This is about my granddaughter, not a T1, but about a year ago she was dx’d with a pretty nasty auto-immune condition, the treatment for which requires weekly Humira injections. As her T1 grampa I’ve done my best to talk to her and advise on the various injection methods and locations. But Humira is different from insulin in that you don’t just do the whole dose in one quick squirt, it actually takes something like 10 seconds. And she really hates it. The needle is about the same size as an insulin pen, but the stuff itself burns a bit and the prolonged injection doesn’t help. We were talking about it at her b’day party last night and I was thinking of suggestions—icing the area first, that kind of thing. And it suddenly occurred to me that TUD may be a helpful resource in this regard. So I’m looking for suggestions of techniques or products designed to ease the pain of injections. Anybody have a good solution we could try?
Look for topical anesthetics, like lidocaine, or even ask her doctor for a prescription one. I used one as a kid because I had major needle-phobia.
I was on Humira a few years ago. Even after 30+ years of doing insulin injections, I found the Humira injections pretty unpleasant. I think I used to ice the area before injection and let the Humira warm to room temperature before injecting. Those things helped some.
The other thing I did that helped me more was I requested that my doctor prescribe Humira in a vial plus syringes. That way I could control the rate of pushing the plunger and, if it was more painful than usual, pull out and inject in a different location. I think doctors automatically prescribe the auto-injectors due to convenience and the fact that most people aren’t used to injecting themselves.
Another thought is for her to try the new citrate-free Humira. It is supposed to be less painful, but I don’t have any first or second-hand knowledge.
Hope she can find a good solution!
ETA: I may have received Humira in pre-filled syringes instead of a vial. Either way, the important part for me was that it wasn’t an auto-injector.
I was on Humira and hated it. I couldn’t inject it myself because I would have pulled back on the auto-injector and not gotten the full dose. The burn/pain is awful. I never did find anything that took the burn/pain away. I think what @Edamame.Bean suggested regarding getting it to room temperature is suggested in the packaging too. I never tried to ice the area first; that might help, but you’d have to ice it for a long while to get it cold deep enough to matter.
I’ve seen commercials about this and I surely hope it works. I didn’t think there was an option though, I thought they just changed the formulation to a citrate-free injection.
I was never so happy to change medications as I was to get off of Humira! That’s my suggestion @DrBB … ask if there is something else she can take. Enbrel and Humira used to be interchangeable for several conditions, but not all, so I just read. I was on Enbrel and it did not have the same burn/pain that Humira did, but Enbrel did sting a little.
I don’t know but I’ll pass it along. I think my daughter said Bella is already on the citrate-free version of Humira, but as you say that may not be a total solution. The disease she’s got is an exceedingly rare condition (1 in 3M) called CRMO, for Chronic Recurring Multifocal Osteomyelitis. Immune system attacks your bones, very painful and can lead to long-term debilitating damage. Childrens Hosp. in Boston, where they took her when the docs down on the Cape couldn’t make sense of it, is one of only 3 hospitals worldwide with a center focusing on CRMO, so we’re really lucky to live in the area.
Taking a heavy immunosuppressant while attending elementary school is no treat, given it’s like a daily trip to a big petri dish. So it has been rough. She’s an amazing kid—her nickname even before this was Bella the Brave—and her spirit is strong, but it has been very difficult for them all.
Your comment helps illuminate what it feels like from her perspective—really appreciate that. She’s been good about all the myriad procedures they’ve had to put her through, but the weekly regularity of this makes it more of an ongoing problem.
I know I scratch my skin with a fingernail pretty hard when I start my Omnipod insertion, I have spots that sting a lot and it seems to completely distract me from the sting that momentarily happens when the cannula is inserted. It’s a trick a friend had told me about for pain distraction years ago. So maybe a distraction, but it has to be something that pulls your attention away for the full time of the injection. Something you feel at a different spot.
I wish her the best of health.
Yes, we were talking about that last night—kinda like what dentists do for a novocaine shot. Might could help. The medication itself stinging is a harder problem. I’ve used lidocaine patches for deep muscle pain, so some kind of topical application might be worth a shot, so to speak.
