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Moving on to Humira

Thought I would go ahead and start the new thread for the new drug.

I've realized I truly suck at remembering the specifics of nurse calls and Dr. appts.

From my last thread you may remember the nurse called late evening and stated high antibodies to remicade starting humira and that she'd call the next day. To be prepared I had a notebook to take notes in for that call. Apparently, notes aren't my strong point, she gave a lot of info and this is what I have as notes:

px encompass rx

4 shots

2 week

2 weeks(yes, I have it written once singular and once plural)

Ambassador program

px en

Humira(with an arrow under it)

fax#

(and at the very bottom I have written) plates, cups bowls (and a huge bold check mark)

WTH! Anybody ever seen this level of dysfunction in notes taking? I think I intended to use keywords then go back right after the call and fill in notes. Obviously, that didn't happen!
 
Well it sounds like there was a lot of information to take in. I think the medical team should always put important info in writing. It's definitely hard to engage in a conversation and take notes at the same time.
 
We have an online portal so technically I could all the info there(through messages if I chose it over phone calls) and they do update appts with the important bullets of each appt with Dr. but not phone calls.

This was just me pointing out that note taking is not my forte! Ha!
 

crohnsinct

Well-known member
OMGosh Clash! You have me literally LOL! I agree with xmdmom...how on earth should you be expected to process all that info and take notes at the same time.

Have to admit, I am curious as to the role cups, plate and bowls play in Crohns disease management:rof:
 

my little penguin

Moderator
Staff member
Sorry about the notes
My take
Two loading doses
Week zero -4 doses
Week two -two doses
Then every two weeks after that

Of course check with your Gi to be sure ;)
 
Maybe it was an exercise in food display to help IBD kids consume more calories! LOL


Who knows but whatever it was I didn't get them together so somewhere something or someone is lacking cups, plates and bowls!
 
I'm not worried about it guys, the humira ambassador is supposed to go over everything when she visits. I just thought my note taking was hilarious!
 

Maya142

Moderator
Staff member
You made my spit out the coffee I was drinking Clash! So hilarious. M did the same loading doses.
No idea where the plates and bowls come in?!!
 
Maya142, that is exactly what I did when I picked it up and read over it. Like where was my brain as I was writing this!
 
That was hilarious!

I always get annoyed when the doctor calls without an appointment (with me!). Um Hullo! You are telling me this shocking, serious medical information unannounced and I am supposed to comprehend and take notes with a highlighter marker (all I can find) while a two year old feeds me playdough, and the 4 year old is singing the highlights from "Frozen" standing on an ottoman with a large wooden block as a microphone.

But the plates, cups, bowls???!!! OMGoodness, that is hilarious. It's like you got bored while he was talking to you. I think this one is going to haunt you in forum history. :)
 
LMAO, Pilgrim! I have been wracking my brain for the cups, bowls, plates...like some poor kid and his birthday party guests had to eat their fare right out of the box or a ladies luncheon was hastily turned from bring your on dish to finger food extravaganza! Sheesh!
 

Tesscorm

Moderator
Staff member
LMAO Clash!!! Read your post yesterday (but couldn't reply) and it's been giving me a smile since! And, MLP - have you ever considered being a code breaker? :lol: Clash can check with her GI but I'm betting you're right! :)

Plates, cups, bowls... :D Perhaps you were looking at your cabinets and thinking you'd reorganize?! :rof:
 
Definitely took better notes with the Humira Ambassador program lady. But, I still managed to screw things up.

Ambassador went over what she was mailing me, injection practice thingy, humira pamphlet blah blah blah then handed me over to pharmacy solutions to handle patient benefit care stuff. They took all the info and then needed something about the px. So called the GI nurse and she said they've already sent it through encompass rx. I don't know, what is what so I'm hoping the humira thing is just help to get certified and not some filing process. Also if my px ins is Caremark how can Dr. use Encompass rx? Remicade seemed such an easier process.

Oh and completely forgot to have C run by and get a tb test so he'll have to do it on the way to work Monday.

Hoping all this is worked out quickly.
 
