Enbrel

[Guest guest]

,

Do you know what DX they put the request for Enbrel under??????????? Also can

you tell me what state and insr. It is amazing that u were able to get this

thru the health insr. company as it is not FDA approved for or kids under

4(The age I may be wrong about) I am very impressed with your insurance company

! As we fought with the ins. comp. for yeas and got it thru compassionate use

Re: enbrel

-

we did not have any problems with the insurance company. It is

expensive, it will cost us $150.00 every 2 months. I think it is

worth it if it makes him feel better.

mom of preston 3

-- In , Bombardier <petish44@...> wrote:

>

> , I think you're right! It is much harder on the parents than

the kids! My son is 14 years old and just started 3 weeks ago. He

gets the Enbrel once per week . Dr. Kastner told us that we wouldn't

really see results before 4 to 6 weeks so we are still new at this.

PJ just got his 3rd shot on Monday and started a mild episode that

night so I'm crossing my fingers that we don't see another any time

soon. Good luck to both of us.

>

> Pat Bombardier

>

> p.s. I know that Enbrel has been tried on many kids with the

genetic disorders, fmf, traps and hids (my son has fmf) but I hadn't

heard of it being used for . I can't imagine an insurance

company that would approve it for that!

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>

[Guest guest]

Welcome To The Group Kdelano

Love and peace always

Shaun and Barb

[Guest guest]

Hi ,

Hmmm. I have BC of California. They will only pay for my

prescriptions costs for Enbrel through Precision Rx Specialty

Pharmacy, which is a mail-order pharmacy. Precision bills me only my

co-pay portion, which used to be about $425 before I enrolled in

Enbrel EasyStep (now I pay only $75). I administer it myself, with a

SureClick injector, weekly. You are correct about the reimbursement

limits with EasyStep (12 months, maximum $4,800 benefit.)

Can't EasyStep call your doctor, or vice versa to get you enrolled?

I was lucky to attend an informational seminar on psoriatic

arthritis, and met an Amgen rep who gave me an EasyStep card, but it

sounded like if you call the toll-free number, that EasyStep could

help work with your doctor/insurance to get you enrolled.

At the very least, I hope you get good results with Enbrel. I'm sorry

to hear about all the insurance woes, but why am I not surprised.

Aaargh. Even though it was " easy " for me to enroll in EasyStep, for

some reason, this month Precision Rx Specialty did not bill EasyStep

and instead charged me the full $425 again. I had to call Precision

THREE times and EasyStep TWICE to get the whole thing straightened

out. So bureaucratic!

The important thing is that you get better.

So, feel better soon!

--Vera

[Guest guest]

My doctor gave me the card the first time I visited her. Then I found out you

couldn't use it if you were on Medicare. It's supposedly for new patients:

zero co-pay the first six months and then a max co-pay of $75 for the next six.

Then you're on your own. I'm sure you can enroll by calling and they will send

you a card; but your doctor should have them, too.

Joanna Hoelscher

630-833-7361

[Guest guest]

Yes, give it some time. Sounds like it's helping, which is great. Will

keep thinking good thoughts for more improvement for you!

[Guest guest]

Will Enliven help if insurance doesn't cover the med?

I don't think mine covers it. This is insane; my

boss pays $700. a month for my plan and I'm not

covered?

I was on disability; I have until December to get on

it again without applying. I'm tempted.

Thanks.

[Guest guest]

Work with your doctor - a good one knows how to convince an insurance company to

pay for it.

Joanna Hoelscher

630-833-7361

[Guest guest]

I did, and hurrayyyyyyy!!! my copay is $20.00!!!!! thanks.

--- Joanna Hoelscher <joannahoelscher@...>

> Work with your doctor - a good one knows how to

> convince an insurance company to pay for it.

> Joanna Hoelscher

[Guest guest]

Daphne;

Best thing to do is contact Enliven/Amgen for patient assistance

programs for individuals whose insurance does not cover Enbrel. The

Easy Step program will cover up to $4000 per year for individuals who

have some health insurance. Talk to them to see what you might

qualify for. Also, ask your doctor if he/she could recommend some

programs.

Best of luck;

--Vera

> Will Enliven help if insurance doesn't cover the med?

> I don't think mine covers it. This is insane; my

> boss pays $700. a month for my plan and I'm not

> covered?

[Guest guest]

CONGRATULATIONS!

>

> I did, and hurrayyyyyyy!!! my copay is $20.00!!!!! thanks.

>

[Guest guest]

My daughter was on Enbrel for several years. She dealt with skin infections

mainly. I'm sorry to hear that your daughter is struggling with infections.

