Started Enbrel

[Guest guest]

I have just completed my 4th injection of Enbrel. I have also had a very

quick response. At first I thought it was just " in my head " but now I can

say each day has been better, so if it is only my brain telling me I feel

better I will take that. The quick change was getting up in the morning, now

I am not stiff and hurting, my hands and feet are better than they have been

in at least 10 years. My wife tells me I seem to walk and move a lot better

and I know that the overall level of pain is down, sort of like a remission.

The skin has not changed yet, but I will take what ever I get out of this

med. I have not had any problems, no reaction at the site and only felling

better each day. Have has PS and PA for over 40 years, have tried everything

but this is by far the best med.

I notice that the number of people getting Enbrel has been stepped up, I had

to wait about 7 months. The Enbrel folks have a good support system set up

and provide all types of " free " stuff, even helping with the insurance

issues. If you are waiting I think you will find that it is worth the wait.

Bob in Virginia

[Guest guest]

In a message dated 12/26/2002 12:27:26 PM Eastern Standard Time,

magicman99@... writes:

> it was harder than i thought it

> would be to give myself the injection.

- those needles are so dull! Try to give it to yourself with the bevel

of the needle facing with the opening on top so that the pointed part goes in

first - very small, but look close and you can see the bevel.

Also, I have found that my stomach is easier to inject than my arm or leg

(bigger target??). This skin is softer there and it leaves less of a bruise.

Hope it's working for you!

[Guest guest]

WOW Bob! This is the news I needed to here. I am 28, and I will start Enbrel

in the next 2 weeks. You certainly made my day! Thanks for sharing.

In a message dated 12/26/2002 1:39:02 PM Eastern Standard Time, B66F writes:

> Have has PS and PA for over 40 years, have tried everything

> but this is by far the best med.

[Guest guest]

hi tracy, draw blood so i new the bevel went up but that didnt help much;).

how small of needle can we use. i am sure if you go too small it would ruin

the protien in the med. . thanks for the feedback...kyle...it was harder than i

thought it would be to give myself the injection.

> - those needles are so dull! Try to give it to yourself with

the bevel

> of the needle facing with the opening on top so that the pointed

part goes in

> first - very small, but look close and you can see the bevel.

> Also, I have found that my stomach is easier to inject than my arm

or leg

> (bigger target??). This skin is softer there and it leaves less of

a bruise.

> Hope it's working for you!

>

[Guest guest]

In a message dated 12/28/2002 6:39:55 PM Eastern Standard Time,

magicman99@... writes:

> how small of needle can we use. i am sure if you go too small it would

> ruin the protien in the med. . thanks for the feedback...kyle..

- I think some people use an insulin needle - but I'm not quite sure

how. That darn plastic stopper on the powder vial is so tough that I don't

think I could get a small gauge in there

[Guest guest]

Well gang,

The first set of injections (two a week) wasnt so bad. Those needles are

TINY! Nice office staff to my clinic firmly believe my legs are the best

places. (thighs) I did have my " needle reaction " a little bit after the

injections. Got a tad dizzy, but once I laid down in the car on the way

home, then ate lunch at home I was ok.

There was minor tingling in the site areas shortly after the injections.

Thanks to you guys, I knew that was coming. I have bruising in those

areas--almost looks like popped varicroise veings. Is this normal? (Ido have

bad veins!)

We are still battling the DHS system to get the home health nurse. My nurse

is not responding to their calls or my emails. ARRRGGG. But at least they

are nice enuf to do them for me until we get that straightened out. Being a

patient at the OU Dermo clinic for five yrs pays off--the staff has known me

for years.

Now I am curious how long it will take to start showing results.... I do

notice one side effect--I am having a little bit more gas and more bowel

movements. At least its soemthing I can live with--and cancelled school for

tmw to give my body time to adjust to the Enbrel.

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

Deaf Eskie, I know there must be many OU Medical schools, but are you in

Oklahoma? Your e-mail name doesn't suggest that, maybe it's Ottawa, Sylvia

[Guest guest]

Sylvia,

Yup, its OU as in Oklahoma.......

Smile.

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

[Guest guest]

Keep me informed about your Engril. I'm hoping to get some in my refrigerator

very soon. Sylvia in Cushing.

[Guest guest]

Hey ! I hope that the Enbrel turns out to be the blessing for

that it has been for Emma. She has been on and off Enbrel for

about 2 1/2 years along with methotrexate for poly JRA (just to

remind you). We do not vaccinate, so the Dr. cautioned us about

chicken pox - although I don't remember why the worry over it

specifically. Emma does carry antibodies for chicken pox, so we

think she has been exposed but never developed the symptoms.

