Extreme pain at Humira injection site, any advice?

[BillieBling]

Hello there,
This is my first post so if I mess up the proper procedure, I apologize in advance. I am gathering info at my sister's request about her awesome little guy who is being treated 2x monthly with Humira injections. He is 8 yrs old almost 9 and he has been on Humira for 2 years with great, really great results. Recently his dose was raised due to severe diarrhea and weight loss. The nurse came to the house this week and gave him his new higher dose injection to his thigh. It always burns a bit but this week he was screaming and crying in pain, it took 2 adults to hold him still so the nurse could finish the injection. He was also in pain for some time afterwards and said "he would rather die than face that painful injection again. Afterwards the poor nurse was crying (she has been treating him for 2 years) parents were crying ( no one cried in front of him). We were consoling him elsewhere. To give you an idea of this little guy's pain threshold, he has never once cried over the pain of the disease or anything related to the treatment of it. His doctors are always amazed by how well he tolerates any kind of discomfort. The nurse changes thighs and injection site every time. The previous shot, 2 weeks earlier was more painful than usual but nothing like this off the charts pain.
As you can imagine we are desperate for any info we can get. If you can think of anything that might help we would be deeply great full for any advice. Thank so much for taking the time to read my post!!!!!

 

[Maya142]

I'm going to tag my little penguin - she has a son around that age and has had a lot of success with adding Lidocaine to the shot.

Did he switch from the syringe to the pen? Some people say that the pen is more painful because you can't control the rate of the injection, and so it burns more. My daughters never actually tried the syringe, but I've heard it makes a difference.

What helped was icing for 20 minutes before the shot AND after the shot. It always did hurt for my daughters, but over time they got used to it and got better at dealing with it. We also did the shot while they were watching TV in an effort to distract them. We also gave them some sort of treat after the shots - chocolate, ice cream etc.

It's quite a painful shot, your poor little boy. My older daughter is now 21 and still on Humira and still says she hates injection day. Humira does really work like magic for her though.

Hang in there!

 

[my little penguin]

Few things DS is -- 11 and has been on humira for over two years.
His rheumo told us a few secrets
One always do Elma cream.
The kiddo has enough pain no reason to make it worse when you can numb the pain of the pinch.
2. Leave the syringe out for 20 minutes to get to room temp
3. Doc wrote a script for lidocaine - so I add lidocaine to the humira syringe . It. Lessens the burn
4 let the kid be in control . Let him pick where to get the shot , favorite movie to watch , things to squeeze during the shot
5 either let him push the plunger or have him place his thumb over the adults thumb on the plunger.
If he doesn't like this have him tell the nurse when to start and stop so he is in control of the rate of the syringe.
6 have him see a kiddie psychologist who deal with medically complicated kids to come up with his coping skills.

Holding the kiddo down and taking away his control is the worst thing
We watched this at the ER for DS and an iv
After that he panicked for iv s never had an issue before that .
Finally the rheumo helped with this last ER visit and talked DS through it
Picking the spot of the iv /emla cream and distraction techniques so DS could focus instead of panic
No extra holding needed
It's all about letting the kid control the pain as much as possible
Good luck

 

[lookame]

I am on humira so this is what helps me.

-husband does the shot (if I do it I ease up/let go on the pen
-attempt to distract him with something
-let the pen sit out for half an hr to warm up
-ice the area for awhile before and after the shot
-pick a shot area with a lot of fat
-make sure you're not injecting into the muscle (it hurts a lot more if it's injected or hits the muscle)

Mlp also had great tricks about letting him be in control. The next few injections may be difficult with him since he had to be held down so give him back as much control as possible.

 

[BillieBling]

Oh wow thank you thank you!!!!!!!! You all have given me some amazing adviice. I feel confident that employing all of these ideas will be a game changer for the little guy. I agree 100% He needs to get back his control over the situation. What happened is that he started screaming and moving around while the needle was still in his leg, half the Humira having already been injected. The nurse lost control of the syringe and let go, that's why my sister and her husband held his leg down so the nurse could get hold of the needle again and finish it. In retrospect holding him down was a terrible idea but everyone was just caught off guard and panicked. It will never go down that way again, I can assure you of that. In the past he has always wanted to watch the needle going in and the Humira entering his leg. I know it sounds odd but this gave him comfort. I was wondering if applying Lidocaine topically to the injection site helps at all or is it just better to add it to the Humira or both? We really want to set this next injection up right, because it could be crucial to how he feels about getting them. He's been able to make a connection between getting the shots and how he feels physically. This is what has enabled him to deal with the pain of the injection in the past. So fingers crossed he will make that connection again. So far so good, the new higher dose has stopped his 3 hrs a day on the toilet diarrhea, big time. So there is that gem to hold on to. I am not sure if we have control over the temperature of the Humira itself, ie. leaving it out for a bit to warm up. The nurse comes to the house with the Humira syringe in a special cooler and gives it to him. Should we ask her to leave it out for a while? I have a bad feeling she may be legally unable to grant that request.
That aside you all have generously given us so much to work with so my awesome nephew can take back the experience of healing himself with these injections. I will let you know about the plan he and the family come up with so you can tip us off if you see anything that might be a problem.

