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07-02-2008, 09:47 PM   #1
butt-eze
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Amy & Humira

Not to repeat what others have already done but I would like to just write down my thoughts as I begin my journey with Humira.

My husband and I met with my doctor today and discussed the pros and cons of starting Humira now before the disease progresses. While I was waiting for the doctor to come in the exam room I took an Ativan. I was starting to feel anxious about making such a life altering decision. By the time he got in there I was cool and calm.

Our current markers are:
1. My SED rate has increased from 24-37 in the last couple of months.
2. My colonoscopy/endoscopy showed mild inflammation in the colon and stomach.
3. My arthritic pain in my knees, ankles, and feet is uncomfortable to say the least.
4. I have pain and bleeding during BMs due to a fissure.

The cons:
1. I will be immunosuppressed and more susceptible to upper respiratory infections.
2. I risk the chance of developing BOOP again.

My husband, the doctor, and I all feel that we are making the best decision for me based on the current markers; which we will use to determine my progress.

I will need to get a Pulmonary Function test to provide a base rate for my lungs as I've had problems in the past.

I expect to start Humira sometime next week. My nurse gave me the Rx card that should cover my copay for the first month. I will report how that goes.
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Amy
Crohn's Disease
Humira started 7/10/2008
Committee Chair for CCFA Northwest Chapter
07-03-2008, 12:00 AM   #2
RHOV
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I hope all goes well for you!

I love reading the medication journals. I think it gives others a better sense of what the meds are like day-to-day than a general description. So the more the better!

Could you remind us what BOOP stands for again? I know you've mentioned it before, but I've forgotten!
07-03-2008, 12:38 AM   #3
butt-eze
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BOOP-Broncial Obliterans Organizing Pneumonia. Bronchiolitis obliterans with organizing pneumonia (BOOP) is inflammation of the small airways (bronchioles) and surrounding tissue in the lung. It can affect a small segment of the lung or the entire lung. Bronchiolitis obliterans with organizing pneumonia isn't associated with infection or lung cancer.

The term "obliterans" refers to inflammation of the bronchioles, which partially destroys (obliterates) the small airways. The term "pneumonia" refers to inflammation of the lung tissue around the bronchioles — but not due to infection with an organism. A more accurate term to describe this inflammation would be "pneumonitis" — which means inflammation — but "pneumonia" is the term that has stuck.

In many cases, the cause of BOOP can't be determined (idiopathic). But known causes include:

Certain medications
Radiation therapy for breast cancer
Bone marrow transplants
Certain connective tissue disorders, such as lupus


In my case I was unresponsive to steroids (even at 1000mg IV). I was started on IV chemotherapy, and sedated and intubated. The machines forced air in and out of my lungs. I was sedated for 3 weeks.

My case is considered idiopathic. My Pulmonologist believes it was Crohn's but can't say for certain. It is just opinions at this point. They certainly wouldn't risk putting me on Remicade again.
07-03-2008, 12:51 AM   #4
Isla
 
Wow that is one risky complication.
07-03-2008, 12:59 AM   #5
butt-eze
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I agree Isla. Although I feel like we know how to fix it this time. I feel like my situation got worse because the doctors had such a tough time diagnosing and treating me. There are good sides to having a bad medical past. You get a lot of great care! I have the best docs around.
07-03-2008, 01:05 AM   #6
Isla
 
Well now I am going to be nervous for you. I am going to be sitting here wondering whether you are doing ok or not! Keep us updated PLEASE!!

hehehe
07-03-2008, 06:58 AM   #7
Kay
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butt-eze said:
Not to repeat what others have already done but I would like to just write down my thoughts as I begin my journey with Humira.

My husband and I met with my doctor today and discussed the pros and cons of starting Humira now before the disease progresses. While I was waiting for the doctor to come in the exam room I took an Ativan. I was starting to feel anxious about making such a life altering decision. By the time he got in there I was cool and calm.

Our current markers are:
1. My SED rate has increased from 24-37 in the last couple of months.
2. My colonoscopy/endoscopy showed mild inflammation in the colon and stomach.
3. My arthritic pain in my knees, ankles, and feet is uncomfortable to say the least.
4. I have pain and bleeding during BMs due to a fissure.

The cons:
1. I will be immunosuppressed and more susceptible to upper respiratory infections.
2. I risk the chance of developing BOOP again.

My husband, the doctor, and I all feel that we are making the best decision for me based on the current markers; which we will use to determine my progress.

I will need to get a Pulmonary Function test to provide a base rate for my lungs as I've had problems in the past.

I expect to start Humira sometime next week. My nurse gave me the Rx card that should cover my copay for the first month. I will report how that goes.
My daughter has been on Humira a year now...doing ok...but many side effects
07-03-2008, 08:33 PM   #8
butt-eze
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Yeah, I'd like to know the side effects too. It helps to look for reactions. I have the Humira in my fridge right now but I have to wait until Thursday because my doctor wants to observe me during my first injections. I wish I could just do it and get it over with.
07-04-2008, 07:51 AM   #9
katiesue1506
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Hey Amy,

I took Humira for a while, and the side effects I had were injection site itching, swelling, and redness. This can all be minimized by making sure you are properly iced down in the area you wish to inject prior to injection. I also had some headaches occasionally and I would get hot flashes when I administered it to myself (I believe the hot flashes were due to my panicking about having to inject myself). Hope that helps! And it's really not that bad at all. It does sting very much... but it goes away in 10 seconds. Oh... and mu Humira nurse told me not to forget to breathe while injecting myself... apparently a lot of people forget to breathe and then they pass out.
07-04-2008, 11:17 AM   #10
butt-eze
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Thanks Katie Sue! I'll keep those things in mind. I still wish I didn't have to wait until Thursday to start.

