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Medical Forum / Diseases and Disorders / Arthritis / July 2007

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Kineret

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Smokie Darling (Annie) - 23 Jul 2007 06:10 GMT
I've done a search, and there is some info out there, but I'm lazy at
heart (and in body)...  I'd like to ask a couple of questions:

1)  Is anyone currently on Kineret?
2)  Does the hurt ever go away during injection?
3)  When can I expect to see improvement, if it's going to work?
4)  Why the heck (and when) did Expresscripts (through Tri-Care) start
requiring pre-auth on injectibles (they said I should not have been
getting the Enbrel with pre-auth, even though I'd been on it for over
a year)?
5)  Why is Kineret still that expensive, hasn't it been around for an
age?
6)  Can I possibly whimper and whine anymore than I currently do?

Thanks in advance for any help that you can provide.

Smokie Darling (Annie)

PS okay, #6 is just a joke, the answer is a big ole You BETCHA!  I do
it *all* the time (just ask DH).
Kelly - 23 Jul 2007 06:35 GMT
Hi Annie,
Will try to answer some of your questions although I have not taken
kineret - just listened to all the comments and done some research.

1.  I personally don't know anyone on kineret.  The person I can think of
who lasted the longest and seems to me it worked on for a bit was KJ as I
recall. In the research clinic I attend they have had several people on
kineret.  Only 2 people it worked on but one of those people went into
medical remission.  The other lady had some decent results on it. The rest
it did basically nothing by the sounds of it. My rd didn't give me any hope
of it working - bypassed it altogether.  Our provincial pharmaceutical
review committee denied payment for it from the provincial insurance company
saying the efficacy wasn't there especially compared to what else was on the
market (having said that they are frequently wrong!!!!)

2.  I have heard via other people that the hurt does go away with icing,
warming the med to room temperature etc.  I guess my opinon would be if it
worked it would be worth the bit of pain in a day.  If it would work. The
self injector is going to make things hurt more because you can't control
how fast it goes in (according to my np)

3.  The website information says it works in about 12 weeks for most people.
Again as per information from #1 I was told this was about right - could be
longer for some people.

4.  Can't help you with this (I am from Canada and so things are different).

5.  I can help a bit here.  My soapbox. These pharmaceutical companies spend
huge amounts of money developing some of these meds and lots of years.
Since my husband also buys the stocks I can tell you that many of the meds
they have to drop due to problems, too many things in the pipelines etc.
even after spending masses of money.  The stock investors take chances (yup
that would be us) and in a lot of cases they don't pan out.  If a med does
make it the stock investors can make money and do.  That keeps them
investing basically in chances and research.  In the case of kineret there
is a limited market.  They arrived at the same time as enbrel, and remicade
basically and were not as "successful" if you can say that.  Very few on
this newsgroup were on it or had great long term relations with it.  Since
then humira (much more user friendly at once a week), orencia and rituxan
have joined the scene - more choices, smaller field of people to draw from.
It really hasn't been around for an age either.  All of these meds are still
in infancy compared to the cheaper meds such as mtx, sulfazalazine etc.  The
price should still be hitting about the same price range as remicade or
enbrel.  Kineret is a bit newer than the other two.  All these keep the
price high - bet they haven't paid off their development costs on that one
yet.  However as consumers this is a choice some of us need on the market
because as we know not everything works on everyone.  This med works
differently than the tnf receptors - it works on the interleukin 1 receptor
instead of the tnf receptors.  Maybe that targets certain kinds of RA or
inflammatory diseases.  Who knows right now.  Just know we need everything
we can at our disposal sometimes.

6. yup - you could take lessons from some of us "veteran" winers and wimps.
Oh sorry mispell - whiners and whimpers.  Personally I think if you could
post your whines more often, complain more often (you just don't do that
enough) and stamp and holler a few more times we could probably put you into
our exclusive club.  You are just too stoic Annie.

I hope things work for you.  I know it has worked for a few but it is kind
of an inconvenient med (the daily shot) and the efficacy doesn't seem to
have been there. However for the few apparently it has been a miracle.  I
think I have my rd convinced if rituxan doesn't work we should give it a try
on me - if it doesn't work for so many well the odds are there it might work
for me.  The main side effect by the way is the telltale rash at week????.
Everyone seems to get it and it is wicked.  Then it goes away and doesn't
come back.

If any questions google KJ and Kineret.  Seems to me she was one of the
better ones on it and goodness knows she tried everything for a long time.
She is now on Orencia and far as I know doing well.

Whine away - we understand.  Just get better at that whining!  You don't do
it enough.

