Finally!!! Humira today!!

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Dexky

Dexky

To save time...Ask Dusty!
Joined
May 8, 2010
Messages
6,732
Location
Kentucky
EJ did his loading doses for Humira today!! He had no problems at all. I asked if it hurt and he said the pens don't hurt at all but the med burns. I asked how long and he said 1,2,....10, that long :). So far so good! He's sitting here playing his beloved x-box...all smiles!!!
 
Gave me the biggest smile for 1,2,....10, that long :D (okay..maybe longer :) )
I hope it works for him Mark

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Hurray, Mark, that's good to hear! EJ is even more of a superstar than I'd thought. Here's hoping it's all uphill from here!
 
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YEE HAW!!! Excellent news. I am so, happy, happy, happy to hear this Dex!!!

Onward and upward bro. I hope you are spoiling EJ!

Loads a love, :wub:
Dusty. xxx
 
What wonderful news !!!

That's so great to hear! I hope it continues working forever and a day!!
:goodluck::goodluck:
 
Humira is good stuff. Leaving it out for 20mins before injecting helps. As does a post-injection treat - bit of cake/biscuits/etc!
Hope it works well.
 
Thanks Beth! I've read some on the Humira club and saw that you prefer stomach injections. EJ said he took the first in the stomach but told the nurse to try the thighs for the next. He said it was much better in the thigh!! Thanks for the tip, I'm sure room temp. would help!
 
I'm too much of a wimp to try injecting into the thigh - tummy works for me so I just go with that! Some people prefer thigh, guess it just depends on how sensitive different bits of you are.
 
Do you do pens or syringes? I think EJ is so fascinated by how the pens work that it helps alleviate the apprehension.
 
Pens. One of these days I'll try taking one apart because it does look a fascinating contraption.

Apprehension, yes... I manage to just switch off and think of the good it's doing. It's so routine now, wash hands, swab, click, ahhhh, cake! Any side effects I just sleep off as I head for bed shortly after - usually headache, sometimes groggy feeling.
 
Thanks Beth. I do see that you keep up with the Humira club posts. You're sort of the undesignated humira club monitor. I'm glad to know you're on here if I have concerns!
 
:allright:

Way to go EJ!!
Fantastic news Mark, hope it works for a long time to come
Good Luck
xxxx
 
YaY!! :banana: You must be so proud of your son! It seems I was the only one who used syringes.. as was said above leaving them out for a bit and ice the area he is going to poke. He is such a brave little boy. Kudo's for EJ!
 
He discovered X-Box!!! I have to pry him from it with a crow-bar!! He did mention the other day that he was changing his EJ character!! Gonna be a little more shaggy haired which is much more realistic!

When are you and Dusty gonna reveal your secret about all the different smilies???
 
I'm so behind! EJ RULES!!!!!!!!!!!!!!!!!!!!!!! I'm proud of him like he's mine or something.

Big fat southern fried hugs from your fellow Ky crohnies!

J.
 
Brian started his Humira in January. He was a superman in the beginning. We're going thru a bit where he's realizing its EVERY two weeks! The weeks go by fast. He has gotten more apprehensive each time. So I asked him this last time...are you going to keep up with this? He said, well ya mom, I don't want the cramps. I asked him which is worse, the shot or the cramps. He said, the cramps. I just wanted to remind him what life was like before Humira. I know he'll get past this period, he went thru a lot the month of Dec... He's tough. Its nice to do it all in the comfort of our home. Dad is starting to feel the weight of it a bit...he's the shot deliverer. (He was Dr.Superman in the beginning too.) No cramps since...and no bad reactions...and Brian is gaining weight and looking so healthy...so it appears to be working. May 18th is blood test and we will know for sure if he's in remission on the inside.
 
Where does Brian take his? EJ got his first in the belly and hated that but says it's much better in the thigh!
 
He takes it in the thigh too. Afterwards he lays there for just a bit, then he up and moving around. Happy happy its done! I think he just psychs himself during the 5 minutes of icing his thigh. I do think the med burns, but is over quickly. He said kinda like a bee sting.
 