Other than that the biggest thing we have found with Enbrel is that

it weakens her immune system and she catches everything coming and

going. She missed quite a bit of school last year for virus' and

such - more so than any joint-related symptoms.

We stress to her to keep her hands out of her mouth and away from

her nose and eyes, but don't have a lot of luck with it. Her sister

is a germ-o-phobe, but the one that needs to use caution would

probably eat dirt if I wasn't watching lol.

If Emma does get a virus and fever and so forth, we hold the Enbrel

and give her motrin and tylenol alternating to keep her

comfortable. She has also been prescribed a little something for

stomach upset for the times that we have to fight these virus' for

several days - the motrin can really do a number on her stomach.

Also, we have learned that her joints flaring are usually a sign of

an impending " bug " and will cause her quite a bit of discomfort

until her body manages to ight it.

Of course, everyone is different and I would run these things by

your doctor before using us as an example.

Feel free to email me any time with any questions.

Sandy and Emma poly

>

> has started Enbrel and there are only 60 children in

scotland on

> this drug so not alot is known about it... What precautions should

i

> take for exapmple i know about the chickenpox thingy but im not

sure

> what else. Should i avoid certain things or foods? We eat alot of

home

> made soups, stews and have loads of fresh fruit and veg... I

> neeeeeeeeeeed info from you guys as you know what you are doing

lol far

> better than me.

>

> We do our Enbrel on Mondays and Thursdays and Methotrexate on

Fridays.

> She is on 20mg of MTX so far. Her left knee is giving her pain

but

> there is no swelling and im told its her Enthesitis playing up.

>

> and

> SW Scotland

>

[Guest guest]

Thanks for the info i was googling the drugs you listed. Motrin is

our Ibuprofen and Tylenol is what we call paracetamol.... goodness i

wish we had universal names for things lol....

takes Paracetamol (tylenol) and Piroxicam (Feldene) i think you

guys call it... we call it piroxicam as standard so she cant take

Ibuprofen (Mortrin). She also has Codeine tablets to take (possibly

Tylenol3) i really gotta learn to speak American lol.

Why do you stop Enbrel when she has a cold or bug? She takes Mtx once

a week 20mg and we are hoping to reduce this drastically. She doesnt

use as much paracetamol or piroxicam since her joint injections which

is amazing. She still cant run and is prone to majoir joint pains

still. Her hands are still deteriorating but we are only on Enbrel

Injection number 3.

I hear you on the dirt eating thing. I have to drag her to the

bathroom to wash her hands before meals and she is one of lifes

eternally messy looking children... i could have her dressed and

perfect ready to go out, the minute she steps on the front door step

she looks like shes had a fight with a clothes crushing machine and

has hair like a wild child. Ive been telling her about keeping better

hygiene at least in the hands department(talking to a brick wall).

She is coping not to badly on the MTX but has alot of very upset

tummies.

Its Flu jab season here and i get mine because i have very bad

Asthma. has to get her due to Enbrel and the MTX but im wary

of introducing a jab when they cant guarantee its going to be the

right virus for the strain attacking this year.

Sorry im waffling again...

and HLA B27+ Enthesitis Related Arthritis and Psoriatic

Arthritis. (still smiling)

> >

> > has started Enbrel and there are only 60 children in

> scotland on

> > this drug so not alot is known about it... What precautions

should

> i

> > take for exapmple i know about the chickenpox thingy but im not

> sure

> > what else. Should i avoid certain things or foods? We eat alot of

> home

> > made soups, stews and have loads of fresh fruit and veg... I

> > neeeeeeeeeeed info from you guys as you know what you are doing

> lol far

> > better than me.

> >

> > We do our Enbrel on Mondays and Thursdays and Methotrexate on

> Fridays.

> > She is on 20mg of MTX so far. Her left knee is giving her pain

> but

> > there is no swelling and im told its her Enthesitis playing up.

> >

> > and

> > SW Scotland

> >

>

[Guest guest]

To answer your question: we hold Emma's enbrel if she has a fever (

not necessarily for a cold) because we never know for sure what is

causing it and if it is an infection - the enbrel would make it

harder for her to fight it. I am pretty sure our Rheumy indicated

that we should hold it if there is any chance of infection. Again,

I would just double check with your doc about this. Hope that helps!

Sandy

> > >

> > > has started Enbrel and there are only 60 children in

> > scotland on

> > > this drug so not alot is known about it... What precautions

> should

> > i

> > > take for exapmple i know about the chickenpox thingy but im

not

> > sure

> > > what else. Should i avoid certain things or foods? We eat alot

of

> > home

> > > made soups, stews and have loads of fresh fruit and veg... I

> > > neeeeeeeeeeed info from you guys as you know what you are

doing

> > lol far

> > > better than me.

