Amy & Humira

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butt-eze

butt-eze

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Joined
Dec 28, 2007
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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.
 
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!
 
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.
 
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.
 
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
 
Keep Me posted - my daughter has been on Humira alsmost a year now.

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.
Click to expand...

My daughter has been on Humira a year now...doing ok...but many side effects
 
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.
 
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. :)
 
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!!!
 
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".
 
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!
 
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.
 
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?!?
 
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.
 
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.
 
Amy!!!!!!!!! I will come beat you up personally if your "mild cold" ends up hurting you!!!
 
Watch out.... this midget has Italian temper on her side. I am one lean mean fighting machine, below the waist :)
 
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...
 
I should have known better than to mention below the waist to a fellow crohnie!!!!!!

HAHAHAH

:roflanim:
 
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. :duh:

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. :)
 
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
 
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.
 
I could never apply pressure to mine afterwards because it just made it sting WAAY more and WAY worse than it already was.
 
Yeah, the nurse applied pressure yesterday but stopped when I compalined. It's definitely better to just leave it alone.
 
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 :D.
 
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.
 
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.
 
The coumadin got me sick. So I was taken off of it and put back on Lovenox. In reply to Pen I have no problem with the needle either but the Lovenox does burn a little and for Pete's sake don't stick yourself in a bruise or a Heparin bump. Wow that smarts.
 
Glad to know its going well so far Amy. Hopefully it'll keep you in good health and get you off those damn steroids.
 
What exactly is a DVT out of curiosity? Also the Humira pens don't really hurt too much. Sting for about 10 seconds total once the liquid starts to be injected and then the pain sort of vanishes.
 
I'm watching miss universe and USA just fell. Almost as embarassing as crapping your pants!

Anyways, I haven't noticed any positive changes from the Humira but it has only been 3 days. The doctor said I could notice something within a week. I sure hope the joint pain goes away soon.

:)
 
Ya I saw her fall on her butt as well... not suprised she didn't get in the top 5!! Hahahaha
 
I hope your joints feel better soon!

But my really burning question is this: How on earth did Miss USA fall???
 
Well RHOV. She was just announced and ready to prance around in her pretty dress when she slipped and fell right down on her pretty bum. I felt really bad for her. She tried to play off the emberassment by clapping her hands in the air to the music.

The funny thing is the Miss USA Pen mentioned was in last years. Two years in a row, same scenario. I'd say the Miss USA next year might want to put some sticky stuff on her shoes.
 
butt-eze said:
Well RHOV. She was just announced and ready to prance around in her pretty dress when she slipped and fell right down on her pretty bum. I felt really bad for her. She tried to play off the emberassment by clapping her hands in the air to the music.

The funny thing is the Miss USA Pen mentioned was in last years. Two years in a row, same scenario. I'd say the Miss USA next year might want to put some sticky stuff on her shoes.
Click to expand...

Miss USA? I thought it was Chevy Chase in drag.
 
Chevy Chase wouldn't have fallen down. Men Know they need to scuff up new shoes :)
 
Last edited:
My next (second) dose of Humira is on Thursday. So far I haven't noticed a positive or negative change. I still have pain, bleeding, and heartburn.

I'm frustrated because my husband thinks the stress of my friends hospitalization is causing a flare. I started flaring before all of this. My sed rate was already up, etc. Granted it may be making it worse but I don't like being made to feel like I could have somehow avoided it. Besides, how could I not be stressed over my friend nearly dying and then ending up with both feet, and one hand amputated?
For those of you following I'm talking about Carol. She has UC and has undergone 6 weeks of pure hell after giving birth. She developed DIC and strep pneumonia. She'll make it now but I have been understandably worried about her. http://www.sccsdecker.blogspot.com

He tells me I need to focus on not stressing. How do I do that!?!
 
I was a total whimp

Thursday was my second dose of Humira. Two shots...I was such a baby!

I assume I was just all worked up because I knew how bad the shots would sting. Also, my husband was injecting me (don't get dirty people!) and he wasn't trained to give the injections. As he sat and read the insert on how to do it my anxiety level increased.

During the first injection I just said, "Owe, owe, owe, owe, owe"

During the second injection I started crying. It stings terribly bad. I also think that the whole concept behind what I'm injecting into me overwhelms me. I'm perfectly fine now. Very small bruises. No pain, no side effects.