There are quite a few on the list who have been on or currently are on Enbrel.

My daughter was switched to Remicaid about 16 months ago and it has been a

better medication for her joint and fatigue wise. I know for many Enbrel has

been a wonder drug for them.

e

hatton81302 <beckyhatton@...> wrote: Hi - Our

daughter (5 with JRA) has been on and off enbrel over the

last 3 years. It seems to work well for her joints, however we have to

stop due to sinus infections that won't clear up. Most recently we had

to stop due to the development of nummular excema. Wondering if anyone

else had experiences with this drug?

Becky

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

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[Guest guest]

My daughter, Kaylee is on Enbrel and has been for about 2 years now. She is 5

with JA, Uveitis, Osteopenia, Disruptive Behavior Disorder and possibly Hidden

Asthma. Kaylee has been extremely tired and has had multiple ear infections the

past few months. She keeps a constant cough and they now think she may have

hidden Asthma. We will know more on that on FEb 18. She is currently taking

Singulair to see if it clears up the congestion and stuff she has been having

the past few months. Kaylee has also had some skin issues from time to time as

well. We will be talking to her Rheumy about these issues on Jan 18th to see if

we can possibly make some changes in her meds. She currently gets Enbrel twice a

week, Methotrexate once a week, both my injection. She takes Folic Acid,

Prevacid, Naproxen and 2 different eye drops for the Uveitis, Predisolone every

2 hours, dialation drop twice a week. She is currently on Amoxicillan for ears

and Singulair to see if it helps with the cough and other issues.

I tend to think all the meds play into other issues and is a great concern.

Hope this helps some.

and Kaylee, 5, poly, uveitis, Osteopenia, DBD and possible Hidden Asthma

enbrel

Hi - Our daughter (5 with JRA) has been on and off enbrel over the

last 3 years. It seems to work well for her joints, however we have to

stop due to sinus infections that won't clear up. Most recently we had

to stop due to the development of nummular excema. Wondering if anyone

else had experiences with this drug?

Becky

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[Guest guest]

When I went on Embrel last August, literally overnight I had reduced swelling in

my legs and ankles but the pain relief came much, much more slowly. In fact, it

was so gradual that I hardly noticed it until one day I suddenly thought: I'm

moving a lot easier and I don't hurt nearly as much. It almost came as a

surprise. Don't give up: I think even the mfg says it takes a good 2 months to

get full relief and for me it may have been even a little longer. But it did

work wonders eventually.

Joanna Hoelscher

630-833-7361

[ ] Enbrel

<<As of tomorrow I will have been on Enbrel for 6 weeks (injection once a week)

and so far I have not noticed any improvement.>>

[Guest guest]

Are you taking the 25 mg shot or the 50 mg? Are you taking it with or without

MTX. Enbrel was a miracle drug for me. I started with a 25 mg shot twice a

week. But I got immediate results. I have know people that required 3 months

for any significant change. I have also known people who got no relief at all

from it. There is no common with this disease. Enbrel is about 55% effective

for PA from what I have read. If you are one of the unlucky 45% you may need to

try something else, increase the dose, or use it in conjunction with MTX.

Something you should discuss with your rheumy.

---- <cat1657@...> wrote:

> As of tomorrow I will have been on Enbrel for 6 weeks (injection once a

> week) and so far I have not noticed any improvement. So many seem to do

> very well with this med, but so far for me...nothing. Is it common to

> take this long to find relief with Enbrel?

>

> Thanks

>

>

[Guest guest]

Jackie - I found that letting the Humira sit for 40 minutes rather

than 30 makes a difference in the amount of burn or sting. Also,

I've quit using my thighs altogether - it's much more comfortable in

the stomach! The thighs burn much worse more often.

" S. Zorzi " <szorzi_1999@...>

[Guest guest]

I am Enbrel also, but I use the prefilled syringe in the top part of

my thigh and it also burns, sometimes worse than other times. I asked

the pharmacy where I get it from about the burning and they told me

it was because of the preservative in it.

Hope this helps a little.

Deana

[Guest guest]

Hi Jackie,

I don't use the sureclick, I use the prefilled syringe, but yes, I do

find that every injection is different. Sometimes it does not hurt at

all and other times it really burns...even though I feel like I do the

injections just the same every time.

I do give my injections in the top/front of my thighs. I tried it in my

stomach because that seems to be the place that most use, but I prefer

the thighs. I think it is just a mental thing though. There is just

something kinda scary about sticking a sharp object into your stomach!!

