Fear of Humira injection.

[SophieG1993]

Heeeey, I'm Sophie, 18 and from Burnley, Lancashire, England. You can find my story on the My Story forum, but for now, I wanna talk about Humira...

I've been on Humira since March 2011. On the first day I started, I had to have 4 pen injections, 2 weeks later the dose went down to 2 injections and 2 weeks later the dose went down to 1 injection (like most people)

I was doing well, Humira started working pretty much within one week of taking it, I was being brave, taking the injections whenever I had to and even managed to get a job. But in the past month, I've somehow developed a fear of doing my injection. The last full 40mg dose I had was about 6 weeks ago. 4 weeks ago it took me over an hour to pluck up the courage to inject, I ended up pressing the button accidentally whilst it was on my thigh, I pulled the needle out and the rest of the drug squirted all over the room :/ So I probably got about 5mg instead of the full 40mg because the needle was only in my leg for about 2 seconds before I stupidly pulled it out. I was adviced by my IBD nurse not to inject again until 2 weeks later. So, two weeks ago, I tried again, but physically couldn't touch the button, I was shaking, crying and was trying to do it for 2 hours. Eventually, I backed out.

So, I haven't had a full dose in aaaaaaages, and have started to develop abdominal pain. My nurse was supposed to come round to do the injection today, but she cancelled, so I'm having to do it myself. I was given a dummy injection to play with, to get used to the dreaded 'CLICK' the pen makes when you press the button. I'm more confident doing it now, than I was a few weeks ago, but I dread the pain quite a bit :/ I cringe really badly at the thought of a needle firing at such a tight area of my body (my thigh) so it's kinda hard to overcome!

Any support and confidence boosts would be much appreciated since I have to do it today! Thanks for reading me go on and on

xxxx

 

[beth]

I go through little phases of apprehension but tell myself to just get on with it. A good treat afterwards helps like biscuits, cake or crisps

Do you always inject into your thigh? I always go for tummy as it doesn't hurt much.

 

[Grant]

Sophie, sorry to hear this. Is there any way you could arrange for the nurse @ your local surgery to do it for you instead?? I do mine in my belly and as beth says it doesn't hurt too much @ all. Make sure its out of the fridge for about 12-15mins to warm.
Think you should have another word because your Crohns will get worse unless you can take your meds.
Rgds
Grant

 

[SophieG1993]

I've had it done in my stomach before, but the pain was much worse than it is in my thigh. A nurse was supposed to come round to do it today but she ended up ringing and couldn't do it. I always take it out of the fridge and wait at least 15 minutes before injecting.

I tried doing it tonight but my hands and thumb was shaking badly, I was sweating and crying. I just couldn't do it

 

[muppet]

Much worse, quite fast, and hospitalization is likely. Scary as the injections may be, a sudden loss of remission is far scarier.

 

[rygon]

Cant you get one of your family or friends to inject it for you? Im not sure how much help a nurse will be as its more phsycological rather than physical why you cant inject.

There was a thread saying that they would mark out the veins of their kid and make sure the injection didnt go there as it hurt more, maybe thats worth trying.

But as said you really do need this medicine, and i think the longer you leave it the worse it will get for you

 

[RFarmer]

I know in Canada, we can get lidocaine topical patches for needle use. Lidocaine creames are relatively expensive, but we can buy these little dermal patches that have a pouch of lidocaine in them. Somehow, the lidocaine passes through the adhesive side, into your skin. They used to look like little bumpy stickers, but any pictures I see now make them look a bit like bandaids...

Maybe give them a go, until you conquer your fears

 

[SophieG1993]

I finally got it sorted and I'm now going to my local GP once every 2 weeks for my nurse to do it However, on her first time doing it, she forgot to take the lid numbered '1' off (the grey one that covered the needle), put it on my skin and pushed the button. I heard a click, but it wasn't as loud as it usually was, and I couldn't feel any pain. So I asked 'are you sure you've done it properly?' as I felt some form of liquid trickly down my leg... Yep, it was wasted!

But we got it done eventually! Thanks for the support, hopefully I'll carry on being brave!