When I met with my Pulmonologists yesterday she wanted to take precautions because of my past lung issues-BOOP. So, next week I will get another Chest CT Scan. I will have a Pulmonary Function test in October. And next weekend I will do my second sleep study to determine if C-pap machine will provide me with better sleep and therefore more energy.

I'm stoked to have doctors that take such good care of me. I'd rather them be over-cautious than just waiting until I get sick.
 
I hope all goes well for you and it is very nice to hear that your doctors are taking good care of you. Good luck and best wishes.
 
I just received a print out from my clinic that shows how much my insurance will be billed for my first Humira injection....$7,300 + I sure hope they cover this!!! Yikes!
 
I've had a very very low grade fever the last few days. It's only 99 + Usually people shouldn't worry until it's 100-101. It's just that I've noticed that my temp has been slightly elevated.
This causes me a little concern because a slight fever is what led to me discovering BOOP when I was on Remicade. The doctors still can't say the Remicade didn't cause the BOOP. Luckily I have my CT Scan on Thursday. That will catch anything if need be.
 
butt-eze said:
I just received a print out from my clinic that shows how much my insurance will be billed for my first Humira injection....$7,300 + I sure hope they cover this!!! Yikes!
Click to expand...
Wow that Humira bill is a stinger. I hope all goes well with the elevated temperature. Good luck.
 
That's not very nice! It's not like it would hard to get a dog from Thunder Bay to Washington....ok, maybe it would. Besides my husband would kill me.
 
Ahhhh.....I had a Golden Retriever growing up. Her name was Alitia. I loved her. I do want to get a smaller dog someday for me son. I don't plan on having more kids because of money and not needing to endure a high risk pregnancy.
 
F*ck!!!! I just got a denial from my insurance company on my Humira. This means I might owe my doctors office nearly $7,000. I'm freaking out! What if I really have to pay this!?! I truly hope I can fight and win this. Our healthcare system sucks my left big toe!!!!
 
That's what we don't get...insurance companies are so unclear here. But why would the hospital have released the Humira to my nurse if the insurance didn't approve it??? What a freakin mess!
I'll keep you in the loop :)
 
The battle rages on. I have been bumped back and forth from my doctors office to my insurance company over a mistake I did not make.

Today is August 4, 2008. My nurse just now finished my Prior Authorization on my Humira. Which means the insurance company is unable to back date the PA far enough to cover my first injections on 7/10/08. What a freakin mess.

From my nurses tone of voice I could tell she knew this all rested on her shoulders. I will continue to fight this and win!

The thing that bothers me the most is that the billing office at U of WA is not very helpful. They just like to pass this problem off on other people instead of just fix it. I've done medical billing before and know the process.

I've now had to find the correct CPT and ICD-9 codes, print them, and fax them to my nurse so she can address this. Why should I have to do their job?
 
Any new news on your insurance battle? I just started Humira about 2 weeks ago, unfortunately, I haven't had any relief from my flare. Hopefully it starts working soon.

I also just got my first career job, now that I am graduated from college. Hopefully I can make the transition to their health benefits from mine smoothly.

Also, I used the pen to inject. The first time was tough to "press the button" but it didn't hurt, all it did was cause a warm sensation at the point of injection. However, the fourth one did hurt because I think I hit a vein.
 
At this point it is up to my clinic to determine if they made a mistake in their billing. If so, they will need to correct it and resubmit it to my insurance company. Luckily, I saved a message from my nurse where she said she thought she had taken all the necessary steps. She blamed it on the hospital pharmacy and/or herself. I'll make sure that message sticks around until the billing issue is settled.

With your insurance...make sure you do not allow a gap in your insurance coverage. If there is a waiting period with your new job make sure you pay for your original insurance until your companies benefits kick in. A gap in coverage can mean you have a lengthy waiting period for previous conditions to be treated.

You may not noticed relief right away. Hang in there!
 
I hope you win Amy. Its so wonderful when someone else screws up and doesn't want to take responsibility for it.
 
I am new to this forum. I am starting on Humira in April. Just received my starter pack today and was a little nervous when I saw the "pens". Aside from the possible burning, itching and swelling of the injection site...anyone out there suffer from any other side effects. Weight gain? That's what I worry about the most. I hated being on Prednisone for that reason. I know from reading your blogs that I should ice the area for 10 mns prior to injection and warm the pens prior to injection.

Any other advice?
 

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