Enbrel

[Guest guest]

Nae and ,

Just an idea: maybe you could ask to switch to the Enbrel you mix

yourself. The ingredients are a little bit different than what you are

using now.

Not an MD

On Fri, Aug 7, 2009 at 2:12 PM, Renae<renae1943@...> wrote:

>>

>> Thanks for your input. I hate to hear you have the itch & headache

>> too :-( My rheumy doesn't believe the headache is from the Enbrel. At least

>> that's the feeling I got from her nurse. She said to take extra strength

>> Tylenol. So  I've tried it & it's helped some. The itching has gone away &

>> hasn't returned since my last dose. Since you are in the UK, how long did it

>> take you to get approved for a biologic? I'm also on the 50 mg once a week.

>> I don't seem to have the flu symptoms like you. just the stinking headache.

>> What other meds aare you on besides mtx & pred.? Sorry for all the

>> questions. I'm just so interested in everyone's experiences. Nae

[Guest guest]

is right. I hadn't thought to mention that I'm still on the 25mg

twice-weekly Enbrel. It has no preservatives, and it might work better

for you.

Sue

On Aug 7, 2009, at 5:18 PM, wrote:

> Nae and ,

>

> Just an idea: maybe you could ask to switch to the Enbrel you mix

> yourself. The ingredients are a little bit different than what you are

> using now.

>

[Guest guest]

, I know someone that does that but I was a little leery about it b/c of

just plain fear =) My doc didn't even mention, so I figured she didn't want me

to use it. But it is a good thought for sure, thanks. Nae

>

> Nae and ,

>

> Just an idea: maybe you could ask to switch to the Enbrel you mix

> yourself. The ingredients are a little bit different than what you are

> using now.

>

>

>

> Not an MD

>

>

>

[Guest guest]

HEY THERE PAULA!! Good to see you! I remember you saying you self mix it.

Hmmmmmmmm I wonder. The doc has already approved another's month's worth (I

think). I see her on the 19th. Will check it out. But that means that just twice

as many injections. We'll see. How are ya? nae

>

> NAE..It's me..a....I take the 25 mg twice a week...and self mix it.

> That way i don't get a huge dose at one time. It may be better for you trying

> it that way.

>

> Hugs..a

>

>

>

[Guest guest]

I will probably check it out when I see the doc on the 19th, Sue. a

mentioned the same thing. Thanks for your input. I appreciate it. The itching

has gone away but these headaches sure haven't. Thanks. Nae

>

> is right. I hadn't thought to mention that I'm still on the 25mg

> twice-weekly Enbrel. It has no preservatives, and it might work better

> for you.

>

> Sue

>

[Guest guest]

Sue, so when you went to Enbrel, he didn't leave you on mtx for a while?

I've been on mtx & pred. for over 20 years and am ready to get off both.

Maybe it was a blessing in disquise that those other meds didn't work.

B/c it seems the Enbrel has been a Godsend. What a shame to have to jump

through so many hoops just to get the meds you need to survive such a

dreaded disease. Makes me angry. I've heard of so many other horro

stories like that.

I can totally tell the Enbrel is working b/c I have more energy. Just

hope the headache goes away soon. Thanks so much for your input. Nae

>

> Nae,

>

> I was not newly diagnosed when I started on Enbrel. The first

> medication my rheumy put me on was mtx. That helped my condition, but

> not enough. My white blood cell count kept going down, so he added

> Arava instead of increasing the mtx. The decline continued, and he

> took me off of those two meds and put me on Enbrel. I had to go a

> month without any medication while my insurance company was making

> them jump through hoops and trying to avoid having to pay for Enbrel.

> Finally, they approved it.

>

> I had been diagnosed with RA for about a year and a half when I

> started Enbrel. I'm so glad that it continues to work so well for me.

>

> Sue

>

[Guest guest]

Hi Lynn,

I let is sit out to room temp, probably about 20 to 30 minutes. I have

only done the injections in my thighs. I don't know why I've never done it

in my belly....maybe because it's not as firm as my thighs...know what I

mean? LOL, it's a way of saying it could be a bit thinner in there...LOL!!

Wishing you all the best.

Heidi in Mass.

A positive attitude may not solve every problem but it makes solving any

problem a more pleasant experience.