They definitely want to get the money thing sorted out, big bucks med, so I imagine if they have something screwed up they will be in touch.

That said, we have a coordinator with Humira who is very approachable with all questions and is good about answering phone calls and emails. If you are worried - just get in touch so it doesn't "take up your air". (That's something my husband says when he's annoyed, cracks me up, but you know what I mean - who needs more on the mental list?)
 
Hey Clash you may like my blog. I got diagnosed crohns aged 17, im a 25 yr old guy, medical student in VA and new ostomate! I am making this blog check it out hopefully there will be something in there you can relate to. (I wish I had someone when I was a kid honestly that is a motivator for me)
 
Last edited by a moderator:
So still waiting.... The tb test was faxed back to the GI office Thursday so I'm thinking I will hear something this week.

On the Humira Ambassador side we have received the package with the Humira safety info, schedule keeper, symptom tracker blah blah blah... oh and the Sharps container.

My only panic area right now is the whole antibodies/reaction worry. With remicade, he was in lab surrounded by medicos with Humira it's just us. I'm just worried about a severe reaction.

Otherwise, all is well!
 

my little penguin

Moderator
Staff member
Due to DS reaction to remicade our Gi wanted us to do his first dose in the clinic.
The funny ( or not so funny part ) clinic nurse only thought it was a train mom how to give an injection session ( not necessary since it's the same as Mtx).
Her eyes went buggy when I explained why and she basically told me there wasn't anything else she could do there than I could do at home .
I didn't have the heart to tell her the allergy clinic was next door on the same floor I would be running there first regardless ( after I gave the auvi-q of course ;) )

No issues for DS except a injection site reaction when I used the back of the arm twice
Legs no issues
We now just give Zyrtec prior ( he was taking it daily anyways )
Good luck
 

Maya142

Moderator
Staff member
We also did the first dose at her doctor's office so they could teach us how to use it and watch for a reaction. By then, I knew how to give a shot, but M wanted to learn how to use the pen and she wanted a nurse to teach her :)lol: she didn't trust me!).

It's worth asking if you can do the first dose in a doctor's office - particularly if he's having 4 shots at once. They made us come in a second time when M went back on Humira last year because she had never done the loading dose before.
 
Right now it's set up for a nurse to come to the house for the training and first loading dose. I plan on discussing my concerns with the GI nurse but it will probably be a hard sell to C to get him to drive to the GI(2.5 hrs) just to allay my fears. I might could talk him into the GP but would that be any better?
 

Maya142

Moderator
Staff member
We went to the pediatrician when my older daughter was put on Humira. It made me feel more comfortable -- I figured if she had some sort of reaction they would know how to deal with it.
Whatever you decide, hope the shots go smoothly :ghug:
 
The GI nurse has talked him into the pen. She told him he'd still have the option of the syringe if he couldn't handle the pen. We're supposed to be getting a training kit with a pen to practice with but it didn't come in this kit I just received.
 

my little penguin

Moderator
Staff member
Just an FYI
Most GP offices are not equipped to handle allergic reactions at all.
My gp had a landscaper ( not a patient) rush in from across the street since he was reacting to a bee sting ( he didn't have his epi on him).
My gp said it was bad -they didn't have the equipment or meds there to handle it so they could only give 9-1-1 a call .

When DS gets allergy shots -he is only able to get them at the peds office
If we bring his own auvi-q
They do not have it on hand
 
Yeah that was what I was thinking. I guess I'll just go over my concerns with the GI nurse and see what she comes up with. I wouldn't be adverse to having it done at our local hospital just for my peace of mind but I know C would absolutely balk at that!
 
I'm going to call the GP but highly doubt they are equipped. I do remember they didn't allow C to have his allergy shots there when were considering them and the travel to the allergist was quite far, but not sure how that relates.
 
Clash that is funny about the plates and cups!
We had the same issue when we tried cimzia. Had to do it at the Gi office but then when she had an allergic reaction they didn't do anything. I ended up giving her Benadryl.
 