[Guest guest]

I have never used the sureclick but have heard others say that when they

switched to the regular injectible, there was far less pain. I give mine in the

abdomen and it's very easy. The needle is so small, I've found that if I just

" jab " it in very quickly, I don't feel it at all. However, the trick - for me -

is to then push the syringe in very, very slowly. If I push it too fast, it

does burn. I also ice for a few minutes before injecting. To avoid injection

site reactions, I switch sides each week and - given that you get four

injections per month - it's easy for me to remember: 1 and 3 are in the right

side, 2 and 4 are left. I would seriously suggest you investigate the

possibility of switching. I was skittish the first time: took me about 2 hours

to get the nerve to try it but it was a cinch, once I did.

Joanna Hoelscher

[Guest guest]

I am on Humira and use the pre-filled syringes. I leave them out to warm

for about 30 min. And do them in my thigh. Yes, they sting a bit but not a

big deal. I usually use mid to upper thigh and I alternate thighs. I've

never done them in my stomach. Never did Enbrel there either. It always

kind of scared me although people have told me it is less painful. I think

I'll have work up my nerve and try it there next time. I'm always ready for

something with less pain.

[Guest guest]

Jackie,

I have been on Enbrel over four years and I used to alternate from the stomach

area to the thigh. I did hurt at times in the legs and had a few bruises on them

also. I now only use each side of the stomach around 2 " out from the belly

button. I hardly ever get any pain from my twice a week shots. There is more fat

in the stomach area, and I stick myself pretty quickly for painless injections.

(Don't hold back, hold the angled part of the needle towards you and stick it in

@ a 45° angle, fast. Then exacerbate.. is that correct??? Make sure the needle

and skin are dry. ) I do mix the 25 mg shots, let them sit about 10 minutes

and swirl again to a clear liquid before injecting. 10 minutes lets the med and

solution mix and warm up enough for me. Don't let your med sit out too long, you

know it has to be kept cool. You can take the shot in the back of your upper arm

also, but my kids are too chicken to help try that one! Good luck on finding

your targets! Oh, never tried

the sure click, is it easier???

Happy Friday everyone, have a nice weekend!!!

Dan

[Guest guest]

Trish, I am glad that the Enbrel worked for your daughter. It has been a miracle for us as well. My daughter complains about the shots as well, but hers is not the needle part, but it hurts when I inject the medicine into her arm. The doctor finally told us the other day to leave the medicine out for 10 min prior to giving the shot, and that should help. It did! It no longer bothers her! She said any longer then that, was like injecting plain ol' saline in her arm.

I often thought about setting up my daughter with her own email acct. She is 9 1/2, so I worry about it....but she is a mature 9 yr old. I am sure she would love to email some kids as well, that have arthitis too. Someone that knows what she is going through.

Helen

Enbrel

I just wanted to thank everyone for there input on the Enbrel injections. started the injections and I cannot believe the results. She is able to walk and run and get up after sitting and sleeping with little or no stiffness. The swelling in several joints has gone down, she is so happy. It is great to be able to see her acting like a kid again.We are still getting adjusted to doing the injections but it gets easier, the more you do it. I hope my Dr. will cut back on the MTX, I still worry about the effects of all of these drugs on her.One more question, would like to email or post with other kids that have JIA (JRA/JA), is there a site that anyone knows of or do the kids on this group email?If anyone knows, please let me know.Thanks, again for all the wonderful support on this group.Trish (-11;Poly JIA)

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

i think someone here did start a group for the kids to email one another and is safe.... I don't know who did though..... Im sure someone will chirp up soon.. lolIssadoraOn Mon, May 5, 2008 at 3:01 PM, Helen Pense <hpense@...> wrote:

Trish, I am glad that the Enbrel worked for your daughter. It has been a miracle for us as well. My daughter complains about the shots as well, but hers is not the needle part, but it hurts when I inject the medicine into her arm. The doctor finally told us the other day to leave the medicine out for 10 min prior to giving the shot, and that should help. It did! It no longer bothers her! She said any longer then that, was like injecting plain ol' saline in her arm.

I often thought about setting up my daughter with her own email acct. She is 9 1/2, so I worry about it....but she is a mature 9 yr old. I am sure she would love to email some kids as well, that have arthitis too. Someone that knows what she is going through.

Helen

Enbrel

I just wanted to thank everyone for there input on the Enbrel injections. started the injections and I cannot believe the results. She is able to walk and run and get up after sitting and sleeping with little or no stiffness. The swelling in several joints

has gone down, she is so happy. It is great to be able to see her acting like a kid again.We are still getting adjusted to doing the injections but it gets easier, the more you do it. I hope my Dr. will cut back on the MTX, I

still worry about the effects of all of these drugs on her.One more question, would like to email or post with other kids that have JIA (JRA/JA), is there a site that anyone knows of or do the kids on this group email?

