Re: questions about Humira

[Guest guest]

I was on Humira for about 9 months and I can tell you that the shot is very painful. You may want to try icing the intended injection spot first to make it numb.

and Rob 18 Spondy questions about Humira > Hi everyone,> I am new to the list. My daughter is almost 3 years old dx > with Pauci-> JIA July 2006 at 19 months old and uveitis March 2007. I > have to admit > that I have not been very active in finding support in the JIA > community. We have been very focused on her treatment of > uveitis. It > wasn't until someone mentioned this community to me that I > realized I > should be connected to this too! We just started Humira > with the first > injection last night. She has been on Methotrexate for over 2 > months > now (no success with finger joint or eyes) and get labs drawn > once a > month. I guess my question is to others who get this > injection, have > gotten this injection or give it to their child.... Is > there anything > I can do to make it less painful? My daughter is very > resilent and > tough. She doesn't cry with MTX nor bloodwork but with Humira > she was > out of control hysterical. Kicking, screaming, yelling, > crying you get > the picture. My husband had to start and stop the > injection 3 times. > It was a diaster. We do use the EMLA cream.> Is is ok to leave drug out of the frig. for awhile before giving > shot? > I had someone suggest this from uveitis board. Also I am > wondering if > the prefilled syringe is too big. My husband thinks we > should transfer > to another syringe. Any ideas out there? > Cheri> > >

[Guest guest]

Cheri,

My daughter is 11 and has been on Humira almost 3 years now. And yes tit does sting. It was described to me as breaking glass underneath the skin. We ice the spot. I mean ice like as cold as they can stand it on the skin. My daughter also does it in the top of her leg. Right in the thigh. I know some people do it in their stomach, and I would think that might be a bit tender. There is someone else on this board that is on Humira with their 5 year old daughter. It isn't a pleasant experience, but they have tried all sorts of things to get her uvitis under control, and Humira is finally working. They are very excited to be on Humira.

Send a message to Alia, and I am sure she will respond to your questions!

and Allie (11poly)

From: [mailto: ] On Behalf Of snooksmama@...Sent: Thursday, October 04, 2007 12:11 PM Subject: Re: questions about Humira

I was on Humira for about 9 months and I can tell you that the shot is very painful. You may want to try icing the intended injection spot first to make it numb.

and Rob 18 Spondy questions about Humira > Hi everyone,> I am new to the list. My daughter is almost 3 years old dx > with Pauci-> JIA July 2006 at 19 months old and uveitis March 2007. I > have to admit > that I have not been very active in finding support in the JIA > community. We have been very focused on her treatment of > uveitis. It > wasn't until someone mentioned this community to me that I > realized I > should be connected to this too! We just started Humira > with the first > injection last night. She has been on Methotrexate for over 2 > months > now (no success with finger joint or eyes) and get labs drawn > once a > month. I guess my question is to others who get this > injection, have > gotten this injection or give it to their child.... Is > there anything > I can do to make it less painful? My daughter is very > resilent and > tough. She doesn't cry with MTX nor bloodwork but with Humira > she was > out of control hysterical. Kicking, screaming, yelling, > crying you get > the picture. My husband had to start and stop the > injection 3 times. > It was a diaster. We do use the EMLA cream.> Is is ok to leave drug out of the frig. for awhile before giving > shot? > I had someone suggest this from uveitis board. Also I am > wondering if > the prefilled syringe is too big. My husband thinks we > should transfer > to another syringe. Any ideas out there? > Cheri> > >

[Guest guest]

Hi Cheri,

I don't post much, but when I see Humira come up, it usually gets me,

what a dble edge sword it is!

I have a 7yr old with poly on it. She's been taking it for almost 3

years I think. I too thought I had a resilient child until we met

Humira...it sure is a bear to deal with. We have tried soooo many

things. We tried ice, frozen bags of peas to sit on, solarcaine,

emla...none of that worked. We tried some breathing that helped a

very little bit. We got her to take deep breathes by painting her

nails & letting her blow them as we gave her the injection, bubbles

worked too...that was good 1 or 2x. We tried those sparkle wands

with gel in them to try & captivate her, that wasn't so good, a child

life therapist also suggested lava lamps. We gave her a doll and a

needle to play with, turned out her dolly had JRA too...that was a

little comfort, it was also interesting to see how she rationalized

the shot to her doll, but didn't do much in terms of making the

injection easier. We recently let her 'push' the medicine in. That

worked really well for about 4 times. And recently, since it's been

going so incredibly poorly and is almost ripping my family apart, we

tried it in her sleep. AHHHH SUCCESS!! She is a deep sleeper, and

we did ask her permission before hand. But on Humira days, we run

her ragged all day long. Put her to bed, wait 2 hours and go for

it. Most reaction we've had is a moan in her sleep & she rolls

over. We only told her about it the first time, and since we haven't

mentioned or discussed it at all. I also go in about every other

night and swab her leg with an alcohol wipe to keep her used to it,

incase that helps. But finally we can get the shot over with in 5

min compared to 1-2 hours of god awful negotiations, tears, some

screaming...and finally lots of screaming. We are finally thrilled

to have a system that seems to be working...if this fails, not sure

what we'll do next.