Happy 4th!!!
07-11-2008, 12:08 AM   #11
butt-eze
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Poke, poke, poke, poke

No! I didn't get laid.

I got my first 4 shots of Humira today in my thighs. I won't lie...it stung like hell! I got a little anxious/faint. So, I took an Ativan and then I was cool. I stayed around for 10 minutes to prove that I wouldn't have an allergic reaction.

So, that's it! I am officially immunosuppressed again.

I will share my progress and hope that the Humira doesn't nearly kill me like Remicade "might have".
07-11-2008, 01:17 AM   #12
RHOV
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I'm glad it went okay! Except for the stinging part. i hope I never have to go on Humira... I don't think I'd be able to inject myself if I knew it would hurt. But I'm looking forward to reading your updates!
07-11-2008, 01:32 AM   #13
drew_wymore
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Glad to hear it went ok Amy. I too might be looking at the Humira route myself and I'd be paying close attention to how you do.
07-11-2008, 02:36 AM   #14
butt-eze
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Glad to hear from you Drew! Seems like it has been a little while. I hope you're doing ok How did your walk go? Sorry I never got a shirt to you. I still have extras to give you one someday.

I need to sleep! What am I thinking?!?
07-11-2008, 02:49 AM   #15
Isla
 
Ya you should!! But then again, I should be sleeping too!
07-11-2008, 03:24 AM   #16
drew_wymore
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We should all be sleeping =p

I didn't make the Portland walk either but this time it was a work obligation. I was off the grid for a few because I took a short vacation to Arizona. I have an appt in the morning to see where the hell we go from here. I've slipped back into the crap zone.
07-11-2008, 11:25 AM   #17
butt-eze
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I hate the crap zone. Let me know what you guys(doc and you) decide.

The only sign of the 4 injections this morning is a small painless bruise.

I'll admit that I maybe should have told the nurse that I have a very very mild cold but I didn't want to delay starting Humira.
07-11-2008, 12:15 PM   #18
Isla
 
Amy!!!!!!!!! I will come beat you up personally if your "mild cold" ends up hurting you!!!
07-11-2008, 12:43 PM   #19
butt-eze
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3 o'clock behind the dumpsters!!! Ur on
07-11-2008, 01:13 PM   #20
Isla
 
Watch out.... this midget has Italian temper on her side. I am one lean mean fighting machine, below the waist
07-11-2008, 01:29 PM   #21
butt-eze
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Are you implying that you're going to crap on me!?! Because no amount of poo can scare me!
I'm so fat from steroids I could just squash you like a bug. You'd still be a cute pink bug though...
07-11-2008, 01:36 PM   #22
Isla
 
I should have known better than to mention below the waist to a fellow crohnie!!!!!!

HAHAHAH

07-11-2008, 01:43 PM   #23
katiesue1506
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HAHAHA!

Good luck with the Humira Amy. I didn't have any symptoms my first few shots... the itchiness, swelling and redness showed up later, so just keep an eye on that. Except... there's not much you can do for it except ice really well beforehand... and even then I still had the welts... so basically this post is useless.

oh and P.S.... if you guys have poos like my poos, I wouldn't wanna face that at all in a battle. THAT wins ANY battle... HANDS DOWN.... geez... sometimes I wonder how I make the poos I make. My mom says its because my insides are rotten.
07-11-2008, 03:10 PM   #24
butt-eze
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Actually that is good to know because I figured it would be smooth sailing from here on out. I won't flip if I get a hive now.

If we had been born back during hunter and gathering days we would have the best weapon ever with our explosive diarrhea! Although I wouldn't want to eat my kill, if you know what I mean.

BTW. Yesterday after I ate at Applebee's I had to stop at McDonald to go-I need to go right then. The two stalls were full in the ladies room so I hurried my little guy into the mens' room with me. He's in his why stage LOL
07-11-2008, 03:10 PM   #25
saidinstouch
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Good luck with the Humira, I've been on it for like 8 months now and had few if any side effects. I am going to be upping my dose to 2 pens every other week instead of 1 simply because I don't respond well to TNF-a treatments at the standard doses (Lucky me ). Hope all goes well for you though and you get some relief cause I know that I usually get good coverage for 7-10 days after a shot. Also I found the hardest shot to do were my 3rd and 4th week of shots because after the first two weeks you are used to multiple shots but also know you have to do both so you just grit and bear through it. In week 3 and 4 you don't have the motivation and for some reason those were the hardest by far, but now I just ice for 10 minutes, let the pen warmup for 15-20 minutes (I start doing this before the icing of course), and inject. Apply good pressure for 30-60 seconds on the spot after to help with bruising and you'll be good to go.
07-11-2008, 03:15 PM   #26
katiesue1506
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I could never apply pressure to mine afterwards because it just made it sting WAAY more and WAY worse than it already was.
07-11-2008, 03:39 PM   #27
butt-eze
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Yeah, the nurse applied pressure yesterday but stopped when I compalined. It's definitely better to just leave it alone.
07-11-2008, 04:53 PM   #28
saidinstouch
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I HATED doing it in my stomach. It hurt 10x worse than my legs!!! I guess to each their own, but I'm good on my legs so I avoid my tummy at all costs since I don't get injection site reactions .
07-12-2008, 05:23 AM   #29
saidinstouch
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I use the pens and they work great every time. The pain is minimal as long as you ice at least 10 minutes and warm from fridge for at least 15-20 mins.
07-12-2008, 09:29 PM   #30
milesrlv
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Humira is the next route they want to go with me I don't know about the humira pens but I am currently doing injectable pens of Lovenox (Heparin) for a DVT in my left leg. If anyone can make a comparison it would be helpful for me with regard to the injection site problems. Lovenox for me is required to be injected in the stomach area, so I am curious about the irritation and pain in comparison.
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