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Starting Humira tomorrow

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Crohn's Disease
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Posted 5/28/2008 6:55 PM (GMT 0)
My son (16 years) will begin humira tomorrow.  Four shots tomorrow and then two next week, then one shot every other week.  He is deciding if he should have them do the shots one at a time, or all at once.  I guess they hurt, so he's thinking all at once might be better.  The nurse said they do it like this a lot, just have four nurses come in and give one in both legs and arms all at once, then put ice on areas quickly.

Not looking forward to it.

 

Posted 5/28/2008 7:09 PM (GMT 0)
Good luck with Humira.
Really all 4 exactly at once?
I'm not so sure he would like that much. I did my loading doses one at a time with the nurse. 2 shots were very easy but the other 2 stung bad. It is sometimes like a crap shoot, not sure what your going to get. I did my loading doses in both legs, was too nervous at that time to try the stomach. However, since tried it and the stomach is not too bad. The more fat the better. I never tried the arm, was just told the legs or stomch.
Once you get through the loading doses, once a week which I'm on now or every other week is not so bad.
Posted 5/28/2008 7:49 PM (GMT 0)
Softball fan, the four loading shots all at once then two shots two weeks later, then one shot every other week is the standard Humira dosing procedure for Crohns. I've been on it since January.

As far as doing the shots... He'll be *much* better off, IMHO, if he does them himself. There are those here that prefer the Humira auto injecting pen (like I do), and those that prefer the traditional syringes. I know there are going to be posts that take a different view on what I'm going to post, but *please* consider taking my advice, at least to start. You can always go through and take everyone's advice one post at at time. All I ask is that you try my way first. :)

Have your son watch all the injection training videos on Humira.com. Then tomorrow, get the Humira auto-injecting pens. At the doc's office, have your son perform the injections with supervision. Here is the technique that I use, and I literally experience *zero* injection pain from it. AT ALL.

Use an alcohol prep wipe first, then pinch about 1.5 inches worth of skin on the top of the thigh between thumb and forefinger of left hand. Pinch *hard*. Hard enough so that it is a bit uncomfortable. There needs to be enough surface area of thigh skin exposed between thumb and forefinger to place the Humira pen there for the injection. Place the pen on top of the pinched skin and press the button. Slowly count to ten. Lift the pen straight up from the pinched skin. Then let go of the pinch. Make sure the pinched skin is *pinched* the *whole time* the injection is in progress. There are few guarentees in life, but it is my *firm belief* that if your son does this technique *exactly*, he will suffer no more discomfort than the pinching of the skin, and he'll learn to not fear the shots and get the confidence to do them himself. There is the potential that he could be on Humira a long, long time. He needs to get comfortable with it fast.

I don't even hesitate when it's time for my shot anymore. It is a complete non-event.

Let us know how it goes.
Posted 5/28/2008 8:47 PM (GMT 0)
Thanks for the advice. I just picked up the humira and it is the pen starter kit. I will have him watch the video, I think they have some video for him to watch tomorrow before he gets the shots. The humira is refrigerated, like enbrel, do you keep the pen out a certain amount of time prior to injection to let it get room temp?
Posted 5/28/2008 11:53 PM (GMT 0)
A different perspective:

Try not to worry too much. It might help to remember that, if it works, he might be feeling much better before too long. That might help to diminish the fear and pain of the injections. Starting Humira is exciting and worth celebrating!
Posted 5/29/2008 12:03 AM (GMT 0)
He has to stop enbrel last week in prep for Humira and is not feeling so hot, so you're words come at a good time. If this works it will be wonderful and definetly something to celebrate. How long does it take to kick in and provide relief?
Posted 5/29/2008 12:08 AM (GMT 0)
I was unusual in having a fast response. I started to notice differences within hours.
Posted 5/29/2008 12:10 AM (GMT 0)
WOW! Wouldn't that be awesome! I would be thrilled with a week.
Posted 5/29/2008 12:13 AM (GMT 0)
Yes! It would be great!

With me, it was little differences at first, but I found I was able to do more with each week that passed. I'm about three months in and still not well (I have been very severely ill for years) but am better than I have been for a long time.

Might it help him if you planned something fun and celebratory to do after the injections, whether it's a sundae or a special meal or a video night or whatever else he loves doing?

I'm sorry he's feeling so bad at the moment. I hope the Humira works wonderfully for him.

I.
Posted 5/29/2008 12:27 AM (GMT 0)
Thanks for your kindness. He was diagnosed with systemic JRA at 12 years old. He takes methotrexate and enbrel subq and is used to shots but getting four at a time, pen style is new and these are supposed to hurt. The crohns diagnosis is recent, the humira will help control both the arthritis and the crohns. I wish I could take him someplace special but he will want to get back to school. It's the end of the year, finals and other stuff going on. He is finishing up sophomore year and wants to finish strong. I'll take him out later. The real treat will be if he starts to feel better and puts on some of the weight he lost.
Posted 5/29/2008 12:31 AM (GMT 0)
Gee. RA *and* Crohn's. What a tough time your lad is having.

I really hope this works for him and he can experience some renewed health and a happy summer holiday. Does he have anything planned for the break?