BUT..on the plus side, Humira works really really well for her. We

have no morning stiffness and she's into all sports and whatever she

wants. We hardly deal w/ arthritis at all...so that, we do consider

a HUGE blessing.

Oh and we use half the amnt that comes in the pre filled and we do

transfer to another syringe/needle. We've heard no problem to leave

it out for an hour, but warm, cold, fast or slow injections didn't

change much of anything for my kiddo.

I really hope you find some way that works for you...and most

importantly that Humira works for your little one!

All the best,

Alice

>

> Hi everyone,

> I am new to the list. My daughter is almost 3 years old dx with

Pauci-

> JIA July 2006 at 19 months old and uveitis March 2007. I have to

admit

> that I have not been very active in finding support in the JIA

> community. We have been very focused on her treatment of uveitis.

It

> wasn't until someone mentioned this community to me that I realized

I

> should be connected to this too! We just started Humira with the

first

> injection last night. She has been on Methotrexate for over 2

months

> now (no success with finger joint or eyes) and get labs drawn once

a

> month. I guess my question is to others who get this injection,

have

> gotten this injection or give it to their child.... Is there

anything

> I can do to make it less painful? My daughter is very resilent and

> tough. She doesn't cry with MTX nor bloodwork but with Humira she

was

> out of control hysterical. Kicking, screaming, yelling, crying you

get

> the picture. My husband had to start and stop the injection 3

times.

> It was a diaster. We do use the EMLA cream.

> Is is ok to leave drug out of the frig. for awhile before giving

shot?

> I had someone suggest this from uveitis board. Also I am wondering

if

> the prefilled syringe is too big. My husband thinks we should

transfer

> to another syringe. Any ideas out there?

> Cheri

>

[Guest guest]

Wow Alice,

I am just so emotional about this whole thing. I can perfectly

picture your houshold. It sounds to similar to mine to every way.

I have also heard of someone else giving the MTX shot while they are

sleeping too! You guys might be on to something. I just know my

daughter will be up all night after a shot. She is ver light

sleeper. If I have to go back in her room she wakes up so matter how

quiet I am. With that said I am sure we will attempt that strategy

at some point. It is just so awful. But you are right if it work it

will be worth it. On a side note.... We are appealing our insurance

copy right now that is not covering Humira. Does your insurance

cover it? Thanks so much for your post Alice.

I am thinking of you and your little one.

Cheri

In , " mom2dagny " <alice.cunningham@...>

wrote:

>

> Hi Cheri,

> I don't post much, but when I see Humira come up, it usually gets

me,

> what a dble edge sword it is!

>

> I have a 7yr old with poly on it. She's been taking it for almost

3

> years I think. I too thought I had a resilient child until we met

> Humira...it sure is a bear to deal with. We have tried soooo many

> things. We tried ice, frozen bags of peas to sit on, solarcaine,

> emla...none of that worked. We tried some breathing that helped a

> very little bit. We got her to take deep breathes by painting her

> nails & letting her blow them as we gave her the injection, bubbles

> worked too...that was good 1 or 2x. We tried those sparkle wands

> with gel in them to try & captivate her, that wasn't so good, a

child

> life therapist also suggested lava lamps. We gave her a doll and a

> needle to play with, turned out her dolly had JRA too...that was a

> little comfort, it was also interesting to see how she rationalized

> the shot to her doll, but didn't do much in terms of making the

> injection easier. We recently let her 'push' the medicine in.

That

> worked really well for about 4 times. And recently, since it's

been

> going so incredibly poorly and is almost ripping my family apart,

we

> tried it in her sleep. AHHHH SUCCESS!! She is a deep sleeper, and

> we did ask her permission before hand. But on Humira days, we run

> her ragged all day long. Put her to bed, wait 2 hours and go for

> it. Most reaction we've had is a moan in her sleep & she rolls

> over. We only told her about it the first time, and since we

haven't

> mentioned or discussed it at all. I also go in about every other

> night and swab her leg with an alcohol wipe to keep her used to it,

> incase that helps. But finally we can get the shot over with in 5

> min compared to 1-2 hours of god awful negotiations, tears, some

> screaming...and finally lots of screaming. We are finally thrilled

> to have a system that seems to be working...if this fails, not sure

> what we'll do next.

>

> BUT..on the plus side, Humira works really really well for her. We

> have no morning stiffness and she's into all sports and whatever

she

> wants. We hardly deal w/ arthritis at all...so that, we do

consider

> a HUGE blessing.

>

> Oh and we use half the amnt that comes in the pre filled and we do

> transfer to another syringe/needle. We've heard no problem to

leave

> it out for an hour, but warm, cold, fast or slow injections didn't

> change much of anything for my kiddo.

>

> I really hope you find some way that works for you...and most

> importantly that Humira works for your little one!

> All the best,

> Alice

>

>

>

>

> >

> > Hi everyone,

> > I am new to the list. My daughter is almost 3 years old dx with

> Pauci-

> > JIA July 2006 at 19 months old and uveitis March 2007. I have to

> admit

> > that I have not been very active in finding support in the JIA

> > community. We have been very focused on her treatment of

uveitis.

