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09-08-2016, 01:08 AM   #1
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Humira Pain

As I posted last month, my daughter was switched from Remicade to Humira due to antibodies. She has finished her loading dose and will be taking her first single dose today.


We have actually had to hold her down to give her some of the injections. And that's a feat. She's not small and she's very strong(she's 13, 5' 1" and 140 lbs). She screams in pain and it just tears me up.


We've tried icing, we've tried heat. Always leaving the pen out for several hours so that it's room temperature. She's gotten better, usually only fighting a little before resting in her daddy's arms while I give the injection. Problem is she works herself completely up before the injection. So much so that she has actually puked and blacked out (this actually happened at her first injection in the presence of our gi nurse). She cries and begs me to ask the doctor of another way. I've told her our choices are limited. As we have already tried Imuran and Remicade. She's even told me that she wants to stop all medication. Which, of course, is not an option. When she didn't even have a reaction to the Remicade but just built antibodies to it her body immediately started the flare process. She NEEDS these meds!!!


I know that the medicine is painful, I've read it here and the fact that she would rather have an iv ran for Remicade confirms it. We've been told by several that the syringe is much better because you can slowly inject it and it doesn't cause near the pain that the pen does, but she is more terrified of [me] using the needle on her. (Not quite sure why she's so nervous about me doing these things, Lord knows I could probably run her iv after what we've been through the last year lol)


I am just at my witts end. I hate that she is in so much pain with these injections but there's not much I can do. I know the new formula will be out soon, however it won't be soon enough. Thank you for listening to this mother's venting.
09-08-2016, 04:47 AM   #2
my little penguin
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She needs to see a psychologist ( not psychiatrist ) who deals with medically complicated kiddos
Physically restraining her is not going to help only make it worse
Ds used to scream
We use the syringe so we can add lidocaine to the humira which reduces the "sting"
It's similar to a wasp sting by the way so not an easy thing to mentally prepare for but only lasts about 10 seconds .

We were told that crying screaming makes the pain worse
Tightening of muscles when she is being restrained will make the pain far worse
Hence the need for psychologist

We used one for Ds
He went from screaming a blood curling screaming to talking

We ask him questions that he has to think hard about the answers
This reduces /blocks the amount of pain
We add lidocaine to the syringe this lowers the pain
We allow him to have control this lowers the pain
He gets to pick where ( location in the house) things to squeeze ( the happy pill stuffed animal helps/squeezy balls)
He gets to draw up the lidocaine or add it to the humira syringe
Some kids need to place their thumb on the syringe ( pen button and push it )
Some only like the thigh not the stomach
Some do better if they do it themselves

Psych discussed with Lp ( not us) why he does meds
Why he can handle it for 10 seconds
Counting helps
It's not easy
No negotiating just matter of fact that it will be done
Heavy rewards after
Picking movies favorite food etc.,,,

But honestly until he saw psych I dread shot day and all other family members left the room because it was too hard to watch
Now he gets it every 5 days and we chat

Gi dept should have a kiddie psych in their dept for you

That combined with lidocaine makes a huge difference
They make a freezy spray which numbs the leg but doesn't stop the burn
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09-08-2016, 06:07 AM   #3
my little penguin
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Oh and some kids do better if they give themself the shot
Weird I know
She can be taught
The pen has a loud click which is hard for most adults to hear and the spring can cause a bruise
Using new syringes ( empty ) on oranges to practice ) can help her
09-08-2016, 08:20 AM   #4
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Thank you for the reply. We have always encouraged letting her give them, she refuses. She gets rewarded and also gets to pick where the injections go and where in the house is comfortable for her. I only ever gave her one shot while having to be completely restrained, it went TERRIBLE. After that she realized just how harmful that was (her muscle was tensed and the needle nicked her at a crazy angle causing her to bleed and half the medicine shot across the floor, the pain was unbearable also). Usually, though, the whole encounter starts off with her being subdued, then after several minutes of talking she backs down and cuddles with her daddy(Which she HAS to do, makes her feel better). It's just traumatic all the way around.


Anyway, we gave it to her a little while ago and to my surprise it went very well. She did work herself up before and was nauseated from that, but she only cried for a minute or two, telling me again how she was scared. After that she held her daddy's hand and I made sure she could see the window and she was fine. We all watch the window and count together. I just feel bad that it hurts so. See it does sting for the 10 seconds but for her she goes through the roof when I even lightly apply a bandaid afterward and it hurts her some for the next several hours if it gets bumped.


