First Enbrel Injection

[Guest guest]

I'm currently on MTX and Indocin, but my RD suggested

I try Enbrel at my last visit. I'll probably go on it

in a couple of months so please keep me posted on

Randy's progress.

Good Luck

--- lmfriedrich@... wrote:

> Hi everyone!

>

> Thanks to all for your feed-back last week regarding

> male fertility and the various medications for PA.

>

> Randy goes in today for his first Enbrel injection,

> and then back again on Friday for his second (and to

> learn how to inject himself). He will now be on

> Enbrel, Lodine and Methotrexate... is anyone else

> out there on a similar therapy?? I'm really praying

> that this will work for him.

>

> All My Best,

>

>

=====

C McCullough

thelockhorns@...

__________________________________________________

[Guest guest]

What is Enbrel if I might ask? is it used primarily which MTX? I like the idea of giving myself shots than driving 25 miles to the nearest clinic to get my shot , which I had to do when I was on MTX. I pray it helps!

Lord bless,

[Guest guest]

Pat B -- that was the BEST explanation about ANYTHING that I have read. I've

never tried MTX, but if it is suggested, I think I would rather START with

Enbrel.....What do you think? You really should be a writer for consumer

publications! You're good. I'm printing this one and saving it for future.

Thanks, Bunny

[Guest guest]

Hi ,

Enbrel is something new and it suppresses your immune system.

It hasn't been released for PA yet, but my doctor told my insurance co.

that I have serro negative RA so that it would be OK'd. It works

great for me. I'm doing many strenuous physical things that I hadn't

been able to do in many years. I hope that things continue like this......It's

great. I'm also taking Sulfasalazine and Celebrex while on Enbrel.

I've only been on Enbrel for 5 weeks and haven't seen my Rheumy since I

started the Enbrel, so he might reduce some of my other drugs later.

Take care,

Vicki

patrick grady wrote:

From: "patrick grady"

<pmgrady@...>

What is Enbrel if I might ask? is it used

primarily which MTX? I like the idea of giving myself shots than driving

25 miles to the nearest clinic to get my shot , which I had to do when

I was on MTX. I pray it helps!

Lord bless,  !

;

Please visit our new web page at:

http://www.wpunj.edu/icip/pa

[Guest guest]

My understanding of " What Enbrel is " is...

Immunex Corporation developed a protien medication called Enbrel.

Because it is a protien it is an injectible (at this time). It is kept

refrigerated and the patient injects themself twice a week. Same amount

of medication whether the person is 99 pounds soaking wet or 275 pounds

and a weight lifter.

Enbrel was approved in the USA for RA patients in 1999 and since then it

was submitted to the FDA for approval for PAers. I never heard that it

actually got the go ahead yet but I only have PA and have gotten Enbrel.

Enbrel is VERY expensive. I hope it is like VCRs and calculators and the

price drops later on (we can hope).

Enbrel is a DMARD. It is used by itself or in a combo with methotrexate

or other DMARDs. Not actually physically combined but the person takes

more than one med (don't we all...NSAIDs, pain meds, DMARDs...).

What my doctor told me:

Because the methotrexate irritated my liver I had to stop methotrexate.

He said to try to get Enbrel approved by my insurance before settling

for Gold shots as a next attempt in fighting my PA. Reason being Enbrel

would NOT " go after " the organs like methotrexate/liver and

Gold/kidneys. After 3 months my primary insurance approved Enbrel and my

secondary approved it after 6 months.

My experience with Enbrel (so far):

The first few weeks I had minor side effects like upset tummy and some

constipation but that has passed. hee hee

About the fifth shot(?) I had raised up red welts appear at ever site I

had so far injected Enbrel into myself. Top of both thighs and on both

sides of the bellybutton. I knew from reading that Enbrel users 33% of

the time experience injection site irritation. After a few days the

irritatied skin cleared up and it has never recurred. Someone on this

list thankfully wrote and told me it had happened to her so I didn't

freak out wondering what was happening. A little Benedryl or

antihistamine would help if it happens to anyone else.