I.
Posted 5/29/2008 12:32 AM (GMT 0)
PS. Does he *have* to do the pens? The syringes might hurt less, if only because you can control the injection speed and slow things down when it starts to hurt.
Posted 5/29/2008 12:34 AM (GMT 0)
I didn't know it was an option. The doc odered it and I picked it up today, it is the pens. Maybe I will ask tomorrow. Why does one hurt less?
Posted 5/29/2008 2:49 PM (GMT 0)
I have been on Humira over a year now with great results. I felt better within weeks and was still improving after a few months. I let the Humira get to room temp, I ice the area (lately I have used my thighs) and then do the injection. I have been told that your arms have the most nerves so not to use your arms as it will hurt more. The four shots was a bit much but not half as bad as I expected. I also would recommend not doing all 4 at the same time. Maybe 2 and then let him do the other two. But as a fellow mother I would not want to see my son in pain any longer than he had to be so I understand you thought process. For me now it is more the anticipation of the shot that is worse than the actual shot. I sure hope it works for him. Keep us updated. MB
Posted 5/29/2008 11:01 PM (GMT 0)
Hunira.com only recommends taking them out of the fridge 20 mins before use. I stick them in my jeans pocket for 20 mins to make sure they're good and warm.

Humira really seems to be variable as far as when/if people get relief from it. The word from Humira.com says "... in as little as four weeks", but there are people who have gotten relief much faster, as well as those that didn't see relief for three months or more. I didn't start to see a difference for three months. It hasn't been the "miracle drug" for me that it has been for alot of people here. I hope it is for your son.

How'd the shots go?
Posted 5/30/2008 12:30 AM (GMT 0)
The shots went fine today. My son decided since he was having four shots, and didn't know how painful it would be. that he wanted the nurses to give the shots all at once. Four nurses came in and gave two shots in one thigh and two in the other thigh. He will go back next week for two more shots, and plans to give it to himself while the nurse watches. After they gave him the shots, he got dizzy and started to pass out but the nurse was quick and gave him some smelling salts which helped him avoid passing out. I think it was a combo of nerves and the four shots all at once. He was fine once we left the office and went back to school.

I'm hoping the humira works fast for him, it will make it easier to take painful shots when you know the payoff outweighs any momentary discomfort.

Just curious, does anyone know the cost of humira? I hear it is expensive, our insurance covered it so I dont know how much it cost.

Thanks to everyone for the great advice and support.
Posted 5/30/2008 12:38 AM (GMT 0)
If it helps, here in Australia it's about $840 / dose. Our dollar is almost on parity with yours now, so the prices may be similar.

Glad to know the shots are over and he's ok!

I.
Posted 5/30/2008 12:42 AM (GMT 0)
Are you serious??????????????? It cost that much???????????? I heard expensive but that is WAY pricey!!!!!!!!!!!!
Posted 5/30/2008 12:53 AM (GMT 0)
Yes, it's a bit mind-blowing, isn't it? You can tell him he's the $3000 man today!!
Posted 5/30/2008 2:58 PM (GMT 0)
Ivy6, that's darn near exactly what the local Walgreens charges. Well, 850 bucks per dose, to be exact.
Posted 5/31/2008 9:56 AM (GMT 0)
Amazing. I thought maybe we'd have to pay more because it's (I presume) an imported med - wouldn't we have to pay too get it here?

What's Walgreen's?

softballfan, how's your son now?
Posted 5/31/2008 7:34 PM (GMT 0)
Ivy6, thanks for asking about my son. He is doing fine, tired. I think it's from being the end of the school year more than starting the humira. He hasn't noticed any big changes yet, or at least hasn't mentioned any to me....sometimes 16 year old boys don't tell all. The doctor told him that 70% of people will notice some improvement by the time they go to the every other week regiment and some notice sooner. I hope he is one that will notice sooner rather than later.

I can't tell you how much I appreciate all the information provided to us. Starting humira is a biggie. It was made easier by all here.
Posted 6/1/2008 1:46 AM (GMT 0)

ivy6 said...
Amazing. I thought maybe we'd have to pay more because it's (I presume) an imported med - wouldn't we have to pay too get it here?

What's Walgreen's?

softballfan, how's your son now?

It's a nation wide chain of pharmacies here in the states.
Posted 6/1/2008 1:53 AM (GMT 0)

softballfan said...
Ivy6, thanks for asking about my son. He is doing fine, tired. I think it's from being the end of the school year more than starting the humira. He hasn't noticed any big changes yet, or at least hasn't mentioned any to me....sometimes 16 year old boys don't tell all. The doctor told him that 70% of people will notice some improvement by the time they go to the every other week regiment and some notice sooner. I hope he is one that will notice sooner rather than later.

I can't tell you how much I appreciate all the information provided to us. Starting humira is a biggie. It was made easier by all here.

Just don't give up hope if it *doesn't* happen fast.

There have been alot of people going to weekly dosing and getting much better relief from it. You might want to talk to your son's GI or rheumy about weekly dosing. Especially since he has RA in addition to Crohn's. That poor kid. Just not fair...

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