Dexky said:
He discovered X-Box!! I have to pry him from it with a crow-bar!! He did mention the other day that he was changing his EJ character!! Gonna be a little more shaggy haired which is much more realistic!

When are you and Dusty gonna reveal your secret about all the different smilies???
Click to expand...

Oh yeah wait til girls come into the picture then you will never see him and he will wear all black clothes and an earring in his ear. Oh yes it will!

Then you will be on here saying :sign0085:
:ylol: hope the Humira works for him. The legs hurt more maybe tighter skin?
 
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Brian'sMom said:
But these little 11 yrs olds have no fat at all on their tummies! I think it'd be worse there. Brian wouln't let us try it there anyway
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Maybe I should of said tougher skin?? I used the syringes when I was on Humira and I cant comment on the tummy because I am not skinny ;)

But I found it hurt less on the belly but maybe with the pens, it could hurt more, dunno. Sorry I am not a big help!
 
I'll bet the syringe vs pen makes the difference. The pen puts the medicine in quickly. I've heard that's the good thing about the syringe...controlling the rate. But the pen is less scary looking for kids.
 
EJ got a quarter sized bruise from the one he did in the stomach but not even a mark left from the three in the leg!! EJ talks about that pen like it was designed by NASA or something!
 
I just wandered if the pen sort of has a quick pressure?? But yeah I can see kids liking it more, less scary. I had control myself and not pain but it does sting like a bee sting for a bit, but sometimes when you ice the area it helped. Keep me posted on email Mark to let me know how EJ is doing and you all have a wonderful summer!!! Go EJ!
 
Hey Mom, EJ has felt so good this last week!! It's amazing how much energy he has!! He's borderline hyper but I love it! I think it's just normal little boy stuff but I can't help but wonder if there may be some connection to the Humira! Any thoughts?
 
Wow! that is soooooo good to hear. And yes, I think it will be the Humira. Because about 4 days after my loading doses I did something - like run the vacuum cleaner around, and instead of collapsing in a heap afterwards I thought I'd do something else. I had some energy!

Hope it works well for the little guy!
 
Dexky said:
Hey Mom, EJ has felt so good this last week!! It's amazing how much energy he has!! He's borderline hyper but I love it! I think it's just normal little boy stuff but I can't help but wonder if there may be some connection to the Humira! Any thoughts?
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Mark,
I think the Humira is making the crohn's a non issue! My son is going about life like a 'normal' kid too. I just hope he has a growth spurt this summer so we can stop hearing, 'he's so small'! My son likes sports, so its more obvious at a baseball game that all the other 5th graders are twice is height and weight!! But he's only been on Humira since end of January. From EJ's picture it looks like he likes sports too. Good luck on Friday with your shot at home. I think that's the beauty of Humira...all done in the comfort of home. Since my son has 'kinda' forgotten about how he used to feel...he's started to think more about the shot...so we've been subtly reminding him at prayer time; "thank you to the scientists who've made it possible for Brian to feel normal again!"
 
Dex it very well could be. I know when my DIL fist started getting Remicade she said within 6 hours almost all her symptoms went away. That she felt like a new person!!! You know if we were feeling crappy all the time ( the word just fits ) & then all the sudden it's like a magic wand! Night & day! Black & white! I would be having more pep & then some! Little boys are so full of energy. I know Daniel has always been my steady one, calmer. But lately he has been more full of himself & by his own words he can't seem to concentrate on his homework & things. I don't know how much is the disease or just the meds to treat it. I know it is mentioned in the 504 plan at the ccfa.org. Good luck & Enjoy the lighter care free side of EJ. It just could be he is not having to worry about things!!!
 
Yesterday was the double second dose. He clearly doesn't like it but I think he takes some comfort in knowing from now on it's only one. He took them after school, then at 6 pm, he played an entire ballgame as catcher!! I don't think humira is going to be a problem for him:)

Oh, they won the game...which is a little rare this season!
 