YOU ALL ARE AWESOME MANY THANKS!!!!!!!!!!!

 

[my little penguin]

Topical creams like emla cream only numb the surface so the kid doesn't feel the pinch
The lidocaine actually needs added to the humira syringe ( prescription from DS doc to do so ) this lowers the ph of the med and it burns less .

Is there a reason his folks aren't giving the drug?
I have heard of kids getting it at the peds office but never a nurse at the house .
We were told we had to learn to give it at home period .

Good luck

 

[BillieBling]

That's interesting that you do it yourself. That makes sense to me because eventually he will have to learn to give it himself. We live in Canada, I don't know if anyone else here is in Canada or not. As far as I know my sister wasn't given any other option but to have the nurse come to the house and get it by syringe not pen. I don't know if it is an insurance thing because the drug is so expensive and they want to make sure the correct person is in fact receiving it. It really sounds like adding some Lidocaine is the way to go. I passed the info on to my sister tonight, so fingers crossed she can get a script for it to be add to the Humira. My nephew is a very smart little guy and I feel sure he will like the idea of it being added to the mix.

MANY THANKS!!!!!! It is so very scary sad heartbreaking when a child is in such severe pain. His Auntie (that's me) is giving him a prize ( that he will love) right after the next shot. He digs gifts big time ( what kid or adult for that matter doesn't) so I am hoping the anticipation of that will help things along too. I wish you and your loved ones excellent health!!!!!

 

[Maya142]

I'll tag SupportiveMom, her daughter was on Humira and is at Sick Kids. Maybe she can help.

Most parents learn how to give the shots - even with the syringe. Older kids often give the shots to themselves - either with the pen or the syringe (my girls preferred the pen because they didn't have to see the needle). Maybe it has to do with study?

Hope you can get the lidocaine soon!

 

[BillieBling]

That would be great!!!! Thank you. He's 8 almost 9, that's probably old enough to give your own shot. His Dad gives himself insulin injections daily so he wouldn't be freaked out about doing it himself, possibly.

I so appreciate your quick reply, take care Maya142. It helps so much to hear from other people.

 

[my little penguin]

Keep in mind we tried to let DS ( age 11) just push the syringe in but when he tried he said it hurt too much and couldn't do it.

But I do know of little kids who prefer to do it themselves .
Good luck

 

[Maya142]

My girls started doing it themselves at 14-15, but that said, I know of one 10 year old who gives himself his shots. I also know older kids (20, 21 years old) who think it's too painful and prefer when someone else gives it. It really depends on the kid.

 

[BillieBling]

I think we are going to have to get creative with how to give him back his power over the situation after it went south so badly. In spite of the pain, he is very active and athletic. That together with the fact that he has had difficulty gaining weight means that he has very little body fat so maybe the nurse or his Dad who is used to giving himself injections will have to do it for now. Can Humira cure this disease or is it an ongoing thing? It seems like most of the kids mentioned in this forum have gone on to take it in adulthood. I wish it wasn't so shockingly expensive. I ask because I guess we will have to always make sure he is covered somehow. Take care all!!!!!! And again thank you.

 

[crohnsinct]

Sorry but at the moment there is no cure for the disease.

We do what we can to manage it, get it to remission and keep it there.

Yes, the kids typically stay on the drugs until they stop working and then just move along to the next drug. Especially the biologics (Humira is one of them). The risk in stopping and coming back to the drug at a later date is that the body can develop antibodies to the drug and then when you try to reintroduce it, it won't work. Now, some have been successful with a reintroduction but it certainly isn't the norm.

There are lots of new drugs in the pipeline so my hope is the kids don't run through the drugs faster than new ones can be developed.

