief from there meds and go one to lead a

normal life what ever that is being I never was called normal so I would not

know what that is

even if it bit me on my south end as I was headed north. so again the best for

you is what works for you and that is found by trying so good luck and some

times Kirk almost sounds like he could be educated even tho he trys to act like

he is not . But I can tell you I got it from a good informant that he is and

that he got all A's in and was an honor student at smart butt street punk school

of hard knocks called the east cost super hard asses! LOL

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

Man I am laughing big time . Her Kirk said he would not debt it and he said more

then I would LOL only problem is he and I agree on way to much so we could never

even debt to  began with ! but i have to hand it to him flip the coin three time

and take the winner of best two out of three . but he is also right about the

one you get along with and that seams more interested in helping you. taking

time to talk and work with you and knowing were your at that is also some thing

that is almost priceless from what I hear. Also as Kirk said he has a shoe box

filled with what did not work I think if we all put every thing we have tried

and that did not work together we could stock as small country's drug store LOL

now do not lose hope over that because there are also many that have also found

help and have gotten wonderful relief from there meds and go one to lead a

normal life what ever that is being I never was called normal so I would not

know what that is

even if it bit me on my south end as I was headed north. so again the best for

you is what works for you and that is found by trying so good luck and some

times Kirk almost sounds like he could be educated even tho he trys to act like

he is not . But I can tell you I got it from a good informant that he is and

that he got all A's in and was an honor student at smart butt street punk school

of hard knocks called the east cost super hard asses! LOL

hugs

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

Kate,

I've tried Enbrel, Remincade and Kineret in the last 7 1/2 years.  Enbrel and

Remicade worked some, but I still didn't feel great.  However in the year or so

that I was on the Kineret, I was able to wean down on my Prednisone to 1 mg (I

would have gotten off for the first time in 8 years if I hadn't gone off the

Kineret to get pregnant) and my labs showed that I was in remission for the

first time in those 8 years as well.  My Rheumy said that studies have showed

that although Kineret is not very effective for RA patients, for some reason

Still's patients have more success with it.  And I definitely did better.  Just

FYI: the shots are daily and painful.  The first 3-4 weeks my skin had a bad

reaction at the injection sites that would swell and itch like crazy, but it

eventually calmed down.  The shots always hurt, but I found it worth the 1

minute of pain in order to feel better during the rest of the day.  Just thought

I'd give you my

experience.  Good luck with your decision and hope that one of the treatments

works well for you.

Carly

[Guest guest]

Kate,

I've tried Enbrel, Remincade and Kineret in the last 7 1/2 years.  Enbrel and

Remicade worked some, but I still didn't feel great.  However in the year or so

that I was on the Kineret, I was able to wean down on my Prednisone to 1 mg (I

would have gotten off for the first time in 8 years if I hadn't gone off the

Kineret to get pregnant) and my labs showed that I was in remission for the

first time in those 8 years as well.  My Rheumy said that studies have showed

that although Kineret is not very effective for RA patients, for some reason

Still's patients have more success with it.  And I definitely did better.  Just

FYI: the shots are daily and painful.  The first 3-4 weeks my skin had a bad

reaction at the injection sites that would swell and itch like crazy, but it

eventually calmed down.  The shots always hurt, but I found it worth the 1

minute of pain in order to feel better during the rest of the day.  Just thought

I'd give you my

experience.  Good luck with your decision and hope that one of the treatments

works well for you.

Carly

[Guest guest]

Kate,

I've tried Enbrel, Remincade and Kineret in the last 7 1/2 years.  Enbrel and

Remicade worked some, but I still didn't feel great.  However in the year or so

that I was on the Kineret, I was able to wean down on my Prednisone to 1 mg (I

would have gotten off for the first time in 8 years if I hadn't gone off the

Kineret to get pregnant) and my labs showed that I was in remission for the

first time in those 8 years as well.  My Rheumy said that studies have showed

that although Kineret is not very effective for RA patients, for some reason

Still's patients have more success with it.  And I definitely did better.  Just

FYI: the shots are daily and painful.  The first 3-4 weeks my skin had a bad

reaction at the injection sites that would swell and itch like crazy, but it

eventually calmed down.  The shots always hurt, but I found it worth the 1

minute of pain in order to feel better during the rest of the day.  Just thought

I'd give you my

experience.  Good luck with your decision and hope that one of the treatments

works well for you.

Carly