Update on Kineret

July 30, 2002

I've temporarily, and maybe permanently, stopped Kineret. After 8

days of injections I begin to see huge red welts on my legs that

didn't appear to be " normal " injection site reactions. Some of the

areas were purple in color. I increased my hydrocortizone to 2.9%,

took Benedryl capsules and put ice on the areas. They aren't as

swollen, 4 days later, but they are very prominent in color. My local

pharmacist didn't feel they were " normal " injection site reactions.

Kineret feels they may be, but that was only over the phone. Now I'm

waiting on my rheumy to call me back to let me know what to do from

here. I never did get a reaction in my arms, funny thing.

I'll keep you all informed but right now I've stopped the Kineret (3

days now).

Janine,OH

July 30, 2002

I've just been informed by my rheumy that my larger raised bruising

on my legs is " normal " injection site issues. Looks to me like I've

been beat with a belt...not normal. So I'm back to Kineret daily but

in my arms for a while. Supposedly if I can get over the site

reactions the first 4-weeks it gets better and the redness (beating)

stops. If not, then they decide there is a problem and we'll go from

there. I didn't want to stop the Kineret but I like to wear shorts

during the hot 90 degree summers as well as swim. Luckily I'm not in

to short shorts...hehe

Janine,OH

> I've temporarily, and maybe permanently, stopped Kineret. After 8

> days of injections I begin to see huge red welts on my legs that

> didn't appear to be " normal " injection site reactions. Some of the

> areas were purple in color. I increased my hydrocortizone to 2.9%,

> took Benedryl capsules and put ice on the areas. They aren't as

> swollen, 4 days later, but they are very prominent in color. My

local

> pharmacist didn't feel they were " normal " injection site reactions.

> Kineret feels they may be, but that was only over the phone. Now

I'm

> waiting on my rheumy to call me back to let me know what to do from

> here. I never did get a reaction in my arms, funny thing.

>

> I'll keep you all informed but right now I've stopped the Kineret

(3

> days now).

>

> Janine,OH

August 7, 2002

> I've temporarily, and maybe permanently, stopped Kineret. After 8

> days of injections I begin to see huge red welts on my legs that

> didn't appear to be " normal " injection site reactions. Some of the

> areas were purple in color.

Janine--I know nothing about Kineret, but I do give myself Enbrel

injections. Can you give them in your tummy? We had quite a bit of

discussion a while back on injections, and you can give Enbrel in

thigh, arm or tummy. I was using my thigh at first, and, in addition

to the initial reactions of welts, I was giving myself big bruises.

I switched to my tummy and eventually stopped getting the welts, but

I still leave small bruises on my tummy. Fortunately, those are

hidden.

Sandy

[Moderator's Note: The difference between Kineret and Enbrel is that

Kinerat is injected DAILY, whereas Enbrel is injected 2x/week. So I

could see the problems with injecting that often.]

August 8, 2002

In a message dated 08/08/2002 11:07:38 AM Eastern Daylight Time,

sedsall@... writes:

> The difference between Kineret and Enbrel is that

> Kinerat is injected DAILY, whereas Enbrel is injected 2x/week. So I

> could see the problems with injecting that often

Is Kinerat injected sub-cutaneous (under the skin) rather than into the

muscle? If so, you probably can inject almost any where - like insulin -

arm, thigh, belly, bottom, etc. Maybe you can rotate so that you never have

to use the same spot twice in one week - (left arm Monday, right leg Tuesday,

etc.) That might help with bruising.

I always inject enbrel into my arm. I sort of have permanent bruises there

but it doesn't bother me. I always tend to get much more of a reaction in my

leg.

August 8, 2002

Sandy,

I'm new to all of this and I'm not sure how it works, I just saw your email

message and decided to email you concerning Enbrel. My rheumy just prescribed

methotrexate for me after trying Celebrex and Vioxx to no avail. I have been

doing research on treatments for PA and methotrexate sounds awful! I wonder why

my dr. would want to use it instead of Enbrel or Kineret. I am a 34-year-old

mother of four small children - I can't be sick!! The Enbrel information I

received says people have died while using Enbrel. Do you or anyone else have

any ideas what I should do? I'm going to get a second opinion as soon as

possible - is there anything I should do to prepare to talk to another doctor?