Okay, kimmidwife, if I drive more than two hours and they don't do anything if he has a reaction, they'll be seeing me have a reaction as well! LOL!
 

CarolinAlaska

Holding It Together
I'm going to call the GP but highly doubt they are equipped. I do remember they didn't allow C to have his allergy shots there when were considering them and the travel to the allergist was quite far, but not sure how that relates.
Probably relates a lot. 😞
 
The humira should be here soon. The pharmacy should have the px tomorrow and I already have the my humira card info(the card is in the mail)

Quick question: C has woken twice in the last week and the left side of his bottom lip is swollen. He can feel that is is swollen, their are no cuts or sores in the area. He hasn't bumped it or anything. He says he can feel when the swelling goes down but even after he says that it still looks puffy to me.

Is this a thing the GI should be aware of, I mean how could it relate to something he needs to know? I'm not sure what the GP would say other than virus or uti(his answer for everything) what other doc would this fall under?
 

my little penguin

Moderator
Staff member
Allergy or hereditary angiodema ???
Any extra swelling automatic call to allergist ...
Let us know what the doc says
Also call Gi as an FYI
 
MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.

Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.
 

my little penguin

Moderator
Staff member
Even if he hasn't had swelling before
Call his allergist
Same thing you would do for any Gi symptoms
Swelling of lips can go bad without warning
Good luck
 

my little penguin

Moderator
Staff member
Other health conditions
Other illnesses that can cause swollen lips include:

Cold sores: the herpes simplex virus can trigger cold sores and blisters that can become red, swollen and sore. The blisters may break open, leak a clear fluid and then scab over after a few days. They usually heal after several days to 2 weeks.
Cheilitis: a rare inflammatory disorder of the lower lip.
Cheilitis granulomatosa: a rare inflammatory disorder that affects young adults.
Melkersson-Rosenthal syndrome: a rare neurological disorder.
Lip cancer associated with excess exposure to sunlight.
Inflammatory bowel disease (Crohn’s disease, ulcerative colitis) can cause swelling of the lips.
From
http://www.m.webmd.boots.com/a-to-z-guides/swollen-lips?page=3

So definitely allergy and Gi
 
MLP he hasn't had swelling with his allergies before. He says he has woke up with it 2 mornings out of the last week. Next time it happens I'm taking a pic and scheduling an appt.

Oh my, he just came in and said he had googled his symptoms and it may be sleep apnea according to Dr. Google. I've created a monster.
It's probably the cup he's using! He needs more cups.
 

Tesscorm

Moderator
Staff member
Just catching up on this :)

Good luck with the shot! I hope all goes smoothly!

I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else... It certainly won't hurt to have it on hand.

With humira, is it likely that if a reaction is to happen, it will be during the loading doses?
 
Just catching up on this :)

Good luck with the shot! I hope all goes smoothly!

I would have all on hand for an allergy reaction - benedryl, epi-pen, anything else... It certainly won't hurt to have it on hand.

With humira, is it likely that if a reaction is to happen, it will be during the loading doses?
What I was told by the specialty pharmacy was that you would usually see a reaction within 24-48 hours after the first or even the second set of loading doses. She told me that if you can get through those - you are usually in the clear. I assume this means "in the clear" for the shorter term possible effects.
 

crohnsinct

Well-known member
Heck! I say call the fire department and National Guard to! Can't be too careful...safety first;)

Tell that lip to fall into step! No glitches days before first shot!
 
Ok, I'm fairly close to complete explosion...

The GI office uses a certain specialty pharmacy. I explained that it wouldn't be the one my insurance uses since ours is just one. Still everything got sent to their pharmacy.

So, GI pharmacy calls two days ago and says we had to transfer everything to the specialty pharmacy your insurance uses...um duh. They told me to call that pharmacy.
For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.

So, it has been 4 weeks since we first discovered C was moving to Humira, 1 week delay due to my own idiocy of forgetting to send C to get his tb test, another week delay because the GI never got the results from GP for tb. And overall delay because they went through the wrong pharmacy.

Maybe the cups, plates and bowls were to throw at the wall to release stress?!

