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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Start Humira or Wait?


07-31-2013, 01:30 PM   #1
TwinkleToes
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Start Humira or Wait?

Hi Everyone Ė

Iím hoping I can get some advice from everyone on here. Iím pretty sure I have my mind made up, but could definitely use some suggestions. Iím currently on Pentasa for my symptoms. My symptoms, however, have been coming back probably once a week or so. My Doctor and I agreed that Humira will be my next form of treatment. Iím supposed to get the Humira in the mail this week, and set up the appointment with my Nurse for the training on how to inject.

Hereís my issue Ė Iíve never taken this before. I have no idea how the Humira is going to react with my body, especially after the initial dose. Iím going out of town from August 11-18th for work, which is going to be a very high-stress week. While Iím concerned about flaring and the Pentasa not controlling my symptoms, I just donít feel comfortable starting the Humira a week before I need to leave town. I cannot afford to be out of work next week (the week prior to my work trip), and I definitely donít want to be in the hospital when Iím in California (I currently live in Orlando).

I called my Doctor for suggestions, and got somewhat of a snotty attitude from the Office Manager stating, ďWell, I can tell you already that sheís going to tell you to start the Humira right away.Ē Despite my explaining to her that I CANíT be out of work this week, and I do not feel comfortable starting it because I do not know how it will react with my body. I will be trying to eat well on my trip, but unfortunately Iím at the mercy of our meal choices. Our days will be long (14-16 hours) and high stress. I almost can assume that Iím going to deal with a flare.

Can I please get some advice? I feel like Iím making the right choice by waiting, but at the same time I could use some support or other suggestions. My only other thought was to put myself on Prednisone for that week, since when I was on it, it really helped with my symptoms. But, I just donít know if thatís smart or not. I just feel like Iím getting no support from my Doctor.

Please Help!
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07-31-2013, 04:12 PM   #2
cosmic dave
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I started humira two weeks ago I put it off because of similar concerns but wish I hadn't I had four injections to start and the pain stopped. Two weeks down the line and another two injections yesterday and I have no pain and have gone from 6 or 7 trips to the toilet to once a day! I feel fantastic at the moment I understand its a bit scary but please give it a go ASAP and I hope it works as well for you as it has me.

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07-31-2013, 04:24 PM   #3
deb123
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Hi,
I started Humira 3 weeks ago. I had my four loading dose injections on the Friday and left for 2 weeks in Turkey on the Monday. I was nervous that my body might react, so I took along some Piriton just in case.
I had a bad reaction to Remicade so was very nervous, but I was fine and I had a great holiday. The injection sites were slightly itchy and hot, but I put ice on them.
I can understand your worries, but hopefully the Humira will keep you well, with such a big initial dose. Worrying either way will certainly make things worse.
Good luck! x
07-31-2013, 06:12 PM   #4
lblair
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I started Humira a couple of weeks ago I have finshed the loading dose. Today he up me to 40mg every week I hope this helps me!! It seems like i did better with the 4 shots!! And how do you know when you are in remission???
Thanks
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08-06-2013, 04:41 AM   #5
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I started humira 3 days ago. On a 1-10 pain level scale I have gone from a full blown ten to prob a 4. And this literally happened the next day! It has honestly been my miracle drug. Before a few days ago I hadn't eaten real meals and had been sick in bed for a month or so. I went back to work today for the first time in a few weeks and it went really well! I think you should deff give it a go and see if you could have similar results. I wish you the best!!
08-06-2013, 05:48 AM   #6
TwinkleToes
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Hi All -

Thank you so much for your comments. I have decided to start my humira and have a nurse coming to the house today for my initial dose. I have been up since 3am because of nightmares and just being scared, but I'm looking forward to feeling better. Feels like I have been flaring for over a week now, and I'm back to having 3 BM's before 9am. Needless to say, this is not my ideal situation for my trip, so fingers crossed all goes well and I start feeling better soon! Thank you for your help!
08-06-2013, 05:52 AM   #7
cosmic dave
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Agreed it stopped my symptoms overnight! !!! 3 weeks on from my loading dose im going to the toilet like normal people and have zero pain I must admit tho im a bit annoyed the dr didn't put me on this before ive been struggling to control my crohns symptoms for a few years now.

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08-06-2013, 07:20 AM   #8
TwinkleToes
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Here's hoping I have the same luck!
08-06-2013, 04:41 PM   #9
deb123
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How did the Humira go?

I have finished my loading doses - the nurse came to my house to monitor me, but today I did my first shot on my own!!
Felt quite sorry for myself, and kept putting it off until I was so wound up and fed up with stressing about it, so I just gone on with it.
It actually isn't that bad, think im still stressed about Remicade reaction.
Hope you coped ok with your first lot - I actually swore when I did my first!
08-06-2013, 04:56 PM   #10
PsychoJane
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The beginning of my humira went well too and acted up quickly. I had some tiredness and headache but nothing major. Hopefully your loading dose will do the trick so you can be carefree during your trip!
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08-06-2013, 05:34 PM   #11
TwinkleToes
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Well, here's the good news. My injections went really well. Did all 4 in my legs (2 in the left and 2 in the right). I didn't have any swelling, bruising, and the nurse said I did a great job overall. I feel very confident that my next doses will go just fine.

The one bump in the road, is that I've been up since 3am stressing about it. So, when the nurse came and I finally did the shots, right after my third I was so anxious the whole thing set me into a vasovagal response and I nearly fainted. Thankfully, that nurse was there and calmed me down, because I was terrified that I was having an allergic reaction. Within 10 seconds I lost all color in my face, my entire body got clammy and I nearly passed out. I also felt so sick, like I was having the worst panic attack of my life. She said it was definitely a reaction from being so anxious. That happened right after my third shot, and after 5 minutes I was good to take my fourth shot and was just fine. I find it so funny that I've had two tattoos, multiple surgeries, and when I have to stick myself with a little needle I have what felt like the worst panic attack of my life. Go figure.

But, anyway, I'm really excited to see how well I do on Humira. I really pray for some changes in my symptoms over the next few days, but only time will tell. Thank you to everyone who convinced me to start it - I'm glad I did!
08-06-2013, 10:37 PM   #12
Traumanurse
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Hey Twinkle.

I wish you all the best, but please don't be too disappointed if you don't see improvement right away. It can take months to see changes.

Best of luck on your trip though. You can do it either way!
08-07-2013, 02:12 AM   #13
deb123
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Hey Twinkle toes, you did it!
Its amazing how powerful the mind is and how important it is to try and find that positive and strong state of mind.
I try to draw from these sorts of stressful situations and get stronger from them. I know it may sound weird but if I think about all the scary, stressful things i've been through and convince myself I can do the next hurdle.

My injection sites were fine, but about a week later they became inflamed and a bit swollen, but that might be because of the sun. Putting ice on them every few hours helped them go down.

Did you pinch a bit of thigh, or go straight in?
08-07-2013, 07:31 AM   #14
TwinkleToes
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I definitely pinched a bit of thigh, and did it right on top of the thigh. Looking at my thighs now I can't even see where I injected! Honestly, if it takes a few days or a few months, that's fine. I'm just happy I started!
08-08-2013, 06:25 PM   #15
MikeinBklyn
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Just checking in to wish everyone the Best of Luck!
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08-08-2013, 06:32 PM   #16
TwinkleToes
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Thank you! Things have been great - no side effects (yet) and I feel normal!
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