I'm just glad to see how smoothly it went for her today. I do appreciate your recommendations though and will certainly keep that in mind.
09-08-2016, 08:36 AM   #5
my little penguin
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Oh we do the injection right before bed
No moving and no bandaids even if he is bleeding
That muscle gets very sore ( think tetanus shot per Ds)
Sometimes he wants a heating pad on
Most are afraid so putting their thumb on top of yours does help some

I didn't think psych would make a difference
But they came up with a plan
Discussed it
And it was like night and day after a year of screaming /crying /getting worked up
Now I just get "owww"
And "don't touch the shot spot afterwards please"
09-08-2016, 12:21 PM   #6
Sascot
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It's so hard to watch them in pain! I'm not sure if it's available where you are but recently I have been reading on the UK adult forum that a new Humira pen has just started being used that is so much less painful. Quite a few people have been commenting how much better the new pen is and what a relief to not have as much pain. Worth asking about anything similar where you are
09-08-2016, 12:36 PM   #7
Maya142
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There will be a new Humira formulation soon. It's already in Europe, but it will make its way to the US. So hang in there!!

The pen is very painful. My 22 year old just switched to the syringe and says it's MUCH better. She has been giving herself the shots for years and says she wishes she had used the syringe all along.

My younger kiddo is on a different biologic (which is much less painful) but just started giving herself the shot. To her surprise, she found it less painful! She can't decide if I'm just bad at injecting or it's being in control that helps . She is away at school now, so being able to give herself the shot helps.

We used ice and had the girls watch TV, so that they were distracted. Also asked questions -- open ended ones are best. They would tense up each time but eventually figured out that if they were tense it hurt more. We iced before and after the shot and found that helpful.

They also had a treat (dessert) after the shot and picked a bandaid (had to be colorful, no boring bandaids!). But if a bandaid hurts her, there is no need to use it.

They also both complained of the shot being painful afterward for a couple hours. It did help if they were distracted. So if they went right back to watching a movie after the shot, then they did not pay attention to the pain.

We also have seen a psychologist and that really REALLY helped. I definitely recommend one, but you need one that works with kids with chronic illnesses.

She has to learn to cope with the shot, because unfortunately, there are not many good options. Counting helped us too and pointing out that 10 seconds of pain (and it is BAD pain) is better than being sick 24/7. Once my girls worked that out, they stopped arguing.

We have tried freezy spray and Lidocaine patches and haven't had much luck with them, unfortunately. For us, ice worked best and we iced till their legs were "practically frozen."

Good luck!! It will get better!
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-08-2016, 12:48 PM   #8
Tesscorm
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Not with humira but, when my son was around 9 years old??, he had to have fluid extracted from his knee (apparently, quite painful) and the questions/distraction helped. At the time, I asked him to start counting backwards from some random number like 57 but count in multiples of 3s. It was tough enough that it kept him focused while the dr extracted. When the pain would increase, I'd get him back on track with the counting. It helped enough that when he had to have it done again, he asked me to do 'that counting thing' with him again.