The relief from the PA was quick and I had to decrease my pain meds

bcause I was getting " loopy " and VERY happy. It's now been 5 months and

I am on 1/2 the pain meds that I was on prior to starting Enbrel. For a

few months I forgot about some of the joints that had bothered me for

the previous two years. No thoughts about my cane. No trouble turning

the key in the cardoor lock. Had a week where I actually felt a bit of a

bounce in my step.

The " Enbrel Dip " is what is called the decrease of effectiveness at

about 2 months after starting Enbrel. Don't know why it happpens but it

has happened for quite a few people that I have talked to about Enbrel.

Enbrel starts working again but not the first euphoric rush of feeling

good. That is how it has worked for me so far. Others say it didn't

help, or they were allergic and had to stop or they started a combo with

methotrexate or one of the other DMARDs. There are many posts about how

Enbrel worked for different people at the www.arthritis.about.com

message boards and there are archives for this list which can be read at

www.onelist.com after you sign in and click on on

your " My Groups " page.

Unfortunately, Enbrel doesn't seem to do anything for fighting

psoriasis. I have had to restart using Dovonex scalp solution and am

currently trying cocoa butter lotion (recently talked about on this

list).

------------

Stress can having you hurting more than normal since your body can only

fight so much and the energy used to fight the PA is deverted to fight

the stress and you end up spitting up your energy.

psoriasis cycles thru the year. You can be at a high outbreak time of

year or in a clear time for you when you start or stop taking meds etc

and blame the effectiveness or lack of effectiveness on the meds when in

reality your " cycle of p or pa " might be the culprit.

---------------

I'm thru typing now,

Pat B

[Guest guest]

Pat,

good post.

I am 4 weeks into Enbrel (+Arava +Vioxx +psoriasis prescriptions).

Regarding the dosage... quite right for adults, however, the

trials for JRA are based on weight - I think it's 0.4mg per kg in

weight up to age 17.

[OT: interesting that trials for congestive heart failure are being

run with 5mg & 12.5mg tests]

I have PA and fortunately my insurance company paid up on the first

asking [i met the necessary prior failures, MTX etc.]

Immunex intend to seek FDA approval for PA but it isnt through yet.

Doctors can prescribe meds " off-label " .

I noticed improvement on Enbrel in about 8 hours from the first

injection. In fact, my OT had taken measurements for range of motion

just the day before (Monday) and then the day after (Wednesday) and

saw significant increases. Grip strengths had tripled after 2 weeks.

I had been taking twice the standard Vioxx daily dosage because of

extreme inflammation and pain but stopped that as soon as I started

Enbrel.

The only side effect I've noticed is a significant build up of nose

& throat mucus - not a cold: just mucus that I have to clear quite

often. I'll be reporting that to the doc in a couple weeks.

Thanks for the warning about the 2 month dip - it's good to be

prepared. I wasnt prepared for the MTX termination flare-ups.

I'm sorry to hear that Enbrel hasnt helped your skin - Immunex are

doing trials on its' effectiveness on psoriasis. I have seen

significant improvements in the first 3 weeks and its holding steady

right now - I'm hoping it will start to improve more and not do

an Arava-effect (i.e. 6 weeks into Arava, skin started improving -

after another 6 weeks skin had improved to about where I am now after

the first 4 weeks of Enbrel. BUT then the psoriasis got the better

of Arava and it just steadily worsened back to where it was almost as

bad before starting.)

4 weeks into Enbrel, and I'm feeling much better - since I've read

that the full benefits arent usually effective until after 3 months

can I expect significantly more improvement? I still have lots

of room for improvement and hope Enbrel can justify its price.

Matt.

[Guest guest]

> I noticed improvement on Enbrel in about 8 hours from the first

> injection. In fact, my OT had taken measurements for range of motion

> just the day before (Monday) and then the day after (Wednesday) and

> saw significant increases. Grip strengths had tripled after 2 weeks.

> Thanks for the warning about the 2 month dip - it's good to be

> prepared. I wasnt prepared for the MTX termination flare-ups.

>

> 4 weeks into Enbrel, and I'm feeling much better - since I've read

> that the full benefits arent usually effective until after 3 months

> can I expect significantly more improvement? I still have lots

> of room for improvement and hope Enbrel can justify its price.