YEE HAW!!! Fab news Dex! And a win to top it all off, can't get better than that...

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Dusty. :):):)
 
Dex - I'm LOVING that!!!!! What wonderful news!

Hunter used to play catcher some when he was EJs age. I love baseball!
 
He's a lefty J! I think pitching is more likely in his future:)! I love it too, especially when it's a bunch of kids playing!

Even baseball smilies!! Is nothing immune to smilies?
 
Brian tells us; What kid likes a shot...but its better than crohn's!!! We iced longer this time...definately makes a difference. Mark, Our boys are alike...we went to a baseball game too...major league tho! We always do something fun on 'Humira Day'. Brian played soccer the next day and played like nothing had happened the day before. Its so wonderful that this drug gives them their life back :)
 
Who's Brian's team Kathy? EJ loves Derek Jeter but I do my best to sway him to the Cards!
 
Well done EJ hope all goes well.
Dex, Beth and everyone who placed comments, I am 56 old male and about to take my first Humira pen injection tonight (Australian time) and after originally being putting off and being a bit apprehensive after I had a very bad reaction to Imuran that put me in hospital for 2 weeks, I am now ready to give Humira a go after hearing your positive comments.
Can anyone advise whether the Humira needs to injected at the same time of day, on the day due??

Thanks Mike (micro1)
 
Hey Micro and Welcome!

There is a Humira Club on the forum...

http://www.crohnsforum.com/forumdisplay.php?f=59

Re post your question there as you will be bound to get more that way.

You may also like to post a bit about yourself in the Your Story Forum so you can be given the welcome you deserve. Welcome aboard!

Dusty. :)
 
Yikes! Sorry Mike, I see you have already posted in the Your Story forum...:blush:

Dusty. :)
 
Hi Duskykat, thanks for the info, I have already done a my story a week or so back.

Rgds

Micro1
Past history,
Diagnosed Crohns mid 1980's
Prednisone off and on for abt 8years-
Major resection 1995- having sigmoid and some iliem removed
Bone density affected by prednisone- broke hip in 1997.
2002 Adhesion in bowel and more surgery
Remission till 2010 when further major surgery for another resection
April 2011 commenced Imuran after a week developed a severe reaction ending in hospital for 2 weeks inc ICU in a delirious state and devloping blood clots in lungs, now on warfarin for minimum 6 mths re clots.
Starting Humira 9/5/11
 
Yep, just read your story Mike. I am up near Armidale and my kids GI is in Port Macquarie!, small world ay? My son has just had sugery down at RPA.

Dusty. :)
 
Hi DustyKat, I was in Port Macq before moving last June when I had my last resection in Newcastle, now at Redhead near Charlestown area. Hope things are going ok for your sons. All the best. mike
 
Well since I have absolutely no experience with Humira at all, I will throw my hat into the ring anyway. So here's my two cents worth...

Since the injections are weekly I don't think it would be critical that they be given at the same time each due day. If it were me I would probably try to stick to a AM or PM time frame though.

Matt is doing fine so far, thanks for the well wishes. Sarah had surgery nearly 5 years ago and has been in remission since. I am hoping more than anything that Matt has a similar outcome!

Dusty. :)
 
Welcome Mike! EJ is so new to Humira, we wanted to give the second doses when we'd be able to keep an eye on him so we did it right after school. Beth, who you'll see often in the Humira club, takes hers just before bed because they give her a temporary headache otherwise. I hope it works for you Mike! Good luck!!
 
That is just awesome news. So glad he is responding well and EJ is lovin life! He is going to have a GREAT summer and good luck keeping up with him now!lol
 
I didn't know where to post this...I just couldn't keep it in... YEAH HUMIRA!! Brian had labs done yesterday, just found out his CRP is still normal...and SED rate dropped again! Since he hasn't gained much weight over the past 3 months, GI Dr thought maybe he was still having some inflammation. She talked to us about adding Methotrexate. So last night I tried to stay positive....And Hooray, his SED rate was at 14! (It was 73 in Mid January,and 21 -3 months ago) Humira is working all by itself :) School's out in 1 week I'm going to get my boy to add some pounds over the next 3 months!!
 
