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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Another Humira Log


12-26-2007, 03:07 AM   #1
Sojourn
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Another Humira Log

Entry 1:

I've been told I will receive my first shipment of Humira on Thursday, and I plan to inject on Saturday. I will be keeping this log as much for own my record as well as for those who are interested. I will begin with a description of my past and current condition.

I was diagnosed at the beginning of 2003 after being hospitalized with what was initially described as a colon infection in late 2002. Following diagnosis I was put on Prednisone and Pentasa. After weaning off Prednisone symptoms came back and Pentasa seemed to help little. I quit taking Pentasa after a couple of months and pursued an alternative route taking probiotics, aloe vera molecules, and limiting my diet. I improved greatly and quit going to the doctor.

In 2004 symptoms began to return but I continued natural approach and limited eating to one meal a day and snacks. I went to the hospital twice during this year for pain and dehydration. I returned to doctor who put me back on Prednisone and Pentasa. Again, after weaning Prednisone, symptoms returned. I went back to natural approach and lived with pain and symptoms in moderate control.

In the Summer of 2007 I was in so much pain went back to doctor. A fistula had developed from my intestines to skin in abdomen. I was hospitalized for draining of abscess and fistula. Lived with draining fistula for three months before another surgery to remove fistula and half of my right colon.

Fast forward to today: I'm feeling great overall physically except for my BM's which are still numerous and unsightly (watery a lot and unformed). So now I will begin Humira and I'm not sure how to pronounce it. My GI keeps saying Hew-my-ra but I have always pronounced it Hew-meer-a. Whatever it is, I hope it works because I don't know how much longer I can do my job like this and I need my job for the insurance.

So much for entry #1. Next update will come after first injection.
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Hospitalized & Diagnosed: 2004
Mission trip to India: 2004
Mission trip to Philippines: 2005
Contract job in Iraq: 2006
Abscess drained, temp. ostomy: June 2007
Lap-right-hemicolectomy: October 2007

Done
12-26-2007, 10:22 AM   #2
Kev
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Hey Sojourn. I'll keep my fingers crossed. Good luck with the humira. I would suggest that you keep taking the pentasa as well. By itself, it apparently isn't a good treatment (sort of like spitting in the face of a forest fire) but used in conjunction with other treatments (like humira, or even LDN) it should limit the inflamation. I continue taking my salofalk with my LDN, simply because that's what they did in the studies/trials, and since it couldn't hurt (since it isn't contraindicated) then it possibly might help, OK?
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12-27-2007, 02:52 AM   #3
saidinstouch
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Sojourn do you know about the MyHumira program + free sharps disposal offered by Abbot? If you haven't I am providing a link to the information so you can signup for both as I believe they are valuable resources for anyone on Humira.

http://www.myhumira.com/ (myhumira information)
http://www.myhumira.com/Disposal/Default.aspx (sharps disposal information)

When you do your 4 initial injections, be sure to do them fairly spread out. I did left and right side of both legs about 5 inches apart and followed 2 weeks later with 2 stomach injections one on each side. Since then I have been going only on my legs upper left, upper right, lower left, lower right and then repeating to help prevent injection site reactions.

I highly recommend you invest in one of those blueice reusable ice packs the sell at the pharmacy to ice the area down as it is easy to reuse and makes icing the entire area a lot easier. Also if you haven't heard, remove the pen from the fridge about 15-20 minutes before the injection to let it get to room temperature and you should ice the injection site for pretty much the entire 15-20 minutes to help minimize the stinging.

Good luck with the Humira, it has done wonders for my stomach pain since I started it and hopefully you will get some great results too! If you have any questions I can try to help you out with what I know, but the links I gave you above will have all that information and a whole bunch more, especially if you call the 24-7 customer service hotline that has trained nursing staff to assist you with any of your needs or concerns.
01-01-2008, 08:14 PM   #4
Sojourn
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Thanks for the links, and yes, I have been there and become familiar with the site. I went on there today to try to find out what would happen if the Humira sat unrefrigerated for 4 hours. I have had some complications with getting started.

First of all, either the doctor or the nurse screwed up and sent in the prescription for only 2 pens instead of 4. Then when my parents got the package, my dad refrigerated the ice packs instead of the pens and they sat unrefrigerated for 4 hours until I called and realized what had happened. So I now I'm trying to find out if the medicine is still good. I'll call the nursing staff at the Humira site tomorrow.