C didn't not have a swollen this morning. He was to start the benedryl when he got off work. I left it out for him and texted him and left a not on the counter(I was asleep when he got in) yet he didn't take it.

Yeah it may take more than throwing dinnerware to work out the stress.
 
For two days they didn't have the transfer on file. It came in today. The rep was freaking awesome and was determined to get this expedited but it turns out the px sent from GI office didn't come with refills and the specialty pharmacy needs to have at least one refill to get the meds out to us on time after loading dose.
Typically, for a patient starting Humira/Cimizia, the doctor has to write two prescriptions. One is for the loading dose, as it needs to be dispensed all at once. The second is for the refills at the maintenance dose. I'm pretty sure the doctor can't write both of these on one script. Sounds like they only received the first prescription.
 

Tesscorm

Moderator
Staff member
Ugghh, Clash!!! That is so frustrating! You'd think these people deal with these issues all the time and would know how to best resolve them! Really hope it gets worked out soon!

And C forgetting the benedryl... So nice to know S is not the only one who forgets any and everything (and then conveniently forgets that he forgot and happily gets on with life)!!! :) (But, glad he didn't have a swollen lip!)

Perhaps a steady supply of plates, bowls and cups is not a bad idea! :lol:

Hugs... hope you can get all resolved by today or Tuesday! :ghug:
 
Hopefully, it will be straightened out by Monday. I just wish it would've all gone sooner because I know in C's head it is just this ongoing hassle that adds to the teen mentality of whatev, w or w/o I'm great. Teenage invincibility...ahhh the joy.
 

DustyKat

Super Moderator
They say life wasn’t meant to be easy but sheesh it shouldn’t be so fecking hard either!

I hope it will be all straightened out by Monday too Clash! :ghug: And all goes wonderfully well with the Humira. Sending tons of luck your way…:goodluck:

Dusty. xxx
 
So frustrating! Really hope it gets sorted soon. I will be following your updates as J is moving from 6mp (only managed 3 weeks!) to Humira in the next couple of weeks.
 
The pharmacy called and said the starter kit was sent to the GI office per GI. This is odd because I asked the GI nurse about doing it there due to C's reaction(although it was probably due to antibodies) and the GI said there shouldn't be an issue, now this. I have a call into GI now.
 
Yep, it's settled. Starter kit hadn't been sent to GI, GI nurse straightened it out and kit is on its way. Nurse is coming Sunday to do the first loading doses.
 

Tesscorm

Moderator
Staff member
Great to hear! Bet you can't wait for Sunday and actually see it done and over!

Lots of wishes that all goes well! :D
 

Maya142

Moderator
Staff member
Fingers crossed that it will all go smoothly :ghug:

Just a head's up, M was very tired the day after the loading dose (4 shots for her too). I think she missed school. She wasn't tired at all once we got to the maintenance dose, I think it was just the four shots at the same time.
 
Its weird, I'm ready and not so ready. I know once things are established I'll be fine but just the thought of here we go again, "let this be the one" blah blah blah wears me down.
 
Yes, that roller coaster of hope is exhausting.

I second what Maya said. Loading doses seemed really exhausting and stressful. But I was surprised at how easy it was when we got to maintenance.

Hope you end up wondering why you were worried!
 
He is working every evening after school except Tuesday and never works on Sunday. He is doing mtx injections on Tuesdays so we chose Sunday for Humira.

I be tried to inform him he may be tired but you know teens!
 
Glad he will finally get it on Sunday. Hopefully all goes smoothly and it will be his miracle. I know exactly what you mean about the hope being exhausting!
 

DustyKat

Super Moderator
Sending much luck and fingers crossed that all goes well on Sunday! :goodluck:

Onwards and Upwards!

Dusty. xxx
 

crohnsinct

Well-known member
Oh man Clash! Who could blame you for feeling this way. Look at all you have been through and every time all the hope and waiting etc. :hug:

Praying this is it for him!
 