> It

> > wasn't until someone mentioned this community to me that I

realized

> I

> > should be connected to this too! We just started Humira with the

> first

> > injection last night. She has been on Methotrexate for over 2

> months

> > now (no success with finger joint or eyes) and get labs drawn

once

> a

> > month. I guess my question is to others who get this injection,

> have

> > gotten this injection or give it to their child.... Is there

> anything

> > I can do to make it less painful? My daughter is very resilent

and

> > tough. She doesn't cry with MTX nor bloodwork but with Humira she

> was

> > out of control hysterical. Kicking, screaming, yelling, crying

you

> get

> > the picture. My husband had to start and stop the injection 3

> times.

> > It was a diaster. We do use the EMLA cream.

> > Is is ok to leave drug out of the frig. for awhile before giving

> shot?

> > I had someone suggest this from uveitis board. Also I am

wondering

> if

> > the prefilled syringe is too big. My husband thinks we should

> transfer

> > to another syringe. Any ideas out there?

> > Cheri

> >

>

[Guest guest]

Hi Cheri,

Completely understand your emotional situation...sure have been

there, but can honestly say that after having htis awful disease for

5 yrs, things are much easier...and much of that thanks to humira, as

ironic as that sounds.

As for my insurance, luckily we are covered except for a $20 copay.

And trust me I feel very grateful for that. Last year we were even

able to buy in 'bulk', so I only had to refill 2x in the year...it

only cost $40 for the year...what a bargain! We are on BC/BS.

I really hope you get coverage and that it helps you little one and

brings about some much needed relief. Please keep my email and feel

free to contact me on or off line with any questions.

All the best,

ALice

> > >

> > > Hi everyone,

> > > I am new to the list. My daughter is almost 3 years old dx

with

> > Pauci-

> > > JIA July 2006 at 19 months old and uveitis March 2007. I have

to

> > admit

> > > that I have not been very active in finding support in the JIA

> > > community. We have been very focused on her treatment of

> uveitis.

> > It

> > > wasn't until someone mentioned this community to me that I

> realized

> > I

> > > should be connected to this too! We just started Humira with

the

> > first

> > > injection last night. She has been on Methotrexate for over 2

> > months

> > > now (no success with finger joint or eyes) and get labs drawn

> once

> > a

> > > month. I guess my question is to others who get this

injection,

> > have

> > > gotten this injection or give it to their child.... Is there

> > anything

> > > I can do to make it less painful? My daughter is very resilent

> and

> > > tough. She doesn't cry with MTX nor bloodwork but with Humira

she

> > was

> > > out of control hysterical. Kicking, screaming, yelling, crying

> you

> > get

> > > the picture. My husband had to start and stop the injection 3

> > times.

> > > It was a diaster. We do use the EMLA cream.

> > > Is is ok to leave drug out of the frig. for awhile before

giving

> > shot?

> > > I had someone suggest this from uveitis board. Also I am

> wondering

> > if

> > > the prefilled syringe is too big. My husband thinks we should

> > transfer

> > > to another syringe. Any ideas out there?

> > > Cheri

> > >

> >

>

[Guest guest]

Kim, I've been on Humira and methotrexate for a year The only side effects

that I really notice is nausea...feels kind of like perpetual morning sickness.

lol  I think that is more from the Methotrexate than from Humira. I also take

Lyrica...so not sure how that figures in.  If you read the side effects for any

medicine, it will scare you enough to not take it. For me, taking the medicine

is much better than the alternatives. I have days that I feel almost human!

Hope it goes well for you!

[Guest guest]

Kim,

I used Humira for several years and had good results with it, along with

Methotrexate. I was told that it wouldn't help the pain, but was designed to

help control further joint damage. I have heard some say it helped their pain. 

I have fibromyalgia and osteoarthritis, so not much helps my pain. I merely take

one day at a time, praying for a better day tomorrow, and praise the Lord, some

days I am pain free.  Those days I try to enjoy to the fullest. I chose to

change to Simponi when it was released, as it is taken once monthly as opposed

to the twice monthly Humira, and was advertised as also being formulated for

PsA. I wish you the best in your venture. It is definitely not a fun trip, but

with Simponi, I only have to stick myself once a month. I take lots of

supplements to try and keep my immune system up, including a good probiotic...I

feel this keeps me from having bouts of  bronchitis which I had quite often..

Good luck with your treatment,

Ann

[Guest guest]

Changed my life. No side effects.

Carol Cobb

[Guest guest]

Kim

I have had a wonderfull exp with Humira. first it burns on injection...numb

area with ice before...really helps, but I still dread that injection. . I

also had a headache for a few days and It took about 6 months to clear me

totally up all over and I have stayed that way for year and half now. No pain

either, no infection issues..even had surgery without a problem, swin flu, the

gammet. I work in a hospital as an RN and without this, I could not function,

and I mean not FUNCTION. they have an assistance program also and my copay is

just 5 dollars a month, hope it last..!

Enbrel helped with pain, but did not clear me up at all.

Karrh