In a message dated 11/2/2009 5:55:46 P.M. Eastern Standard Time,

crj129@... writes:

Thanks to everyone that responded. We were told to let the sureclick sit

out of the fridge for 30 minutes. How long do you let it sit before

injecting? Do you inject in the thighs only? The bruise he has is on his

stomach.

We alternate between his thighs and stomach as the nurse instructed.

Lynn in Louisiana, hubby with rheumatoid lung (pulmonary fibrosis) caused

by RA, Sept 2008

>

> Hi crj129:

>

> I have been on Enbrel for 4 months now. I use the sureclick. I find it

is most helpful to take it out of the fridge and let it warm up first,

because if you inject it cold, you bruise, AND it burns going in. Plus, I ice

my

thigh 5 minutes before I use it (with the ice pack they send you), and then

5 minutes after. I havent had a problem. Once in a while you do bleed, but

I find that its when I dont let it come to room temp that this happens,

when the Enbrel is cold, its thick and viscous.

>

> Good Luck

>

> OKD

>

_Messages in this topic _

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[Guest guest]

Thanks to everyone that responded. We were told to let the sureclick sit out of

the fridge for 30 minutes. How long do you let it sit before injecting? Do you

inject in the thighs only? The bruise he has is on his stomach. We alternate

between his thighs and stomach as the nurse instructed.

Lynn in Louisiana, hubby with rheumatoid lung (pulmonary fibrosis) caused by RA,

Sept 2008

>

> Hi crj129:

>

> I have been on Enbrel for 4 months now. I use the sureclick. I find it is

most helpful to take it out of the fridge and let it warm up first, because if

you inject it cold, you bruise, AND it burns going in. Plus, I ice my thigh 5

minutes before I use it (with the ice pack they send you), and then 5 minutes

after. I havent had a problem. Once in a while you do bleed, but I find that

its when I dont let it come to room temp that this happens, when the Enbrel is

cold, its thick and viscous.

>

> Good Luck

>

> OKD

>

[Guest guest]

I was on it for 10 years and it worked wonders. I had flare ups once in

great a while, usually due to barometric pressure, that were either fatigue

or slight joint pain that didn't last but a day or two. Most of the time I

couldn't even remember I had RA.

_____

From: [mailto: ] On

Behalf Of Normsgrl@...

Sent: Thursday, December 17, 2009 8:50 AM

Subject: [ ] Re: Enbrel

Sue and a,

Thank you for telling me about your experiences with enbrel. I'm very

glad that it works for you both. I see that it does work for lots of people.

Do you still get flare ups once in awhile? Or is it like a remission? I

know... I know... everyone is different and I'll have to see for myself.

But I'm just curious?

Thanks!

Michigan

[Guest guest]

, I think that there are actually better drugs for RA than for OA.

I have trouble with my lumbar spine, coming from OA, causing pain in

my hip. I can't take NSAIDs because of a previous bleeding ulcer. I

take arthritis-strength Tylenol, and I have tramadol for times when

the pain is keeping me awake at night. Sometimes I also rub OTC creams

on my hip. I like ultra-strength Nuprin. I don't think that I have

much OA in other parts of my body; at least if I do, it doesn't cause

pain.

Sue

On Dec 17, 2009, at 3:24 PM, wrote:

>

> If anyone is reading this that has OA, what types of treatment can

> be given for that? I don't see my RA doc again until Feb and I'm

> just curious.

>

[Guest guest]

Sue,

Thanks so much for your response! I know this is an RA support group and up

until the last 3 months, I didn't even know I had " other " arthritis's. They

found the OA in my hips, my feet and the start of it in my hands thru x-rays &

other types of machine things..... And yes, I am the ripe age of 47 - so all can

throw out the theory that OA is " old " people's disease as it is not. I also have

degenerative arthritis in my neck and they aren't real sure what's going on with

my shoulders yet -- have some MRI's scheduled........(long story on the

shoulders)....Have an appt with a neuroligist soon.....but..... Yeah, I don't

have the stiffness of RA & the horrible pain THAT causes at least for now

!!!..... but I have other pains. WHAT A PAIN IN THE YOU KNOW WHAT THAT IS!!!!

 

It is KINDA a big downer, when they fix (even if it's just for a bit) one thing

then I get a whole group of other things........UGH!!! I am determined to h ave

a Merry Christmas though!! Nothing will get me down!!!

>

> If anyone is reading this that has OA, what types of treatment can

> be given for that? I don't see my RA doc again until Feb and I'm

> just curious.