> > >

> > > We do our Enbrel on Mondays and Thursdays and Methotrexate on

> > Fridays.

> > > She is on 20mg of MTX so far. Her left knee is giving her

pain

> > but

> > > there is no swelling and im told its her Enthesitis playing up.

> > >

> > > and

> > > SW Scotland

> > >

> >

>

[Guest guest]

Hi Everyone...........Started my enbrel 2 weeks ago. So far so good. I am on 4

mild darvecets a day till it works. Not taking anything else. Seems I am

allergic to a lot. The darvecets help a lot. I wonder if anyone is able to get

rid of the pain of RA completely on medication?

I am reading the support mail in one email every day. It's not as overwhelming

as getting each email one by one. I enjoy all the info. I am so sorry to hear so

many are suffering. Every one is in my prayers. God Bless...........Clora

[Guest guest]

Hi Clora,

Sorry to hear you are having so much pain. I was on Enbrel for several years

and had great results, I was almost pain-free for a long time. Unfortunately, I

had to go off of it to have surgery, and it didn't work after I returned to it.

Hopefully you will get relief out of it and it will work well for you.

I'm new here but everyone is wonderful and supportive! My thoughts are with

you!

Kate P-B

Sent from my Verizon Wireless BlackBerry

[ ] Started Enbrel

Hi Everyone...........Started my enbrel 2 weeks ago. So far so good. I am on 4

mild darvecets a day till it works. Not taking anything else. Seems I am

allergic to a lot. The darvecets help a lot. I wonder if anyone is able to get

rid of the pain of RA completely on medication?

I am reading the support mail in one email every day. It's not as overwhelming

as getting each email one by one. I enjoy all the info. I am so sorry to hear so

many are suffering. Every one is in my prayers. God Bless...........Clora

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

[Guest guest]

Hi Clora:

So glad the Darvocets work well for you. I am also happy that your

Enbrel is going so well for you. I hope you notice a big change in your

R.A., and that you start to feel very good. I also hope you can get rid

of all your pain.

Nice to see your post today. Wishing you many pain free days ahead.

God Bless you in all ways.

Hugs,

Barbara

>

> Hi Everyone...........Started my enbrel 2 weeks ago. So far so good. I

am on 4 mild darvecets a day till it works. Not taking anything else.

Seems I am allergic to a lot. The darvecets help a lot. I wonder if

anyone is able to get rid of the pain of RA completely on medication?

>

> I am reading the support mail in one email every day. It's not as

overwhelming as getting each email one by one. I enjoy all the info. I

am so sorry to hear so many are suffering. Every one is in my prayers.

God Bless...........Clora

>

[Guest guest]

Clora,

I hope the Enbrel will kick in, and start helping you. It is hard when

you can't take a lot of the meds. I know you can't take mtx, which

usually works better with the biologic meds.

I am still on Humira w/ the mtx. I've been on it quite a long time,

with no problems at all. So, I am going to keep it up. I know with all

the right meds, something is working for me.

As I wrote in another email, I am on neurontin for the neuropathy pain

and fibro, and it quit working. My doctor put me on Cymbalta, along

with the neurontin, and the fibro pain is gone. A lot of the pain I was

dealing with, was fibro. So, I'm catching a break right now.

I was taking 6 Hydrocodone a day, and I'm down to about 2 a day. So,

I'm very happy about that. The darvocet made me sick at my stomach, so

be careful with it. I've been on the Hydrocodone for many years, and

I've had no problems.

You take care, and I will keep you in my prayers. I hope you start

feeling better real soon.

Tawny

>

> Hi Everyone...........Started my enbrel 2 weeks ago. So far so good. I

am on 4 mild darvecets a day till it works. Not taking anything else.

Seems I am allergic to a lot. The darvecets help a lot. I wonder if

anyone is able to get rid of the pain of RA completely on medication?

>

> I am reading the support mail in one email every day. It's not as

overwhelming as getting each email one by one. I enjoy all the info. I

am so sorry to hear so many are suffering. Every one is in my prayers.

God Bless...........Clora

>

[Guest guest]

Tawny,

I am so glad that you're finally catching a break! That is wonderful

news! You've had such a tough time, and you truly deserve it!

Sue

On Jul 10, 2009, at 2:10 PM, tdianaok wrote:

> So, I'm catching a break right now.

>

[Guest guest]

Thanks Sue,

I needed this break, I hope it lasts a long while:)

Hugs,

Tawny