 

[Rina]

I feel your fear, as I have to do the same shot. Do you have anyone who can give you the shot so you don't have to do it yourself? I have my mom give it to me. It's kind of annoying to rely on her coming over once a week, but it's well worth it because I it is so much worse when I have to give it to myself. And I do believe I would pull out like you did. My mom sits with me for a moment while I take a few deap breaths. When I am ready, I count to three, "ok, one, two three." I breath in and out slowly, and let myself cry if I need to. Shake it off and go get a piece of chocolate and let it melt in my mouth lol. Hope this helps somehow. Don't be hard on yourself. Just remember to breathe deep, and try to quiet your mind. Love and respect

 

[Tesscorm]

I used to buy a cream called Emla for my children when getting vaccinations. The cream numbs the skin for an hour or so (probably very similar to the patch mentioned above). I'm in Canada, so am not sure if you can buy it in the UK.

I can imagine it must be quite difficult to give yourself a shot :yfrown: but maybe a numbing cream or patch may make it easier for you to eventually do it on your own. Good luck!

 

[outlier]

I also end up freaking my self out randomly. now i give my self a treat for doing it. usually chocolate. see if someone can do it for you for a while, like a parent or a friend.

 

[tiloah]

Oh glad to hear you got it "sorted." Keep being brave! I hope Humira works wonders for you.

 

[SophieG1993]

My mum's tried to do the pen injection for me, but I just freak out when she comes anywhere near me, God knows why. I'm gonna stick to the nurse doing it for now, it's not too much trouble because the doctor's is near my work so I can just pop in after a shift. I guess it doesn't really matter who does it, as long as I have it done!

Thanks everyone

 

[Crohn'sFor Life]

Needles normally freak me out...

But the Humira pen does not bother me at all. I tell myself that I should be thankful to be able to administer Humira in the comfort of my own home. The alternative is the 2 months I spent in the hospital nearly bleeding to death from my butt.

Needle or hospital?
Easy choice.

 

[darkmuse]

Sophie, I took Humira for about two months. I never had problems giving myself injections as I had done it before during a research study on another drug.

I don't know if this will help, but have you tried putting some earphones on and listening to an mp3 player while doing the injection? It might help relax you, not to mention the "click" sound might not be so noticeable.

Good luck with your next dose, Sophie! Take care...

 

[Rina]

Darkmuse, that is an excellent idea! I will try that next time! I might listen to some punk, cuz it blocks out physical pain for me haha. U just feel hardcore like f ya I can take it! Hahab ok I'm done.

 

[MikeinBklyn]

Sophie,

Not to sound coarse.....but you must grin and bare it!

Let the H warm up for ½ hour before injection. Do the prep, push the button.

Take a breather and go on.

It's mind over matter! This is nothing that you can not do!

I do wish you the very best of luck.

 

[DougUte]

Sophie, I am glad you arranged for somebody to do the shot for you. I take Humira. After trying to take the loading doses, and having the same thing happen with misfiring pens as you did, I had my wife give my shots. I have no problem giving other people shots, but for some reason I can't do my own. The click of the Humira pen sounds like a cannon going off and I jerk.

 

[beth]

How's it going Sophie?

 

[MelissaM24]

I have been using the pen for a couple years now, and I let it warm up from out of the fridge for at least a couple hours. The closer it is to room temp., the less it stings! I also found out that using the syringe instead of the pre-loaded pen is so much easier and less painful. You just stick the syringe in and you can inject the medicine as fast or as slow as you want to. I did it that way in the hospital and it cut down the pain by at least 70 %! I read your updates, how are you doing now?

 

[butterfly35]

Tips for Humira that helped my child

My son uses "emla cream" on the injection spot. It's a "numbing cream". Your doctor can prescribe it. Cover the cream with a piece of plastic wrap and leave it for about an hour. The next step we do is we put ice over the plastic wrap for about a minute. Third step is we inject a small amount of lidocaine (with a tiny 30g needle) where the cream and ice were. The doctor can prescribe this also. Actually, the lidocaine addition is becoming a "normal addition" to the humira injection protocol in the US (at least for pediatrics). The lidocaine injection is not felt due to the numbing cream and ice so the thought of having 2 shots instead of one, doesn't seem to really play in. The lidocaine then completely numbs the area making the humira injection tollerable. At frist the doctor had us draw up the lidocaine into the humira syringe but that didn't work as well as injecting the lidocaine and giving it time to really numb the area.