The nurse faxed in the correct prescription but the pharmacy said it would have to go back through insurance and said there could be some issues.

Thanks for the other useful tips. I'm hoping this will get worked out so I can get started soon.
01-03-2008, 07:30 PM   #5
Sojourn
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I talked to the people at Humira and they said it would still be good after sitting at room temperature for 4 hours. But they asked a lot of questions, so if yours goes unrefrigerated make sure you call them before assuming it is still good.

And my new shipment arrived, so I should be starting within the next couple of days.
01-08-2008, 06:05 PM   #6
Sojourn
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I just took my four loading doses. I'm beginning to feel a little queasy and am developing a headache. I'm hoping this queasiness doesn't turn into nausea, though, it's feeling a little like it might head that way.

I didn't have any injection site reaction except for a little redness. I did ice down the areas and the pain was minimal. I took one injection after another with no break in between. I took one in each thigh and one on each side of my stomach.
01-09-2008, 02:05 AM   #7
saidinstouch
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Good job Sojourn, the first 4 are slightly easier than the second 2, at least they were for me, but if you didn't mind the pain then you are good to go from here on out! Hopefully the headache and nausea pass for you and you don't have any major issues.
01-09-2008, 03:57 PM   #8
Sojourn
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Thanks, they were easy but it was kind of a rough night. I'm hoping it was just because of taking so much all at once.

The nausea went away but I woke in the middle of the night a couple of times having to go to the stool and that hasn't happened in awhile. And I had real bad sweats. My bed was completely drenched. I'm feeling fine today so hopefully it was just because of the initial large dose. And if it otherwise controls the Crohn's I'd be willing to put up with that every couple of weeks.
01-10-2008, 10:52 AM   #9
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Yeah, congrats sojourn. Keep the faith. Got my fingers crossed that it all works out for you. Take care.
01-10-2008, 07:57 PM   #10
katiesue1506
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Yes I forgot to write that in my own journal, but my first loading doses made me very queasy. Then... after I missed a dose due to doctor's orders, I got queasy and had an instant flash fever... got very hot and had breathing problems... so I think once you body isn't as used to using it, or if its your first time, that it affects you in these ways...


sorry that post wasn't exactly coherent... I am sleepy
01-22-2008, 06:37 PM   #11
Sojourn
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On day 12, after starting Humira with 4 loading doses, I had my first really solid stool. But the next day was one of the worst I've had. I don't know exactly what to make of it, but I'm trying to be positive and taking the fact that I had at least one solid stool as a good sign.

Tomorrow I inject my next two doses.
01-22-2008, 08:35 PM   #12
saidinstouch
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It takes a while for your body to adjust, but that's good progress to have a solid stool. In another 2-4 weeks hopefully you'll start to feel much better.
01-23-2008, 08:22 PM   #13
Sojourn
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Thanks, I just did my injections. I can feel a slight headache coming on but no nausea so far.

I think it's actually starting to take effect, though, from the first injections. I think the reason I felt so bad after my first solid stool is that I continued to take Questran and became painfully constipated and then diarrhea. Today I did not take any Questran, and am not having diarrhea so far, and am actually passing gas. Before now, following my surgery, I couldn't pass gas without diarrhea or it meant D was on the way.

I'm not ready to start celebrating yet, but this another promising sign.
01-25-2008, 04:01 PM   #14
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Day 16

The big D is back today. The day started with a solid stool but had diarrhea in the afternoon. I was kind of surprised anyway, that it started going so well all of the sudden.

I figure there will be some ups and downs and was not really expecting relief from the D. I thought it was caused by the surgery and didn't know if Humira would help. If I do ultimately get consistent remission, and relief from D, then I would be a good example that this stuff really works well. Because if the D is not because the surgery, that means the Crohn's was really active even coming out of surgery. If Humira can knock it down in this severity, that's pretty impressive.
02-01-2008, 05:58 PM   #15
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Day 23

I'm really beginning to think that the D is because of my surgery and the doctors just weren't telling me the whole story.

I didn't get into the specifics of what part of my right colon was taken out, but after some reading, a right hemicolectomy usually does take out part of the ileum. If my ileocecal valve was taken out, then D is a given, probably permanently. At my next appt. I will find out exactly what was removed. I'm still curious why the surgeon seemed surprised that my BM's weren't normal two weeks after the surgery. My GI thinks it is because my Crohn's is still active. But the make-up of my stool (greasy film on top of water) would indicate a problem with bile salts absorption similar those who have had their ileocecal valve removed.