Thanks,

Cheryl

[ ] Re: Update on Kineret

> I've temporarily, and maybe permanently, stopped Kineret. After 8

> days of injections I begin to see huge red welts on my legs that

> didn't appear to be " normal " injection site reactions. Some of the

> areas were purple in color.

Janine--I know nothing about Kineret, but I do give myself Enbrel

injections. Can you give them in your tummy? We had quite a bit of

discussion a while back on injections, and you can give Enbrel in

thigh, arm or tummy. I was using my thigh at first, and, in addition

to the initial reactions of welts, I was giving myself big bruises.

I switched to my tummy and eventually stopped getting the welts, but

I still leave small bruises on my tummy. Fortunately, those are

hidden.

Sandy

[Moderator's Note: The difference between Kineret and Enbrel is that

Kinerat is injected DAILY, whereas Enbrel is injected 2x/week. So I

could see the problems with injecting that often.]

August 8, 2002

Just a note to say I understand how nerve wracking it can be to start new

drugs like Methotrexate, or Enbrel... I can only speak from personal

experience about MTX. I have been injecting it for almost 3 years, my dosing

has gradually increased from 10 mg per week to where I am now at 20 mg. I

was frightened about starting this med after I looked it up and got a look at

that massive side effect list. One thing I want to share is that we are on a

much smaller dose that those who use MTX for cancer therapy.... we use tinier

doses and therefore suffer less side effect. My only problems once I

started injecting once a week (oral doses were very hard on my stomach) were

mouth ulcers and those are pretty well controlled by 1 mg of folic acid every

day but on the injection day.

I agree with Meghan, who's first response to why aggressive treatment is that

this is a progressive illness that must be fought, and fought hard to avoid

long term damage to joints. One advantage to MTX is that it is cheap, costs

less than $30 for several months worth depending on your dosage. Enbrel and

other biologics cost thousands and sometimes involve big insurance hassles,

so while I'm glad they are there, should I have to move on, I'm quite happy

staying on an " easier road " for right now.

Your physician will be checking your liver enzymes and monitoring your

condition once you begin this more advanced therapy, they keep a close eye on

everything.

I know beginning this therapy is frightening but I wanted to share that while

I was frightened too to start... I've been doing it for so long now that it

seems like no big deal. Hope your life feels that way soon. Deborah

August 9, 2002

> Sandy,

>

> I'm new to all of this and I'm not sure how it works, I just saw

> your email message and decided to email you concerning Enbrel. My

> rheumy just prescribed methotrexate for me after trying Celebrex and

> Vioxx to no avail. I have been doing research on treatments for PA

> and methotrexate sounds awful! I wonder why my dr. would want to use

> it instead of Enbrel or Kineret. I am a 34-year-old mother of four

> small children - I can't be sick!! The Enbrel information I received

> says people have died while using Enbrel. Do you or anyone else have

> any ideas what I should do? I'm going to get a second opinion as

> soon as possible - is there anything I should do to prepare to talk

> to another doctor?

> Thanks,

> Cheryl

Cheryl--I'm no expert on PA or the treatments, but I definitely have

my opinions!! Ha!! I think we all go thru the same process of

educating ourselves, once we get over the shock of learning what we

have. I have recommended before a website that I use---

www.arthritiscentral.com. It is set up by the clinic that I use here

in San , and it has a wealth of information about all the

different treatments that are available for us. You can get general

info from this site, and more specific information, videos, etc for a

fee--I think it is about $20 for the year. But, it is a great source

of information.

All the medication that we have available to us can sound really

frightening. Unfortunately, the ones with the least side effects

seem to be the ones that are the least effective. So, many of us

have progressed up the ladder of the medications--which is exactly

what your dr is doing with you. Usually, before Enbrel is prescribed,

the insurance companies want to try other meds first, esp since

Enbrel is so expensive. But, Celebrex and Vioxx are anti-

inflammatories and can help, but they don't stop the progress of the

disease. Many of my fellow PA sufferers have been fortunate in that

they may have aches and pains, but have not suffered major damage to

their joints. Then, others have had major problems and, as many of

the posts lately show, have really had disabilities result from this

disease. Who can predict which category we will fall in to? The

best we can hope for is to get a good doctor who will give us good

treatment, and that our bodies respond to that. And, sometimes, it

certainly takes a lot of trial and error to find that right

combination--and some of us are still searching.

