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Crohn's Disease Forum » Treatment » Humira/Adalimumab » First loading day tuesday dont know what to expect


01-07-2014, 04:27 PM   #1
honeybee
 
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First loading day tuesday dont know what to expect

Well my crohns nurse rang me today all my test results are in and in good to start humira on Tuesday im also on 50mg imuran and pentasa :S Il be using the pen instead of syringe.will i need to wait in hospital after getting the first 4 done? are they extremely sore doing them any info plzzz
01-08-2014, 01:01 PM   #2
Ckoenig
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HI there. I just had my loading doses December 18th and the 2nd 2 doses on Jan 1. The nurse I had was WONDERFUL to me. She was honest and gentle and did things at my pace. She didn't lie and told me the shots hurt very much in terms of the sting, but listen it only lasts a few seconds (10 tops). Breathe through them and remind yourself this will make you feel better. 4 at one sitting isn't fun and you can feel crummy after, however so far for me Humira has been life changing as far as the crohn's goes. I have been able to eat normal and haven't had any of the symptoms I was basically since I started. It doesn't always work that fast, so don't be discouraged if it takes longer, but this was my experience. Hang in there and if you have any questions let me know!

Christina
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Christina 34, MS Clinical Mental Health Counselor NCC at the Center for Integrative Therapy in Westport, CT. Trader Joes employee part time.

Mother of Tyler (13) Twin Girls Rian (11) Victoria (11)
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Dx'd with Crohn's Disease 8/29/2013 6 inches of diseased terminal illeum. As of December 2014 currently in remission!

Humira as of Dec 18
B-12 injections monthly
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.25 Xanax as needed
01-08-2014, 01:12 PM   #3
honeybee
 
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Thanks for getting back to me.ya my nurse is fantastic and i know its going to hurt its the fact Il havet to inject myself is what's freaking me out lol.
01-08-2014, 01:59 PM   #4
Ckoenig
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Well everyone is different but w the epi pen it's really easy. You just press and it does it. It will probably be easier than you think. I was nervous too good luck
01-14-2014, 10:43 PM   #5
Michelley
 
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Hi Honeybee and Ckoenig. I started Humira on November 26, 2013. In those first 3 weeks I gained back 8lbs! YAY! In the past two weeks I am more flared up and lost 6lbs. It seems the loading dose was very helpful and the maintenance dose is not as helpful. The flare up could also be from coming down on the Budesonide. I have been tapering off since May 2013 but it is a SLOW process and just this week I am on only 3mg every other day and will be off it completely in one more week.
It is hard to say why I'm not doing as well now as in the beginning. I'm staying the course and hoping for the best. I am wondering if anyone experiences joint pain with Humira. Let me know how you two are doing since we are newbies. Thank you!
01-14-2014, 11:09 PM   #6
Ckoenig
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HI I am having quite a bit of joint pain but I didn't notice it much more than for a couple days after the injections until I started tapering off of the Budesonide. I'm with you! I got down to 3 mg daily for one week this next week and I am really nervous. This week of going from 9 mg to 6 mg daily I have taken tylenol almost 2 times a day every day for headaches and joint pain. I also have felt a bit heavy in the chest, but I am hoping this is just anxiety. :/ I take my injection tomorrow. I am feeling really crummy tonight, so I hope that it helps!!



Hi Honeybee and Ckoenig. I started Humira on November 26, 2013. In those first 3 weeks I gained back 8lbs! YAY! In the past two weeks I am more flared up and lost 6lbs. It seems the loading dose was very helpful and the maintenance dose is not as helpful. The flare up could also be from coming down on the Budesonide. I have been tapering off since May 2013 but it is a SLOW process and just this week I am on only 3mg every other day and will be off it completely in one more week.
It is hard to say why I'm not doing as well now as in the beginning. I'm staying the course and hoping for the best. I am wondering if anyone experiences joint pain with Humira. Let me know how you two are doing since we are newbies. Thank you!
01-14-2014, 11:26 PM   #7
Michelley
 
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I'm so grateful you let me know this. I feel crummy tonight too and heading to bed soon. I had headaches the first month (bad ones) but not so much the past two weeks. The joint pain is getting intense though. I was in so much pain in all my joints, in my whole body, this week that I considered going to the emergency room. I know they would only give me pain meds and they cause constipation and nausea, so I just suffered through it. Besides all that, I'm SO hungry. I am struggling with my limited "safe" foods. I'm discovering this is a hard disease to deal with and this forum has been like a good friend. Let me know how you feel this coming week after your injection tomorrow. Take care and I hope you feel better.
01-14-2014, 11:42 PM   #8
Ckoenig
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See how do we know what is from tapering and what is from humira ? It's confusing and sucks to be honest and it makes me an anxious mess much of the time I hope you feel better too!

I'm so grateful you let me know this. I feel crummy tonight too and heading to bed soon. I had headaches the first month (bad ones) but not so much the past two weeks. The joint pain is getting intense though. I was in so much pain in all my joints, in my whole body, this week that I considered going to the emergency room. I know they would only give me pain meds and they cause constipation and nausea, so I just suffered through it. Besides all that, I'm SO hungry. I am struggling with my limited "safe" foods. I'm discovering this is a hard disease to deal with and this forum has been like a good friend. Let me know how you feel this coming week after your injection tomorrow. Take care and I hope you feel better.
01-15-2014, 06:45 AM   #9
n00b
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I am in exactly the same boat as you guys.

I have been on 9mg (3 x 3mg a day) of Budesonide for the past 9 months and had some good results.
I started with my 4 loading doses of Humira in the start of December 2013 and my follow up two 2 weeks later and then every two week after that (so 6/7 weeks of treatment) I really felt a difference over Christmas with no pain and fairly solid BMs

As soon as I started the Humira I dropped to 6mg of the Budesonide and all was still good. On the advice of my GI nurse I have tried to drop down to 3mg but as soon as I do within 2 days I start to feel rubbish again and I get bloating and very loose BMs. So I am feeling really quite disheartened today (which I know only makes matters worse) as I feel the Humira does not work on its own and it is the Budesonide that is doing the job.

I am hanging to a little hope that it has only been 6/7 weeks of treatment and they say it can take 12 weeks to begin to feel a benefit.
01-15-2014, 07:44 AM   #10
LibraryGal
 
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Hi All,

I completed loading doses in December and began evety other week dosing last Friday. I felt some minor improvement initially and now my symptoms seem the same - nausea, gut pain, cramping and diarrhea. My appetite has decreased again and have lost a few more pounds and am weary of nutrition drinks and "white" foods. Have had the joint pain and headaches post injection as well. I, too, know it is early in the process and am trying to be patient and remain hopeful.

Hopefully, we are all just " slow starters/responders."

Thanks for sharing your experieces.
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Diagnosed: April 1977 Crohn's Ileitis

Surgeries: 5 small bowel resections, abscess I&D's, 1 seton (now removed fistula healed!), fissure

Current Regimen: Humira 12/13/13, B12 injections, IV iron, multivit, folic acid, calcium, vitamins C & D

Meds previously taken: Sulfasalazine, Azacol, Prednisone, Metronidozole, 6MP, Imuran, Entocort, Pentasa, Remicade, Cimza
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