Though the fact that I did have that good day of somewhat normal BM's, I still take as a good sign. Since then I would rate them as a 3 on a scale of 1 to 10.

Otherwise, I'm doing well. There is some minimal pain in the LRQ occasionally. Next injection 2/6.

Last edited by Sojourn; 02-04-2008 at 09:40 AM.
02-05-2008, 06:16 PM   #16
os1kne
 
Thanks for posting this log. I'm set to start on Humira on Friday.
02-06-2008, 12:53 PM   #17
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Hey Sojourn, good to hear it's having some impact. I started humira in August '07, this last fall, after being diagnosed with Crohn's. Humira does not seem to impact me much. I have been on bi-weekly injections (after the initial 4 shots and 2 shots) and had a 3-week flare up over Christmas and have just developed a fistula while on humira. My GI says that humira should treat the fistula, but it does not seem to respond.

I've never had reactions to humira, then again, it doesn't seem to be very effective for me. My GI says that's normal and it can take up to 7 or 8 months to have a substantial impact.

Keep us posted on how you are doing.
02-08-2008, 02:42 AM   #18
Sojourn
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Day 30

Wish you the best on it os1kne. toastermm, sorry it hasn't been working for you. I can't believe you developed a fistula on it. It was probably already formed or forming before you started, hopefully.

I'm still not real certain if the Humira is working for me, or if my bowels are just finally adjusting after the surgery. But one thing is for certain, I did not have a formed stool until I started Humira. I'm also using Questran, but it seemed to have no real effect until I started Humira.

I had my 3rd treatment two days a go, and now I've had two days in a row of good BM's, 7's on a scale of 1 to 10. I only went two times yesterday. I give the Questran credit for this as well, as last time I quit taking Questran I went immediately downhill.

So I'm feeling pretty good right now. No trying to find a restroom yesterday. Had BBQ brisket for lunch and didn't have to use the restroom until 7 hours later. And there was no urgency. I probably could have waited another couple of hours.
02-14-2008, 11:00 PM   #19
ProfessorJBee
 
Hello Sojourn,
Thanks for posting all the info about Humira. I just started Humira on Monday (2/11) and am curious as to when I will start seeing a change. I have a fistula connected to my bladder, so my GI is thinking Humira will help...and so do I! I did not get all four shots in one day. I got two shots over two days. I did not feel any bad side effects. I am a little discouraged today, it has not been a great Crohn's day...though not the worst I have had. Your posting made me feel better as far as the time frame in which to expect to see a change. I must say, I do have more energy and considerably less pain. Anyway..just wanted to let you know that I am gratefully for all this information and looking forward to being a part of this community. Thanks!
02-16-2008, 09:50 PM   #20
TammySue62
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I have been on Humira for about 3 months now and I have 4 fistulas in total.I have not noticed a significance change as of yet! They are still draining and my hair is still falling out big time. Not impressed with this drug yet. But this is only my opinion.
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02-22-2008, 04:08 AM   #21
Sojourn
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Day 44

I had my fistula removed before I started Humira, so can't provide any info on that front.

But the Humira/Questan combination is working really well for me now. If I don't take the Questran, though, I'm in trouble with D. With it, I'm having 1-2 normal BM's a day.

Again, though, I don't know if this is because my bowels are finally settling from the surgery, or if it's the Humira. I don't know if it's just a coincidence that I started getting normal at the same time I started Humira.
04-01-2008, 12:36 PM   #22
Sojourn
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This will be my last posting to this log unless something extraordinary happens.

I'm on the same regiment of Humira, 40mg every other week, and Questran or Imodium every day. I really had hoped I could get off the Questran and Imodium. But since I can live a normal life with them, I won't complain. Maybe eventually, I'll be able to get off them.

So, overall, I would say the Humira is working. I blame the need for Questran on the resection surgery. Without the Humira, the Questran and Imodium do no good.
02-28-2012, 04:20 PM   #23
Divinity2123
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I am supposed to start my Humira injections today, my husband went to pick up the RX and said it was stored on the shelf.. I am kinda freaking out, isnt it supposed to Refridgerated?
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