Gentle hugs,
Kelly

> I've done a search, and there is some info out there, but I'm lazy at
> heart (and in body)...  I'd like to ask a couple of questions:
[quoted text clipped - 16 lines]
> PS okay, #6 is just a joke, the answer is a big ole You BETCHA!  I do
> it *all* the time (just ask DH).
Smokie Darling (Annie) - 24 Jul 2007 01:30 GMT
> Hi Annie,
> Will try to answer some of your questions although I have not taken
> kineret - just listened to all the comments and done some research.
>
> 1.  I personally don't know anyone on kineret.  <snipped for brevity only>

***well, you do now.  Okay, you don't know *me* personally, but you've
been here when I've ranted about my silly PCP, my adoration of my
"new" RD, and several other fun little things.  So, you kinda know me.

> 2.  I have heard via other people that the hurt does go away with icing,
> warming the med to room temperature etc. <snip>

***Odd thing, when hubby injected my left arm, it worked pretty good,
just a slight sting.  Injecting my right arm, hurt like a nasty little
sob.  He injected the same area on both arms.  However, even with
that, it hurts less my numbed thigh (and it wasn't numbed at all).

> 3.  The website information says it works in about 12 weeks for most people.
> Again as per information from #1 I was told this was about right - could be
> longer for some people.

***RD was hoping for some sign in 4 weeks, guess he'll be disappointed
then (so what else is new?).  I swear, he's gonna dump me because he
can't get a handle on this stuff...

> 4.  Can't help you with this (I am from Canada and so things are different).

***It was just so strange to suddenly be told that the medication I'd
been getting should have had a pre-auth 6 months ago.  They've always
paid, never needed one.  Weird things man.  Their policy used to be,
if the doctor says you need it (a specialist), then you get it.  Oh
well <shrugs>  I'll learn the new policy...

The only reason we are trying this...  I'm allergic or receive zero
benefit from:

Remicade
Humira
Enbrel
Rituximab/Rituxan
Arava
MTX
Mesna (used with Cytoxan, which DID work, and well)
Plaquenil
Orencia
Sulpha-Salazine (or something like that - brand name starts with an
"A" I think)
Pretty much, if you name it, I've been on it (haven't tried gold yet,
joys)

So, as I'm running out of options, one of his partners said that since
my RA was not responding to regular treatments, that perhaps it was a
variant that might respond to Kineret.

> 5.  I can help a bit here.  My soapbox. These pharmaceutical companies spend
> huge amounts of money developing some of these meds and lots of years.
> Since my husband also buys the stocks I can tell you that many of the meds
> they have to drop due to problems, too many things in the pipelines etc.
> even after spending masses of money.  <snipped very interesting explanation>

***I sort of knew that, but I was whining (lol).  It just seemed that
all the other drugs I've tried have gone down in cost, but Kineret has
been the same price (apparently) since it's initial release, must not
have alot of use.

> 6. yup - you could take lessons from some of us "veteran" winers and wimps.
> Oh sorry mispell - whiners and whimpers.  Personally I think if you could
> post your whines more often, complain more often (you just don't do that
> enough) and stamp and holler a few more times we could probably put you into
> our exclusive club.  You are just too stoic Annie.

****Stoic?  Moi?  Hee-hee...  Hey, YOU GUYS!!!  I've got her fooled,
huh?  Just teasing.  I don't post often, but when I do, it's nearly
always a whine or a rant (occasionally I offer some insight from
personal experience).  Hee-hee...

> I hope things work for you.  I know it has worked for a few but it is kind
> of an inconvenient med (the daily shot) and the efficacy doesn't seem to
[quoted text clipped - 14 lines]
> Gentle hugs,
> Kelly

Thank you for taking the time to answer my post.  I know I could look
stuff up, but when I'm being b*tchy, I just want the answer, and I
want it quickly (of course).

I'll be bookmarking the link for KJ's diary, thanks for sharing that,
too.

Smokie Darling (Annie)
Adelle - 24 Jul 2007 02:23 GMT
>> Hi Annie,
>> Will try to answer some of your questions although I have not taken
[quoted text clipped - 33 lines]
> if the doctor says you need it (a specialist), then you get it.  Oh
> well <shrugs>  I'll learn the new policy...

Had that happen to me, with an allergy medication I'd been taking for almost
a year. I Chalk it up to the random hitting of a wrong computer key at the
wrong time. I truly believe insurance companies have a randomly occurring
'jump through hoop' program which attached itself to claims without rhyme or
reason.

My Mom used Kineret and got the most relief from it with smallest impact to
her immune system. She was very happy with it. Once she started chemo,
though, they took her off all RA meds except prednisone.

Adelle
Smokie Darling (Annie) - 24 Jul 2007 02:36 GMT
> >> Hi Annie,
> >> Will try to answer some of your questions although I have not taken
[quoted text clipped - 45 lines]
>
> Adelle-

You know, I'm allergic to Prednisone (and cortisone, and
dexamethasone).  Seem to be alright with an injection of something
that sounded like Kenolog?  Something like that.  That seems to be
helping as needed and I don't have to deal with the super crankies
(and DH is EVER so grateful).