If anyone knows, please let me know.Thanks, again for all the wonderful support on this group.Trish (-11;Poly JIA)

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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[Guest guest]

Hi Helen,

I was interested in what you said about leaving the medicine out for

10 minutes. When we went for " Injection Training " , we were told to

leave it out until it reached room temperature or about 15 to 30

minutes. This is also what is states in the Enbrel instructions we

were given. It definitely helps, also, we administer the multi-use

vial that we have to mix (not the sureclick or pre-mixed) because

there no preservatives in it so it stings less. got her

injection last night and it did not go great but she loves waking up

and able to get out of bed and walk. She is complaining of a

headache and mild nausea. Could it be the Enbrel?

Anyway, thank you for your input.

Trish (, 11; Poly)

>

> Trish, I am glad that the Enbrel worked for your daughter.   It

has been a miracle for us as well.   My daughter complains about the

shots as well, but hers is not the needle part, but it hurts when I

inject the medicine into her arm.  The doctor finally told us the

other day to leave the medicine out for 10 min prior to giving the

shot, and that should help.  It did!  It no longer bothers her!  She

said any longer then that, was like injecting plain ol' saline in

her arm.  

> I often thought about setting up my daughter with her own email

acct.  She is 9 1/2, so I worry about it....but she is a mature 9 yr

old.   I am sure she would love to email some kids as well, that

have arthitis too.   Someone that knows what she is going through.  

> Helen

>

>

> Enbrel

>

>

> I just wanted to thank everyone for there input on the Enbrel

> injections. started the injections and I cannot believe the

> results. She is able to walk and run and get up after sitting and

> sleeping with little or no stiffness. The swelling in several

joints

> has gone down, she is so happy. It is great to be able to see her

> acting like a kid again.

> We are still getting adjusted to doing the injections but it gets

> easier, the more you do it. I hope my Dr. will cut back on the

MTX, I

> still worry about the effects of all of these drugs on her.

>

> One more question, would like to email or post with other

kids

> that have JIA (JRA/JA), is there a site that anyone knows of or do

the

> kids on this group email?

> If anyone knows, please let me know.

>

> Thanks, again for all the wonderful support on this group.

>

> Trish (-11;Poly JIA)

>

>

>

>

>

_____________________________________________________________________

_______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

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>

[Guest guest]

It is interesting to hear what different doctors have to say. At first, she told us not to leave it out at all, now we can do it for 10 minutes....I will have to read up on the pamplet to see what that says as well. The 10 min has made a huge difference for my daughter, and the pain of the medicine going in her arm. She told us at injection training and transporting the med's back home, to make sure we had a cooler, so it wouldn't go to room temperature, because it was like injecting saline.

We have the same kind of shots, where you have to put it all together, and mix it up. It doesn't make sense, why it would be kept cold in the fridge when storing it, but have it to go room temperature for injection......then we should be able to leave it out in the cabinet right? I am going to do some research and see what I can find out.

I am not sure about the headache and nausea, we have never had any side effects from it.

Helen

Enbrel> > > I just wanted to thank everyone for there input on the Enbrel > injections. started the injections and I cannot believe the > results. She is able to walk and run and get up after sitting and > sleeping with little or no stiffness. The swelling in several joints > has gone down, she is so happy. It is great to be able to see her > acting like a kid again.> We are still getting adjusted to doing the injections but it gets > easier, the more you do it. I hope my Dr. will cut back on the MTX, I > still worry about the effects of all of these drugs on her.> > One

more question, would like to email or post with other kids > that have JIA (JRA/JA), is there a site that anyone knows of or do the > kids on this group email?> If anyone knows, please let me know.> > Thanks, again for all the wonderful support on this group.> > Trish (-11;Poly JIA)> > > > > ____________ _________ _________ _________ _________ _________ _____________ ___> Be a better friend, newshound, and > know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ>

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[Guest guest]

Trish,

I was reading the pamplet that came with the meds, and saw what you were talking about. About leaving the meds out for 15-30 min, in order to get to room temp. However, that was for the Single use, prefilled sure click and the single use prefilled syringe. We use the Mulitple use vial (that you assemble) and it doesn't say anything under that one, about leaving it out to get to room temp. It only states that if the mixture is not dissolved and mixed together well after 10 min, to call them.

You should check with your doctor to be sure, but it sounds like what you are doing is working wonders for your daughter and that is amazing!

OH, I did see that nausea and headaches were a side effect from the Enbrel.

Helen

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