Tesscorm

Moderator
Staff member
Yes, can certainly understand. It is wearing when there's a constant worry/question... even when it's not a 'major' worry, just constantly having that nagging worry wears you down. I hope this is the last time you have to go through the 'new med' for a long, long time! :ghug:

And that you're soon enjoying a cool glass of wine, on a sunny, warm patio (the thing of my dreams!!) without a single worry!! :hug: :hug:
 
Well that was kinda horrible to watch!

The nurse did the first shot, I could tell it was painful. He gave him self the other three.

He did well but I'm glad that is over with, now to two Sunday after next then on to one every other Sunday.
 

DustyKat

Super Moderator
*Hugs* Clash. :hug:

Well done C for pushing through the pain and doing the shots yourself! :medal1:

I hope Humira works wonderfully well for your lad Clash and roll on every other Sunday!

Dusty. xxx
 

Maya142

Moderator
Staff member
Way to go C:dusty:! Hopefully, it'll get easier. The first loading dose was by far the hardest for M (she said after that, just injecting one shot was not so bad).
 
He didn't have much to say about it and I didn't push.

The nurse said she covered the northern half of our state as the pediatric humira training nurse. When we explained the drive we were making for remicade she was surprised. She said she had several pediatric remicade home health nurses in her office and wondered why we weren't offered at home infusions.
 

Tesscorm

Moderator
Staff member
Glad it went relatively well but hugs to you... heartbreaking to see your child go through something tough/painful. :ghug: Am hoping this works for him and that future shots get easier.

Did you ever ask about having lidocaine added? Just to lessen the pain?

Anyway, just glad it's over too! :ghug:
 
Tesscorm he's not having the syringe shot he is using the injector pen so can't add lidocaine. He waffles on which type but in the end chose the injector pen.

Not sure how Humira affected him since the night before he stayed over at friends and they stayed up real late. So not sure if the shots or the night before activities had him sleeping yesterday.
 
Glad to hear it went well yesterday!
They don't allow home infusions of remicade from what we were told due to the high incidence of reactions to the meds. That is probably why they weren't offered.
Will be praying that it works great for him!
 
Kimmidwife, this home health nurse was pediatric, her co-workers too. She just does the humira training but the remicade home health nurses do the infusions for pediatric patients in their home. She said she found that most are located in the larger city. She also mentioned that they carry more equipment to appts like epi pens and such. So it is an option for pediatric patients as that is all this home healthcare agency dealt with.
 
Glad he got through it Clash. I don't know if it happens to everyone, but H has an immediate space-out after the injection. Like she got hit on the head with a hammer. We ran into her doctor and the tears were wet on her face still - he asked, "Did you just get your shot" She said, "No". It's like a little mini amnesia. One time she couldn't remember her last name right after. If that happens to your son at all it may be why he wasn't into talking right after the injections.

LOL, nothing stops the social life of a teen. I'm thinking sleeping all day could be pretty normal (we have teen boys, too).

I hope he feels progressively better and that it works for a good long while.
 

Maya142

Moderator
Staff member
M wouldn't talk either but that's her reaction to pain - she goes inwards.

If we were to do Humira again, I would definitely explore the syringe and lidocaine option even though M is 18. Her rheumatologist always calls Humira "an absolutely brutal shot." The health center in most colleges will do the shots for them if they don't want to.

Hope Humira starts working its magic SOON!
 
The thing I do like about the pens is that they are ready to go. I wonder with preparing the syringe if it might lead to less compliance away at college.

It's almost like anything that takes time or process is way more than C is willing to do on a regular basis. I think the preparation of formula/pump/refill formula bag/time consumption is why C won't go back to ng feeds. Ha if he only knew the monotonous, time consuming tasks, he will face once he out on his own in everyday life! But, honestly, its like his mentality is I don't want to slow down to do that.
 

