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Posted 5/13/2008 4:11 PM (GMT 0)
Good morning.  My Daughter who is 10 years old (dx @ 3 years old) is suppose to start Humira today.  We've tried it all, last resort here.  Without all the other, painful details I'm wondering if perhaps someone might have a trick for the pain of the actual drug going into the tissue.  I've heard it burns for about 2+ minutes.  My daughter has had an abundance of bad experience with injections and side effects and after a year of putting this off and giving every other option a fighting chance, well I just want to make this less horrible for my sweetie.  Apparently, she will have 4 back to back injections today (mom, why can't they just put all the medication in one syringe), ..... thanks for your input.  Demery
Posted 5/13/2008 4:16 PM (GMT 0)
Make sure it's at room temp. The colder the med is the more it stings. Also, I always found it less "stingy" if I took a shower or bath first. That could have been all in my mind, but it seemed like the tissue hurt less during the shot.

I think it might hurt more to have it all in one syringe, but I feel for you! I cannot imagine having to give my 10-year-old those injections, knowing how they feel. But, the worst of the sting is during the injection.

Good luck!
Posted 5/13/2008 4:22 PM (GMT 0)

WOW...she has had CD for 7 years?  I will pray for her...I can only imagine what she (and you) are going through. I have been on Humira for about 6 months, I usually take my syringe out of the fridge for about 1/2 hour before I inject, it doesn't sting as bad.  Question, how was your daughter diagnosed? My daughter is 7 years old now, and she has complained about belly aches off and on for at least 2 years now. I took her to see a GI doctor, who put her on previcid, but didn't do any testing.  Not sure of the next step, do I demand further testing?

thanks for listening, kelly

Posted 5/13/2008 4:23 PM (GMT 0)

Thank you!  I'll make sure it's room temp!  Demery

Posted 5/13/2008 4:28 PM (GMT 0)

Hi Kelly,  Olivia never had a solid stool.  The doctors said it was because I was breast feeding.  At 2 1/2 she started having blood in stool.  the doctors said she probably had fissures.  Two months later I gave up on her pediatricians and took to a GI doc who immediately did a colonoscopy.  She bled so badly she had to stay and have a transfusion - oh the stories I could tell. 

Posted 5/13/2008 4:32 PM (GMT 0)
Also kelly, I think the diarrhea is/was the biggest indicator but certainly, I would have a pediatric GI doctor look at her rather than a general doc. If you contact CCFA.org they could help you find a GI doc for kids in your area. Demery
Posted 5/13/2008 6:16 PM (GMT 0)
Hi. I called Abbott and my GI and both said it was ok for me to take two shots one day and two the next when I started the Humira. It was very helpful as the liquid does sting. I have found that if I let it sit out for a while (room temp) and ice the crap out of the injection area (and by “the crap out of” I mean holding the ice there for 45 min or so til it’s completely numb) and pinch the skin very firmly (so much that the pinching hurts a bit) then it doesn’t sting as bad.
Unfortunately, however, I think it’s just something she’s going to have to deal with as I personally have not found anything to make it not hurt at all. Just be sure she’s relaxed (I usually do it laying on my back on the floor) and breathes (even though she knows the pain is coming) and does her best not to jump at the clicking noise or the injection itself. Reassure her that it’s very quick and that if the Humira works she will feel loads better and it will be worth it. Good luck!
Posted 5/13/2008 6:18 PM (GMT 0)
Demery - I can't imagine how painful it is for you to see your daughter go thru this. I have used Humira a little over a year now - room temp, ice injection site and maybe if you could distract her while doing it. I know my son had to have a tetnus shot when he was 8 after a third degree burn and the doctor asked him to think of his favorite thing and tell him what it was - while my son was thinking the doctor never warned him and just gave him the shot. The humira burns for about 15-30 seconds but I feel the worst part is the anticipation of the injection. The first four were tough - in the beginning I thought it hurt less in the stomach - now I do it in the leg. Good luck to both your daughter and you.
Posted 5/13/2008 7:22 PM (GMT 0)

Ditto on the room temp,and ice the injection site for at least 20 minutes,that helps me alot. I feel so bad for her,I'm 40,and I get anxious before my shot.

Good luck :-)

Posted 5/13/2008 9:17 PM (GMT 0)
You are all fabulous. I've never really been able to talk to anyone like this before. Even though its just writing back and forth, it does help. My chest feels so tight, I can barely breathe. Olivia is so scared. I keep telling her that maybe if she can get through these injections for a month she'll feel much better and realize the brief (well, in the scheme of things) pain of the weekly injection will be worth it. Maybe I'll finally be able to wean her off the prednisone. I'm going to try numbing her skin like I do for her IV's with LMX creme, as well I think adding ice to the mix as some of you have mentioned for the last 15 or 20 minutes before the injection will be the helpful. The doctors wanted to give her some versed or valium for this first time but I reminded them she gets combative when she gets confused and suggested N2O (gas). They are hesitant, don't know why except that it's not as convenient for them to administer as we'd have to go to another part of the hospital - lazy ******s - oooooops, did I say that! I'm so sorry that you all have this painful disease and I pray all the time for an easier more helpful medication or perhaps even a cure. I'm speaking on a panel at the end of this month that attracts docs from all over the country. The forum is autoimmune diseases and I'm hoping to learn about some new possibilities for my daughter and all of you!!!! Again thank you so much for your support. Only the people closest to the victims really know how much you all suffer.
Posted 5/13/2008 9:22 PM (GMT 0)
demery,
I never found that it stung for 2 minutes. I would hold the pen in for the count of 10. By the time I reached 10, the sting was gone. I hope it wont be too painful for your daughter. I'm sure it will be painful for you!
Moodindigo
Posted 5/13/2008 9:25 PM (GMT 0)
I'll tell her that. She's getting dressed to leave for the hospital and I'm trying as hard as I can not to cry in front of her!
Posted 5/13/2008 9:40 PM (GMT 0)
One more detail RE: taking humira. and i didn't learn this until i was 100 weeks in: After you swab the area that is going to get the injection, WAIT FOR IT TO DRY! If you are like me and you just rush, the needle catches the un-dry alcohol and that creates the stinging. I wish i'd thought about this in advance!!!! it will hurt not hardly at all if you wait for the alcohol to dry!

J
Posted 5/13/2008 10:50 PM (GMT 0)
I'm glad others also said less than 2 minutes. My first thought was more like 30 seconds. Hopefully that will help her to know she won't be stinging for 2 minutes after each shot! And, yes, once she gets to every other week single shots, she will be happy to be on it and feeling better! Poor thing!
Posted 5/15/2008 11:55 AM (GMT 0)
Demery, thanks for responding, my daughter does not have D, she has solid BM, its just the belly pain that I worry about. I never had D either, I was usually constipated. I guess we will see what happens at the next doctor appt.. thanks again
Posted 5/15/2008 2:44 PM (GMT 0)
of course, I'm sure this disease has different ways of causing gi distress. I'll write later about the monster doc appt of tuesday - the 4 shots of humira - what a nightmare...................but, she got the injections and maybe they'll work for her! demery
Posted 5/15/2008 7:49 PM (GMT 0)
Hi,
I just started the Humira last week, I did some research on my own before the first injections so I knew what to expect. Yes it was hard to give myself four back to back injections, but I compare that to the IV I got during my time with Remicaid and it seems better so far, have to wait and see. I used the pen for the Humira as I just don't like the sight of needles, the pen hides it. The only thing that seemed odd was the loud click they warned about, it was not that bad as they said, good luck.
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