>

[Guest guest]

Sorry the SureClick injection was painful, . Maybe someone in the

group will be able to give you some tips.

Lori's husband did not tell the group exactly what happened.

Not an MD

On Fri, Jan 1, 2010 at 11:44 PM, <Normsgrl@...> wrote:

> Hi all,

>

> My husband gave me my first shot of " Enbrel " today with the sureclick  pen.

>  My God!!  That hurt worse than any shot I've ever had in my  life!!!!!  I

> even iced it first.  Let the alcohol dry first.  And  man did it hurt!

>

> Sorry, I just had to vent about that.  

>

> Also.. I was wondering if anyone could please tell me what caused

> StitchingQueens sad passing??

>

> I'm so very sorry.

>

> Thanks,

>

>

[Guest guest]

Hi ,

Where did he give the shot? I usually give it my thigh, rotate them week to

week....I don't ice before, just put the alcohol, let the enbrel get to room

temp, 15 to 20 min, alcohol should be dry by then, and then just gently place it

on, push down the pen top and it will go in and release itself when it's done.

I don't know if that will help you, but I hope it get's easier and that the

Enbrel provides you relief as time goes on.

Heidi in Mass.

[ ] Enbrel

Hi all,

My husband gave me my first shot of " Enbrel " today with the sureclick pen.

My God!! That hurt worse than any shot I've ever had in my life!!!!! I

even iced it first. Let the alcohol dry first. And man did it hurt!

Sorry, I just had to vent about that.

Also.. I was wondering if anyone could please tell me what caused

StitchingQueens sad passing??

I'm so very sorry.

Thanks,

Michigan

[Guest guest]

Hi Heidi,

We did it on the thigh just before the knee exactly where the diagram shows. We

also let it sit out 1/2 hour before using it.

Does it maybe hurt worse in a muscle? Or should it be fatty where we give the

shot? Should I have moved it up higher in the thigh?

Thank you for your input. It means a lot!

Michigan

>

>

> Hi ,

>

> Where did he give the shot? I usually give it my thigh, rotate them week to

week....I don't ice before, just put the alcohol, let the enbrel get to room

temp, 15 to 20 min, alcohol should be dry by then, and then just gently place it

on, push down the pen top and it will go in and release itself when it's done.

I don't know if that will help you, but I hope it get's easier and that the

Enbrel provides you relief as time goes on.

>

> Heidi in Mass.

>

>

>

>

[Guest guest]

,

I'm sorry your Enbrel injection was painful. I was on Enbrel for several years

and also found it to be painful. I always skipped icing it, but had the best

luck alternating between thighs. I found it was less painful if I held the skin

taught when injecting.

Now that I self-inject methotrexate, I wish I had gone with the prefilled Enbrel

syringes instead of the autoinjector. The syringes for both the Enbrel and the

mtx I am using have tiny, tiny needles - I inject the mtx into my abdomen and

rarely feel the prick at all, literally.

If you continue to have a lot of pain with the autoinjector, talk to your doctor

about switching to the prefilled syringes. I wish I had, knowing what I know

now!

Also, Enbrel has a great support phone number which is staffed by RNs, they may

be able to give you some pointers to reduce pain.

Good luck and I hope it helps! It did work well for me for a long time.

Take care,

Kate in STL (mostly a lurker)

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Hi ,

I do mine about 3 to 4 inches up from the knee, closer to 4....i know for me the

times that I've screamed owie for 9 seconds is when I didn't let the alcohol dry

and it stung like crazy. When I'm patient enough and blow on my leg and

wait...it's all good. I feel a little OCD ish about my Enbrel routine, but hey

whatever works. LOL. How did you feel after your first injection?

Heidi in Mass.

[ ] Re: Enbrel

Hi Heidi,

We did it on the thigh just before the knee exactly where the diagram shows. We

also let it sit out 1/2 hour before using it.

Does it maybe hurt worse in a muscle? Or should it be fatty where we give the

shot? Should I have moved it up higher in the thigh?

Thank you for your input. It means a lot!

Michigan

>

>

> Hi ,

>

> Where did he give the shot? I usually give it my thigh, rotate them week to

week....I don't ice before, just put the alcohol, let the enbrel get to room

temp, 15 to 20 min, alcohol should be dry by then, and then just gently place it

on, push down the pen top and it will go in and release itself when it's done.