But, I'm sorry your daughter needs to go through this... even harder when they have to accept that it's not a one-time event.
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July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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09-09-2016, 10:18 AM   #9
polly13
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Yes I am also promised that the new version Humira is coming and it is not as painful and lucy is looking forward to it. I think for us with Lucy it was easier because she was so young when she started it - she was only 4 so I think she accepted it quicker than the older kids do. She is 8 now and it is still going pretty well, now she will always have a sore throat or something like that if she remembers its humira day!!!!! and have brought her to the doctor on more than one occasion to be told that she is fine - so she doesnt really try it as much anymore. We have no lead up at all, my husband give the injection because I feel faint at the sight of a needle and when I did try to give it to her my arm just wouldnt work and I couldnt - so we hand her the ice pack as the injection is being drawn up, she ices for a few minutes then in and done and no drama. It took a long time to get there though, she spoke with a psychologist also and Ithink once she realised she was getting better she just accepted it. I used to hold her hand and let her squeeze mine but she doesnt even need to do that anymore. It is so difficult to inflict such pain on your child but for us once she realised we were doing it because it was making her better she accepted it. Would second seing a psychologist also.
09-10-2016, 08:49 AM   #10
izzi'smom
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Everyone has given great advice, but I just wanted to comment that the syringe/autoinjector should only be left out for 30 minutes before injecting (unless they've changed recommendations in the last 2 years). Dd and I have both done humira, and I know its not easy. Hang in there.
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09-10-2016, 09:51 AM   #11
Tony H
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Hi Ashley , the only thing that helped with the pain from the pen was listening to loud music using headphones ,that way I don't hear the click and it used to distract from the pain , hope the new pens reach you soon as there is NO PAIN .
Hopefully you can tell her that the new pens are coming soon and it will give her hope .
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09-10-2016, 09:53 AM   #12
Tony H
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Yes I am also promised that the new version Humira is coming and it is not as painful and lucy is looking forward to it. I think for us with Lucy it was easier because she was so young when she started it - she was only 4 so I think she accepted it quicker than the older kids do. She is 8 now and it is still going pretty well, now she will always have a sore throat or something like that if she remembers its humira day!!!!! and have brought her to the doctor on more than one occasion to be told that she is fine - so she doesnt really try it as much anymore. We have no lead up at all, my husband give the injection because I feel faint at the sight of a needle and when I did try to give it to her my arm just wouldnt work and I couldnt - so we hand her the ice pack as the injection is being drawn up, she ices for a few minutes then in and done and no drama. It took a long time to get there though, she spoke with a psychologist also and Ithink once she realised she was getting better she just accepted it. I used to hold her hand and let her squeeze mine but she doesnt even need to do that anymore. It is so difficult to inflict such pain on your child but for us once she realised we were doing it because it was making her better she accepted it. Would second seing a psychologist also.
Hi Polly you should be getting the new pens by now , have a chat with the chemist and insist on them , I have them in Cobh for the last two months .
09-10-2016, 11:46 PM   #13
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Thank you all for your suggestions. She did really good the other night. Hopefully it will get easier from here and the new formula will be here soon. The nurse at the gi said it should be by the end of the year. When I asked the pharmacist at Blue Cross of Alabama(who we have to go through to get it. Some of you may have remembered my previous post about that nonsense) she could only tell me that the new formula had been approved in Europe and that hopefully it would be here(states) soon.


Izzi'smom, now you can leave it at room temperature for up to 14 days. They said it makes traveling easier. I'm glad, simply because 30 minutes does not allow it to warm up long enough.
09-10-2016, 11:54 PM   #14
Maya142
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We heard end of the year too. Fingers and toes are crossed.

Has she tried Buzzy? It doesn't work as well for Humira as it does for other shots, but my older daughter still likes using it. It works best for IVs and blood draws.

https://buzzyhelps.com

If you do decide that syringes might help (they made the biggest difference according to my daughter), then your GI's office can train you to use them. They're not as bad as they seem, I promise. There are videos online.

We also leave Humira out for more than 30 minutes - about an hour.
09-11-2016, 12:12 AM   #15
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Maya, thank you! I've never seen one of those before. I will have to look into it. She's the one that doesn't want the syringe. I've told her that it isn't as bad but it just scares her. She is completely fine with having blood drawn or an iv ran, she just can't stand shots lol. I don't understand it sometimes. But, this is all about her and I don't want to do anything that is uncomfortable (mentally) for her. I really hope that that new formula comes out soon!!!
09-11-2016, 01:01 AM   #16
Maya142
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How about showing her some videos? It's worth a shot .

She could also close her eyes so she does not see it. My girls both resisted the syringe for years because they did not want to see the needle, so I completely understand. But then my older kiddo just decided she was sick of the pain and I told her I had heard good things about it here. It made a big difference.

I also definitely think seeing a psychologist will help. Many GI depts have one that works with kids with chronic illnesses or medically complicated kids. It takes a while but it can make a huge difference.
09-11-2016, 12:05 PM   #17
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Everything that is done she has to watch. When they run an iv or take blood she has to watch. When I do the injection she has to watch me and watch the window to see when it's done. She's just always been that way. Like I said, she did much better this last time so hopefully it will continue this way.
09-15-2016, 09:01 AM   #18
polly13
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Hi Polly you should be getting the new pens by now , have a chat with the chemist and insist on them , I have them in Cobh for the last two months .
Thanks Tony, but Lucy uses syringe as her does doesnt come pre loaded, so I think that is what is the delay as the new formula is not yet available in vials - checked with the pharmacist again yesterday, we are in Crumlin in the next couple of weeks so I am going to ask again there ............ anything to make it easier becuase it is a very difficult injection
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