But, out of 1000 members in this group, there are probably no two of

us alike in the amount and locations of our aches and pains, and we

all have our own treatments and medications--trying to find what will

work for us. I am always amazed at the many combinations that people

take--things I have never heard of!!

This group has been a wonderful source of information, encouragement

and support. Because of this support group, I am much more

knowledgeable about my options. When I see my dr and he brings up a

treatment, I usually know something about it already. So, at least

I'm not sitting there, going " Duh " and I can ask good questions.

I'm telling my secrets here, but I am 57--and I sure don't have the

time for this disease either and it certainly gets in my way!!

I probably haven't answered your questions but I know that others

will also respond. But, you are in the right place to get some

support and information.

Sandy

August 9, 2002

Methotrexate (MTX) is not near as bad to what they

say. It won't be until January of next year before you

could get the Enbrel. Start on the MTX now. Make sure

you get frequent blood work at first. It can do liver

damage, but ussually not likely. You need to have

aggresive treatment, or you will rapidly go down hill,

at as my experience goes.

Good Luck,

in Atlanta, GA

--- Troy & Cheryl Samons <troycheryl@...>

wrote:

> Sandy,

>

> I'm new to all of this and I'm not sure how it

> works, I just saw your email message and decided to

> email you concerning Enbrel. My rheumy just

> prescribed methotrexate for me after trying Celebrex

> and Vioxx to no avail. I have been doing research

> on treatments for PA and methotrexate sounds awful!

> I wonder why my dr. would want to use it instead of

> Enbrel or Kineret. I am a 34-year-old mother of

> four small children - I can't be sick!! The Enbrel

> information I received says people have died while

> using Enbrel. Do you or anyone else have any ideas

> what I should do? I'm going to get a second opinion

> as soon as possible - is there anything I should do

> to prepare to talk to another doctor?

> Thanks,

> Cheryl

> [ ] Re: Update on

> Kineret

>

> > I've temporarily, and maybe permanently, stopped

> Kineret. After 8

> > days of injections I begin to see huge red welts

> on my legs that

> > didn't appear to be " normal " injection site

> reactions. Some of the

> > areas were purple in color.

>

> Janine--I know nothing about Kineret, but I do

> give myself Enbrel

> injections. Can you give them in your tummy? We

> had quite a bit of

> discussion a while back on injections, and you can

> give Enbrel in

> thigh, arm or tummy. I was using my thigh at

> first, and, in addition

> to the initial reactions of welts, I was giving

> myself big bruises.

> I switched to my tummy and eventually stopped

> getting the welts, but

> I still leave small bruises on my tummy.

> Fortunately, those are

> hidden.

>

> Sandy

>

> [Moderator's Note: The difference between Kineret

> and Enbrel is that

> Kinerat is injected DAILY, whereas Enbrel is

> injected 2x/week. So I

> could see the problems with injecting that often.]

>

August 9, 2002

Cheryl,

I currently take MTX, Enbrel and Vioxx. I can truly say that my main complaint

about MTX is the fatigue. I have not had the stomach problems or mouth ulcers.

I have taken folic acid since I began MTX and have never been prone to mouth

ulcers anyway. I have had no problems with Enbrel or Vioxx. I can not take

Celebrex because I am allergic to sulfa compounds. I know the package inserts

are terrifying but if you read an ibuprofen or dimetapp one you'd be frightened.

The drug companies have to list every possibility no matter how remote to cover

themselves in case of lawsuits. They usually list side affects for placebo too.

If you read very many of these posts, you see that all of us have different

reactions to different drug combos. It is just a " hunt and peck " proposition to

find the one for you. Try not to be scared and don't expect problems. We have

enough that are unexpected.; )

Eva

Troy & Cheryl Samons wrote:Sandy,