I don't know if that will help you, but I hope it get's easier and that the

Enbrel provides you relief as time goes on.

>

> Heidi in Mass.

>

>

>

>

[Guest guest]

Try and ice pack on your site and consider using your tummy next. I also think

the sureclick hurts more than the regular syringe.

Sent from my iPhone

On Jan 2, 2010, at 11:11 AM, " normsgrl " <Normsgrl@...> wrote:

Hi Heidi,

We did it on the thigh just before the knee exactly where the diagram shows. We

also let it sit out 1/2 hour before using it.

Does it maybe hurt worse in a muscle? Or should it be fatty where we give the

shot? Should I have moved it up higher in the thigh?

Thank you for your input. It means a lot!

Michigan

>

>

> Hi ,

>

> Where did he give the shot? I usually give it my thigh, rotate them week to

week....I don't ice before, just put the alcohol, let the enbrel get to room

temp, 15 to 20 min, alcohol should be dry by then, and then just gently place it

on, push down the pen top and it will go in and release itself when it's done. I

don't know if that will help you, but I hope it get's easier and that the Enbrel

provides you relief as time goes on.

>

> Heidi in Mass.

>

>

>

>

[Guest guest]

I have only used the syringe method but it was painless for me as I would rotate

in the tummy area. I would suggest NOT doing it in a muscle area but only in

fatty areas. If you are a thin person, have hubby inject in the area that is

under the arm below the shoulder  and higher than the elbow - usually everyone

has some flab there!

 

in SC

Hi Heidi,

We did it on the thigh just before the knee exactly where the diagram shows.. We

also let it sit out 1/2 hour before using it.

Does it maybe hurt worse in a muscle? Or should it be fatty where we give the

shot? Should I have moved it up higher in the thigh?

Thank you for your input. It means a lot!

Michigan

>

>

> Hi ,

>

> Where did he give the shot? I usually give it my thigh, rotate them week to

week....I don't ice before, just put the alcohol, let the enbrel get to room

temp, 15 to 20 min, alcohol should be dry by then, and then just gently place it

on, push down the pen top and it will go in and release itself when it's done. I

don't know if that will help you, but I hope it get's easier and that the Enbrel

provides you relief as time goes on.

>

> Heidi in Mass.

>

>

>

>

[Guest guest]

I am on the 25mg Enbrel that I have to mix myself. I inject into my

tummy, and it usually doesn't hurt at all. I've never had a shot in my

thigh, but just thinking about it gives me chills. It seems that it

would hurt really badly.

Sue

On Jan 2, 2010, at 11:11 AM, normsgrl wrote:

>

> We did it on the thigh just before the knee exactly where the

> diagram shows. We also let it sit out 1/2 hour before using it.

>

> Does it maybe hurt worse in a muscle? Or should it be fatty where

> we give the shot? Should I have moved it up higher in the thigh?

[Guest guest]

Hi,

Sue,

And to me there is no way I would use the other needles to inject into myself. I

know I wouldn't do it. To me the pen just makes it easier all the way around. I

know it's psychological too. , by the way, you have to make sure you have

your feet on the floor when you inject.

Heidi in snowy Mass.

Re: [ ] Re: Enbrel

I am on the 25mg Enbrel that I have to mix myself. I inject into my

tummy, and it usually doesn't hurt at all. I've never had a shot in my

thigh, but just thinking about it gives me chills. It seems that it

would hurt really badly.

Sue

On Jan 2, 2010, at 11:11 AM, normsgrl wrote:

>

> We did it on the thigh just before the knee exactly where the

> diagram shows. We also let it sit out 1/2 hour before using it.

>

> Does it maybe hurt worse in a muscle? Or should it be fatty where

> we give the shot? Should I have moved it up higher in the thigh?

[Guest guest]

Heidi, I was squeamish about giving myself injections at first, but I

soon became an old pro at it. The needles were the only choice I had

at the time I started on Enbrel; there were no pens. I don't believe

that the already mixed 50mg had even come out at that time. Once I

found out how much Enbrel helped me, I self-injections were a very

small price to pay.

Sue

On Jan 2, 2010, at 6:10 PM, sposy@... wrote:

>

> Hi,

>

> Sue,

>

> And to me there is no way I would use the other needles to inject

> into myself. I know I wouldn't do it. To me the pen just makes it

> easier all the way around. I know it's psychological too. , by

> the way, you have to make sure you have your feet on the floor when

> you inject.