I use prescription lidocaine 2.5%/prilocaine 2.5% when I change my infusion set most of the time. The brand name is EMLA, but I use the generic. you just need a little advance planning, because it takes almost an hour to reach complete numbness (which will remain numb for about 4 hours). You do need a dressing like IV 3000 to hold it in place.
she will not feel a thing if you use this.
How about just numb the area with ice for a bit?
@DrBB I’ll keep your granddaughter in my thoughts and prayers.
How difficult this must be … pain from the disease along with pain from the treatment. She does sound like a trooper and one who befits her nick-name!
It is very lucky for her to be able to be so near to a children’s hospital who specialize in this condition. My prayers will include those who research CRMO, that they make a breakthrough that makes a positive difference in how they are able to treat CRMO.
As for the petri dish … aka elementary school … nothing is truer! It doesn’t get much better as they move to junior and high school. Can she be fitted for a mask? Something similar to this:
https://www.amazon.com/Debrief-Me-Mouth-Cover-Respirator/dp/B076R8HSM2/
or
https://www.amazon.com/Muryobao-Pollution-Respirator-Replacement-Strawberry/dp/B07B7DMDNL/
I was going to suggest this, too. I’ve used this for times when my skin seems super sensitive and infusion sets are hard to insert (seems to be related to monthly hormones, during a certain week my skin is super sensitive and everything hurts). In Canada, this isn’t a prescription item, although maybe there are different strengths.
As far as face masks that @Tapestry mentions, I’ve used these types of masks before for severe allergies. The one I’ve used is called the Cambridge Mask, and it’s advertised as being able to block bacteria and viruses (some of the masks only block pollen and other allergens).
Best of luck to your granddaughter and family.
Getting her to wear it would be the hard part. Have to see if they have Totoro or Pokemon designs!
It’s on the list of things to try, but we think the real pain isn’t the needle piercing the skin but the medication itself.
Humaria used to have a citric acid ingredient and it made the sting just awful. That was removed in late 2019, and if she is getting the new stuff, it should be a lot better. However for children in particular the association is terribly strong and that may never go away.
Assuming Humria is given for an arthritic condition her parents may need to ask if a different medication is available. Enbrel and Remicaide may be two good alternatives.
I like the ‘Bella the Brave’ from Grandpa.
Is there a character from a movie that she likes that has analogous experience?
Like, maybe if she closes her eyes (when she gets the shot), she is a pikachu doing that electrical thing that he does to gain power…maybe you say, ‘electric mouse,’ and she closes her eyes and imagines herself as the pikachu getting fused with electricity.
Maybe she is a new type of Pokemon that gets its power from a special juice that they inject through the syringe. Maybe she AND Grandpa are that same type of special Pokemon. Maybe she can give Grandpa his special shot. Maybe she is the only one with the power to do that, since you are both the same type of Pokemon’s.
The shots give her special powers that no one else has. (We know, as diabetics, that we have certain special powers as a result of our disease, maybe. We just might not totally understand what they are or how to utilize those powers until we are older. But, they are there).
Maybe there’s an analogy in Harry Potter. Maybe medicine is a form of magic and this is all part of her training.
Great suggestions!
ah, Lantus does that to me–it stings. I get your point that numbing wouldn’t help.
EMLA or ElaMax topical lidocaine we use in the hospital for venipunctures, IV starts and injections and port accesses. Usually works really well but does require a prescription.
We also use a Buzzy device. It’s a pain distraction device that I have seen work on a lot of kids!
https://buzzyhelps.com/pages/buzzy
DrBB: I don’t have any experience personally with Humira, but my father had osteomyelitis as a child, bacterial cause rather than autoimmune. But back then (1909) the only treatment was surgery, and my poor father had many surgeries over the years from the time he was 4 until he was 21. While I’m so glad there are medicines to treat it now, I know it is an extremely painful disease, and just wanted to say that your family, and especially your granddaughter, will be in my thoughts.
Ruth
at least these aren’t rabies shots!!