>

> Matt.

The two month dip doesn't happen to everyone. But it is nice to know

it might happen. Right? Forewarned? Well, at five months I have had a

few bad days. Don't know if it is stress induced flare or weather

related or what. I am enjoying each and every day knowing they are

better than what I was going thru two years ago. I don't take Arava

so don't know how that effects anyone as a combo. I do take Vioxx but

skip days depending on how I feel. I let my finger be my guide....

Just have to wait and see how we do

Pat B

[Guest guest]

I haven't, but many on the list have. Hope it works for you!

Good luck,

----- Original Message -----

From: <kringlemom@...>

< egroups>

Sent: Thursday, October 26, 2000 12:05 PM

Subject: Re: [ ] new to you guys

> hi i was wondering if anyone has tried enbrel? i just did my first

injection

> today

[Guest guest]

Im not sure hwo iam writing but i have been taking enbrel for 3 years

i am a guines pig in the experimental study for this drug

if you have questions please feel free to ask..

lois

ps. sometimes there is a reaction in the shot area, you may feel a cold or

shortness of breath, or difficulty breathing for a short period of time, but

iwould double up on all the natural cold medicine, liquid vitamin c, echinea,

and a good multivitamin

the benefits of more freedom of movement, and less stiffness seem to be

greater benefit than the temporaty side effects.drink lots of water, to avoid

toxicity..

[Guest guest]

thanks, i'm kathy i'll be 41 next mo from il

[Guest guest]

Lois & RA support friends-

I would agree with you about taking care against colds &

flu but I am worried about one suggestion you made.

I don't know Enbrel first hand so I am not sure how it

works - meaning I don't know if it works by supressing

the immune system. With that in mind, I would however be

very, very wary of taking ecchinacea with an autoimmune

disease. Ecchinacea is meant to strengthen the immune

response and most of us would be in rough shape if that

happened too effectively. Most of the drugs I take for RA

are immunosuppressive ( methotrexate, prednisone, and

plaquenil combo.) I was told that taking ecchinacea would

be counterproductive if not down right dangerous. I may

be too conservative but I don't even take vitamins or

herbal supplements without running by a doctor.

The prednisone reduction tips and the 10 patient tips

were wonderful.

I too have had good fortune with RA doctors. My first

rheumatologist was at St. Louis University (St. Louis

MO). His name is Dr. Terry . I was in law & grad

school and I credit him with seeing me through that

process without dropping out. He and my family physician,

Dr. Herbert Helmkamp, now deceased, were not only great

Drs. but wonderful moral support. I credit them with

keeping me walking and working.

Here in Saginaw, Michigan, I have seen Dr. Tangsintanapas

Penput. Her approach has been conservative but

compassionate. Dr. Lamberto Eugenio covers for her when

she is not in town and he has been great during a couple

flares (always happens when my Dr. is out of town.) I

also was impressed with the rheumatologist I saw at Mayo

last spring on a multidisciplinary consult. His name was

Dr. Mason. Very bright- very compassionate- very

reassuring - not patronizing in the least. I am fortunate

that I have a close friend who is a nurse and my

(twin) sister's boyfriend who is a family practitioner. I

try not to talk business with them - but I know they were

lifesavers last winter when I developed the embolisms -

they were very reassuring to my mom and sister. My friend

Joan is going to spend the night at the hospital after my

surgery in November (my own private nurse- how's that for

service) and has taken the weekend off to be with

Sharon and Mom ( and me.)

My biggest complaint with medical personnel(not just

docs) is their treatment of people as if they were their

illness - and I think - when one has a chronic disease-

they brush aside real pain issues. I'm sure its a defense

mechanism but I am always tempted to tell them to try

research (lab only) or pathology if they are unable to

develop social skills. ( I actually had an LPN regale me

with stories of people who died of embolisms while I was

in the ICU stepdown unit - how sensitive huh?. I talked

to her supervisor.) Oh well my experience is more good

than bad however.

Sorry this is my own digest. Thanks for all your

suggestions.