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Absolutely fab news Kathy! May it last a lifetime hun and happy eating!

:mademyday:

Dusty. xxx
 
Great news Kathy, heres hoping the crohns goes into remission after the humira treatment. and Brian can enjoy what children enjoy doing.

All the best Mike
 
Great news Kathy !

And WTG EJ !

I love all the great news and what Humira is doing for your kiddos ! :thumright:
 
That's great Kathy!! I hope we can be happy Humira parents together for yonks as Joan would say:)!!
 
Mark,
I agree, Happy Humira Parents...just that 'every two weeks' thing...ugh!! It comes fast doesn't it! I told my son about EJ, its comforting to him that a boy his age is on the same schedule. Good luck tonight, we'll be thinking of you all. (Do you give the shot? Dad's are tough too!)
 
Nah, Kathy, mom's a vet so she's the shot giver! Last week, EJ just dug his fingernails into my arm and grimaced. You know, I've been thinking this week if rather than an ice pack it may be better to give the spot a good open hand slap to prepare for the sting? What do you think?
 
He did not like the idea, so we just iced it!! Third shot last night and all is well:)
 
same here. Brian has gotten over the hump. Last time and this time, he's like; Oh well, just do it. His Dr has suggested he do it to himself. He's open to that idea, but not right now. His #'s being good has helped with doing it and moving on! Yeah!
We like the Humira over the Remicade. Humira is quick and doing it at home is awesome, don't you think. The other was a longggg process. A bit of me was relieved when he was allergic to it. I never asked you why EJ skipped the Remicade. Sometimes insurance gets in the way and makes the kids try everything in order of FDA.
 
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Just started it myself and he's right.....it burns like crazy the 1st 2 times for me then it got a little better.....good luck with the Humira....I will be right there with ya buddy....:)
 
Kathy, I'm not sure why. Remi was mentioned last year. In EJ's case, any decision is also considered by his liver spec.. Like you, I view Humira to be less invasive, so we were more than happy to go that route. You sound so upbeat Kathy. I know Brian must be doing well:)!!

Thank you Teresa!!
 
Just popping in to say Hi!
Glad EJ is ok and everything's working well with his Humira treatment!
Lotsa luv n stuff
xxx
 
Thanks Joan, he really does feel good but we won't really know until his next bloods. We think he'll want them done this coming week.
 
Yeah I didn't use the ice for my introduction shit but i promise you i will use it the next time lol.....Good luck EJ...hope it works great for ya!!!
 
EJ is my hero! Mark, this is straight, I would get so freaked, I would vomit before I did my shots. Buy him more xbox games! He deserves every single one of them!
 
@Kathy,

When Matt was first diagnosed and commenced on Pred and Imuran, and before everything went out the window big time :lol:, the GI was going to have us come back in 6 weeks and if there wasn't convincing clinical indications that he was responding to treatment he was going to put him straight on Humira. Remicade didn't rate a mention, I don't know if this had anything to do with where we live, distance wise...(((shrug))).

Dusty. :)
 
Mark,
I'm so happy for EJ and that his Humira adventure is going so well.
As for your comment;I do feel upbeat! We still have a day here or there where we see a bit of blood, or maybe a slight cramp, but that's getting more and more seldom. Also I've gotten to a place of accepting. I'm taking my que from my 11 year old!! The whole thing used to make me so mad...and the way others (even extended family members) would act so nonchalant. Then I decided; I don't want them to pity us, or treat us like fragile china. And certainly my son doesn't want special treatment. He wants to do what he has to do in private and then keep it private; The old "I'm normal now" that all our kids have expressed. So I decided to quit being a baby and take it as it comes...and all the while just have fun!! :)
PS: I've also read a lot of your posts and advise you've given and you are so positive and funny. A good role mode for us on this forum! I hope we always stay together on our Friday Humira days.
 