Tesscorm

Moderator
Staff member
S is EXACTLY the same way. Very frustrating sometimes! When C goes away to school, don't even waste your breath explaining about separating the colours from the whites... S just throws everything in the same load! :lol: And, then, rolls his eyes at me and says 'my laundry always turns out fine'... :yfaint:

---(from my other thread) I convinced S to skip that afternoon class before his scope but, I think what convinced him was that, if he attended the class, he'd have to start the prep on his own... I think it was right about then that he said, 'uh, yeah, I'll just come home and do the prep' (translation - 'I'll come home so you can just hand me the glass and tell me what, when to drink' :)

Oh well, I guess it's fair... I always remind myself he (all our kids) have to deal with lots of stuff others don't so... maybe they deserve the odd free card. :)
 

crohnsinct

Well-known member
S is EXACTLY the same way. Very frustrating sometimes! When C goes away to school, don't even waste your breath explaining about separating the colours from the whites... S just throws everything in the same load! :lol: And, then, rolls his eyes at me and says 'my laundry always turns out fine'... :yfaint:
I have heard about people who separate their laundry...I thought they were a myth! So there is something to that rule? I honestly only do it if I am using bleach.

I am the exact same way as C and S...too many steps and I will bail! :drink:
 

Maya142

Moderator
Staff member
Clash - a nurse at the health center would be able to mix the lidocaine and Humira. We actually explored that for my older daughter but she ultimately decided that she didn't want to see the needle and would rather deal with the pain.

At her college, if Humira is being shipped to the health center, the nurses there actually HAVE to administer the shot (I think it's a liability thing?). It took a LOT of arguing plus several notes from her rheumatologist saying that she could do it by herself. Since it has to be kept cold, we didn't want it to go to the student mailroom because who knows how long it would take them to process it.

My daughter definitely does not separate her whites and colors -- not just a boy thing :lol:!
 

my little penguin

Moderator
Staff member
Not that I know DS has used lidocaine for over a year with humira
The difference in pain from injections was dramatic
No issues to date
 
Onto Humira... Sorry he built up the antibodies. Good plan to have someone with him in case he had an allergic reaction. D did her Humira booster at the hospital clinic which gave us peace of mind given her reactions. I am glad the pens are working out. We went with the syringe, but after using the pens with the Simponi, I get how much easier they are if our kid is administering the drug. Crossing fingers things work well on Humira!
 
So the GI has upped C's mtx to 20mg equivalent in shot form. So .8 or .08 ml I can never remember. Today was the first dose. This is in response to his wrist pain. We are fairly positive it is his JSpA. His new rheumatologist appt. isn't until April but we are trying hard to get him in sooner.
 

Maya142

Moderator
Staff member
Clash, if you do get in to see the rheumatologist soon, you could ask about a steroid shot. M had horrible knee pain when she was diagnosed and her knee was very swollen. They aspirated it and injected it with a steroid and she was free of knee pain for more than a year!

It's not something they will do often (she's never had another steroid shot in her knee for example) but when joints are very bad, rheumatologists often inject them. She didn't have to be sedated for the injection and it wasn't too bad, even though she was 13 then.

I hope the MTX works wonders and the Humira kicks in soon.
 
So C spent the night off last night and got home before we awoke. I noticed his shots for today had been used so I woke him up to ask about. He said I went ahead and popped the shots and I took pics just in case you thought I was trying to pull one over on you! Bwahaha!

So loading dose two done and on to maintenance.
 

Maya142

Moderator
Staff member
:rof: he took pictures!!

Way to go C for doing them all by himself! That's impressive, especially on the second dose!
 

crohnsinct

Well-known member
What a good boy and a hysterical post.

A) He not only left the shots there all used up but took pictures
and
B) You woke him up to ask him about it! HAHAHAHA Couldn't wait until he woke up on his own. Had to know right then and there! That is SO something I would do!
 
Haha yep bit of evil genius on my part since he IS a teenager and probably up to teen antics on a night away I feel it is my duty to roust him out of bed bright and early!
 
No, no, no! C doesn't deserve all the praise.....



it's his mother that taught him to take a picture,
so he'd have proof that he did the shot!!!:ylol:

That takes years of training. Good for you mom.
 

Maya142

Moderator
Staff member
I think C knows his mom a little too well ;)
Of course now that he's set a precedent, you can demand pictures of him doing his shots when he's away at college!
 
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