>

> Heidi in snowy Mass.

>

[Guest guest]

Sue,

Sometimes my Rheumy talks about switching me over to MTX injections but I'm

still on 7 pills a week, I think he just

sees the twisted whisker look in my eyes! LOL. I suppose I would get used to it

as well, with everyones support on here, but

for now I'll keep trying to avoid it. The pen seems less threatening, less

harmful to me. Like it can't get stuck in me. I know that sounds silly to some,

but it keeps me going.

Heidi in Ma

Re: [ ] Re: Enbrel

Heidi, I was squeamish about giving myself injections at first, but I

soon became an old pro at it. The needles were the only choice I had

at the time I started on Enbrel; there were no pens. I don't believe

that the already mixed 50mg had even come out at that time. Once I

found out how much Enbrel helped me, I self-injections were a very

small price to pay.

Sue

On Jan 2, 2010, at 6:10 PM, sposy@... wrote:

>

> Hi,

>

> Sue,

>

> And to me there is no way I would use the other needles to inject

> into myself. I know I wouldn't do it. To me the pen just makes it

> easier all the way around. I know it's psychological too. , by

> the way, you have to make sure you have your feet on the floor when

> you inject.

>

> Heidi in snowy Mass.

>

[Guest guest]

Heidi, We do what we have to do, LOL.

Sue

On Jan 2, 2010, at 7:23 PM, sposy@... wrote:

> Sue,

>

> Sometimes my Rheumy talks about switching me over to MTX injections

> but I'm still on 7 pills a week, I think he just

> sees the twisted whisker look in my eyes! LOL. I suppose I would get

> used to it as well, with everyones support on here, but

> for now I'll keep trying to avoid it. The pen seems less

> threatening, less harmful to me. Like it can't get stuck in me. I

> know that sounds silly to some, but it keeps me going.

[Guest guest]

Hi ,

the Enbrel hurt so bad because the 50 mg dose has a very low pH. I find it

helpful to get the prefilled syringe and to inject it very slowly. If you are

afraid of injecting yourself, maybe your husband could inject the needle, then

you could push the syringe at a pace where you can control the pain. To get the

prefilled syringe, all you need to do is call your doctor and ask them for a new

prescription and specifically say " prefilled syringe. " . When you fill it at the

pharmacy for the first time, make sure to tell the pharmacist that you want the

prefilled syringe, not the autoinjector. I had a pharmacist order the

autoinjector anyway, even after I had the prescription changed. They didn't

realize how bad the autoinjector hurt, so I had to explain it to them. Being

able to inject it slow really helps me, the shot doesn't hurt at all when I

inject it slowly, but mam, that autoinjector really hurt. I hope this helps!

Autumn in Indiana

>

> Hi all,

>

> My husband gave me my first shot of " Enbrel " today with the sureclick pen.

> My God!! That hurt worse than any shot I've ever had in my life!!!!! I

> even iced it first. Let the alcohol dry first. And man did it hurt!

>

> Sorry, I just had to vent about that.

>

> Also.. I was wondering if anyone could please tell me what caused

> StitchingQueens sad passing??

>

> I'm so very sorry.

>

> Thanks,

>

>

> Michigan

>

>

>

[Guest guest]

Hi again Heidi:

 

    I know how you feel about needles.  That was me, but when the MTX pills

made me so sick, I had to switch to the injections.  I was frantic about doing

it, but I did it after my Rheumy showed me how to inject.  That was 6+ years

ago.  Honestly, I never feel the needle.  It is so very fine, and it never

bleeds.  Sometimes I get a funny feeling seeing the needle in me, but it passes

in a second.  It sure beats being sick from the MTX 24/7.

 

    Once you try it, you will be amazed how very easy it is.  Good luck if

you do inject.  I am here for you.

 

Monster hugs,

 

Barbara

> Sue,

>

> Sometimes my Rheumy talks about switching me over to MTX injections

> but I'm still on 7 pills a week, I think he just

> sees the twisted whisker look in my eyes! LOL. I suppose I would get

> used to it as well, with everyones support on here, but

> for now I'll keep trying to avoid it. The pen seems less

> threatening, less harmful to me. Like it can't get stuck in me. I

> know that sounds silly to some, but it keeps me going.