DustyKat said:
@Kathy,

When Matt was first diagnosed and commenced on Pred and Imuran, and before everything went out the window big time :lol:, the GI was going to have us come back in 6 weeks and if there wasn't convincing clinical indications that he was responding to treatment he was going to put him straight on Humira. Remicade didn't rate a mention, I don't know if this had anything to do with where we live, distance wise...(((shrug))).

Dusty. :)
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Maybe Humira is becoming more popouar over Remicade. You'd think it would cost insurance companies less since its given at home. Who knows.
 
Jab 4 last night and EJ was off to a friend's birthday sleepover!! Still going strong!!

We're currently waiting for crp values from his latest bloods. Fingers, eyes and toes crossed!!!

Hey Kathy! How's Brian???
 
Yee Haw! Excellent news Dex! When do you expect the results?

Got everything crossed too buddy!
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Much love, :Karl:
Dusty. xxxxxxxx
 
No way Dex! This is CRP right? It's a same day result Dex!

Argh...rev it up 'em bro. Don't be a SNAG be a redneck! Scare 'em witless!

Dusty. xxx
 
Hmm, we got everything but the crp next day! The numbers were all stagnant pretty much. I don't think EJ's bloods will ever be normal across the board. But they have hovered pretty near normal for the last several times. If he didn't feel well, I'd have lost my mind long ago!!

It'll be at least Monday now!!
 
I know mate. I'm sure if they have the CRP and there's a problem then you would have had a call by now.

:hang: in there bro!

Dusty. xxxxxxxx
 
Dex oh how frustrating!!!! As you say at least he is feeling OK! It's a good thing when our kids feel that way! But still you want to know his blood likes how he is feeling!!!

Brian'sMom my DIL was on Remicade I think her insurance paid somewhere around $13,000 a dose. The last 2 times she got it Monthly at double the dosage not sure if it was the same price or higher then. She now has her loading doses for the Humira & that bill was close to $8,000. I am not sure if that is a month supply as I am not too familiar with the drug & how they give it in the beginning with an adult? But ultimately I would think it will be less expensive.
 
Dexky said:
Jab 4 last night and EJ was off to a friend's birthday sleepover!! Still going strong!!

We're currently waiting for crp values from his latest bloods. Fingers, eyes and toes crossed!!!

Hey Kathy! How's Brian???
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I'm so happy for EJ. If he's feeling good, I'll bet his CRP levels will be good. Also I agree with Dusty, if the numbers were bad, you've had heard from them by now.
How's Brian???: His last blood test said his inflammation was coming down...and cramps are mostly non existant...but he's just not gaining weight like I thought he would by now. But he's also very active. I think he'll do ok now that he's home for summer. I have a question: He also seems to have some bowel symptoms from time to time. I've been expecting his poo to become normal since he's on Humira...but maybe that isn't going to happen because of the crohn's. What do you think? Not to be gross, we see diarrhea at least once a week, and bad smelling gas lately(All of May). And if he has logs, they are so skinny and soft...or pieces. Do you think that's ok? We've come to just be happy to see that. (And there's been No blood) His mood is happy and he says he feels good, so that's positive.
 
I actually spoke too soon. The SED and CRP numbers were there all along!! They are both in range so apparently the Humira is doing it's thing:)!! There's still some red numbers on his bloods though. Some are improving, some going slightly in the wrong direction. Overall, I'd say better than last time so promising at least!!
 
Great news Dex, I hope they just keep getting better and better! YAY for Humira!

Much love, :Karl:
Dusty. xxxxxxxx
 
Booyah for EJ!!!!!! :). I'm so glad things are still moving in the right direction. :)

J.
 
Ya, tonight was a good one. Got the leg good and numb with the ice and he didn't feel the burn. :) Give EJ a high five from us...two weeks ahead of no needles.
 

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