Your nephew is a very lucky boy to have an aunt who loves him so much!

Lots of good luck wishes coming your way for the next Humira shot!

 

[SupportiveMom]

Sorry I am late to the thread! Busy week in Toronto with those with IBD! I wish I saw this earlier. We had our Crohns & Colitis Canada Toronto Social Group meeting last night. There were a few parents there too, and some teens. Our next meeting is May 17. message me & I can give you details if you are interested. It is a great place to talk with others that have it, or support people with it like sisters, parents, & friends.

My kid is treated at SickKids. D has been on Humira and opted for the syringe when she was on it. YOU do have the option of pen versus syringe. The cost is no more than the other. Progress, a division of Abbvie that does patient support can assist in that switch. A progress rep would have contacted your sister setting up insurance, the nurse, etc. It is no big deal to switch. It sounds like the nurse didn't have a pen to teach you on or someone didn't inform the nurse you wanted it. If you need help with that switch I can probably point you in the right direction. Who is your nephew's nurse?

D was 12-13 when she was on Humira and would sit still probably a bit better than a 9 yr old. She still screamed and she was used to injections from Methotrexate. MLP & others gave some great tips to help, and they do, but D still screamed at every shot until she went off it last summer & moved to Simponi. Some kids do find a way of adjusting to Humira. It is very rare once you go onto a biologic like Humira you ever go off. It will talk a lot of convincing him but his stress levels at the shot makes the pain worse. We used to watch a favorite TV show before the needle to relax a bit.

Feel free to ask anything else either here or PM. I will do my best to help.

 

[SupportiveMom]

Sorry June 17 is the next meeting!

 

[Pilgrim]

Hi! I'm sorry I missed seeing this too. I don't have a lot to add. Our daughter is 4 and she's been on Humira injections for 5 months. In general, something I noticed about her, is that her pain tolerance decreases during a flare and especially if she is anemic. We had a time when she kicked people who were drawing her blood, but she's not "that" kind of kid usually.

Once her anemia was dealt with she had more pain tolerance. Could be a coincidence. Maybe it's possible he hurts more right now because he's been doing so poorly lately?

We are in Canada too, but there is no Humira nurse in our area, so we're able to have the nurses at our local GP's office do the shot. Psychologically, I actually think it's easier than at home. She doesn't get fussed over (well, they love her so maybe a little) but there would be more sympathy and delay at home. So we go in wait our turn and then it's done in less than 2 minutes. I give her a lollipop to suck on as they prep the syringe. She usually lets out a quick cry as the med goes into her. It's obvious it hurts, but it's only an issue for a minute. Then we get on with our day.

ETA: it's hard not to cry as the grownup! I did at the beginning, but not so she could see.

 

[Tesscorm]

Another idea... when my son was much younger, he had an injury and had to have fluid extracted from his knee. From what I was told (and from how I saw him react), it is quite painful. What I did was tell him to count backwards from a random number, ie 57, in multiples of 3 during the procedure. For his age, this was tough enough that it forced him to focus on the task and, when the pain would become too strong, I'd count out loud with him and bring his focus back to the counting. It actually worked quite well and he asked me to do the counting with him again when he had to do another procedure.

:ghug:

 

[BillieBling]

Oops I keep loosing my posts. I'm such a newbie!!!! I have replied to supportive mom and others to thank you, at least I thought I did, nothing seems to be showing up on this page. Just in case you did not get my replies, I really want you to know how much you have helped. unfortunately my sister lives 2 1/2 hours away from Toronto (I live in Toronto though). So my brother-in-law brings my brave little nephew to all his tests, ct's and appointments. It also means that they have not been able to take advantage of the supportive help that was available. My sister especially feels so helpless and terrified. Which is why I collect the info on her behalf because in the past when she has done research, she ends up getting even more frightened and depressed. It seems to work better with me reporting to her all the important parts then she follows up with the docs anything that needs more explaining.

It was oddly reassuring to know tha this shot is painful in general. That he hadn't all of a sudden got a freak batch or something like that. His next shot is this Friday. A plan is in place, thanks to you guys. I will let you know how it goes.

It helps so much when you know that you're not crying alone and knowledge helps heal the helplessness. I am many years older than my 'little' sis, I love her like a daughter, a best friend and of course a sister. Her son, my nephew means the world to me. The kindness you have all shown has dried a lot of tears and calmed a lot of frayed nerves. Bless your beautiful hearts all!!!!