SD (Annie)
Donna G. - 25 Jul 2007 06:42 GMT
{{{{{{{{{{{{ Annie }}}}}}}}}}}

Sure hope the kineret does the trick for you and gives you some much
needed relief!!!

Hang in there, lady!!!

Hugs,

Donna
.
.
.
.
1.   ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......

2.    J.K.M.A.
Nann Bell - 29 Jul 2007 18:38 GMT
> ***RD was hoping for some sign in 4 weeks, guess he'll be disappointed
> then (so what else is new?).  I swear, he's gonna dump me because he
> can't get a handle on this stuff...

heehee, just be like me and figure you're a challenge to your RD!  It's
funny, I can almost see the wheels turning in mine's brain as he tries to
figure out what's going on with this malabsorption and just how much we need
to worry about it.  I'm sure they don't want too many patients like us, but I
think the good RDs like a few challenges, at least if they are nice patients.

> ***It was just so strange to suddenly be told that the medication I'd
> been getting should have had a pre-auth 6 months ago.  

That happened to me at one point with Enbrel.  I'm not sure how it worked out
though as they called to schedule delivery the day after I got the letter
about needing authoriztion.  Not sure if they found a mistake in data entry
or if my RDs office read them the riot act.  So I'm not much help there.

> ***I sort of knew that, but I was whining (lol).  It just seemed that
> all the other drugs I've tried have gone down in cost, but Kineret has
> been the same price (apparently) since it's initial release, must not
> have alot of use.

That happened to me when I was on Arava.  In the course of a month it went up
$100, or 40% for a month's supply.  That was when we changing from little to
no prescription insurance and we had to pay for 2 or 3 months out of pocket
before I got on the assistance program.  I know a year or so ago it had gone
up even more, another $150 per month.  Can't tell you how much it all ticked
me off!  I won't go down the road on the drug company rant though - I'm due
at church in a bit and need to be in a decent mood!

Signature

Nann
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Simply the thing I am shall make me live --- William Shakespeare

Smokie Darling (Annie) - 29 Jul 2007 19:24 GMT
> > ***RD was hoping for some sign in 4 weeks, guess he'll be disappointed
> > then (so what else is new?).  I swear, he's gonna dump me because he
[quoted text clipped - 5 lines]
> to worry about it.  I'm sure they don't want too many patients like us, but I
> think the good RDs like a few challenges, at least if they are nice patients.

You know, my RD is a very patient, very wonderful doctor.  He keeps
saying that he will find a treatment that works, that doesn't tear me
up (like the Cytoxan).  I've told him, that is an option for us, as a
stop-gap waiting for something new.  He agrees, but I will never be on
it for more than 6 months at a time (my white count drops to nearly
nothing on it).

He says that every RD has a few challenging patients.  He says that I
am the only one he, his partners, and their 'larger' network of RDs,
has ever seen.  Particularly becoming accustomed to a new treatment,
thus making it not work.

Heck, Enbrel was great, until I had to start stopping (yeah, that's
weird) because of infection.  Efficacy dropped everytime I restarted.
Now it does nothing for the RA except reducing the white count, which
for whatever reason does not reduce the inflammation in the joints
(lol).

Maybe we should think about linking our two RDs together, so they
won't feel like they are the *only* one with the exceptionally strange
patient.

> > ***I sort of knew that, but I was whining (lol).  It just seemed that
> > all the other drugs I've tried have gone down in cost, but Kineret has
[quoted text clipped - 8 lines]
> me off!  I won't go down the road on the drug company rant though - I'm due
> at church in a bit and need to be in a decent mood!

Oddly, when I attend church (on the rare occasion I can actually
manage to get there), I find my mood walking in doesn't matter.  The
peace I feel instantly makes my mood improve.  Now, if it would also
make my symptoms improve, then I'd crawl in.

The priest has told me that I should not hurt myself, just to be at
service.  He looks forward to seeing me, but he says it hurts *him* to
watch me trying to genuflect (lol).  He should feel it from my side
(teasing).  On a good day, it looks bad, on a bad day, I take a
header, even when I'm hanging on to the pew.  Am I not the most
pathetic person (joking)?

Enjoy the service (regardless of denomination) for me, okay?

SD (Annie)
Kelly - 23 Jul 2007 06:41 GMT
Here is KJ's diary of kineret - very hopeful.

http://arthritisinsight.com/community/stories/tina4.html

Kelly

> I've done a search, and there is some info out there, but I'm lazy at
> heart (and in body)...  I'd like to ask a couple of questions:
[quoted text clipped - 16 lines]
> PS okay, #6 is just a joke, the answer is a big ole You BETCHA!  I do
> it *all* the time (just ask DH).

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