Humira is a VERY painful medication. The self-injecting pens make it 10 times worse. It IS available in a pre-mixed regular syringe. The amount of medication is small so it's not a "long drawn-out injection". I would ask your doctor for this Emla/Lidocaine injection protocol. If you can ease the discomfort in any way it will probably help with some of the apprehension. If for some reason you can not use lidocaine, icing the area for a couple minutes can numb it too.

Can someone help you do the injections? (this seems to help) If you don't have anyone maybe you could explore options for injections through your Dr's office. Sometimes when my son is having a great deal of anxiety about his humira, we ice again after the lidocaine injection to make sure he does not feel it at all. It's a very emotionally challenging course to be on. It may help to talk with someone about this or ask your physician about a support group. ~Even an online group. It's important to have a way to release what you feel. It's is very hard to go through what you are going through. When I was on Enbrel and Methotrexate injections, I found myself having a lot of anxiety leading up to the medication days. I was mad I was being 'forced' to endure such things. I felt like i had no say or control. It can be very frustrating and I too had times when I put off my meds. My son has times too. The physical symptoms can recur but that is something we know will happen. Taking care of your emotional health is as important as your physical health. If you need a break, you need a break. Don't beat yourself up over it.

I hope this can help some. I can be direct to a fault I pray this finds you doing well.

Oh yes, I just read the previous poster-- letting it warm to room temperature definitely seems to help too. Keep us posted, prayers and hugs!!

Last tip We tried the lidocaine patches... they are lousy plus they fall off like crazy. The cream, ice, lidocaine inj, ice, then humira ..

 

[thecrohn]

You don't need a nurse to inject it yourself. I can totally relate- it's too hard to stick yourself with a needle, especially when it hurts and you have to twist it to see the yellow! I had my husband do i every 2 weeks. When he couldn't, I had my sister do it.

It's important you tell them when it hurts, when it doesn't. Usually we'd do a "3...2...1... CLICK" and that way I'd be ready. Make sure you tell the person giving you the shot to HOLD IT STEADY and STRAIGHT UP IN THE AIR. The steadier the needle, the less it'll hurt.

Also, it's important to make sure the yellow shows. If you take it out before the yellow marker turns yellow, you may no have gotten your full dosage. It's ok if some drips out, as long as he marker is yellow.

 

[outlier]

that have you tried injecting so you see the yellow. that way theres no twisting.

 

[MelissaM24]

When I was a kid, I was definitely afraid of shots, so I feel for any of the younger ones who have to do these shots as they are more painful than other shots. Luckily I have gotten used to it and I just pinch my leg kind of hard to make sure there's a nice flat surface and then inject the medicine. Sometimes it hurts more than others, kind of like a bee sting, but then it's pretty much over. I have to do mine weekly. I have to admit, it was scary doing them myself for the first time, especially since I had to do the FOUR loading dose shots at once, so I did them while I had my Remicade nurse watching and just making sure I didn't have any reactions. I felt a lot better that way!

 

[maevethewave]

Hey Sophie. When I was 10 I had to take the humira and in the shot form, not the pen. Unfortunately, I had trouble with it and I had to switch to a diff medication. If you are having trouble with taking your medicine, then you should ask for a different one. For a long time I have been in a kind of remission with taking methotrexate and remicade, which the remicade is a infusion and I go every 4 weeks. It is easy. I totally suggest it. I'm twelve now and I know, I shouldn't be on here, but I dont care at all. Hope for the best

 

[Norseman]

If it is any help to you...
I could not continue with Humira after a simillar incident. I was going to start up again with humira after my 4th resection of my small bowel, and as I had 2-3 weks of having incetions in the skin of my stumach, I lected to set it in my thigh...big mistake. Same thing as with you happened...and after that my hands where shaking so much I could not do it on my own, and I chickened out...

It went well for a year, then a massive flare resulted in another emergency surgery...I have now been on Methreaxe injections assited by the local hospital for 6 months but stopped those to, as it turned out they had no effect. Starting Entyvio soon...whcich will be a once every 8 weeks affair once the booster doses are done with.

Else I have had 2 tours in the Middle east with the Norwegian army, and 1 on in the Balkans, and have worked in war zones in Africa, Iraq, and South Asia...and I am scared of needles, lol