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Would Like to hear Humira results...

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Crohn's Disease
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Posted 1/15/2008 6:51 PM (GMT 0)
Hey everyone,

A couple weeks ago, I posted about how well I was doing on prednisone. I had achieved complete remission from all of my Crohn's symptoms, including rashes and joint pain. The very next day I started having very bad side effects from the pred. They are so bad that I have left two (as yet unreturned) phone messages to my GI asking for instructions on how to get off the pred as fast as possible. I am down to 10 mg. per day of pred, and the D and cramps are back.

I have an appointment with my GI next Tuesday. I am hoping to discuss the possibility of starting Humira with him. I have heard that there are certain blood tests that need to be performed in order to see if you have TB and/or Hep B antibodies, as well as liver and kidney function tests. I'm hoping to get these tests done this week so the results are back by my appointment next week. I'm anxious to get going because I cannot return to work until I have achieved and sustained remission for thirty days after starting any new Crohn's med (I'm an airline pilot).

So the questions...

Are the blood tests mandatory before starting on Humira, or are they done more as a monitoring thing after you've been on Humira for a while?

How are you doing on Humira? How significant of an improvement have you seen?

I am very lucky in that I have a very mild case of Crohn's. One of the most mild cases my GI has seen. However, in order for me to return to work, I must have my Crohn's in complete remission. This is the only reason why I would even consider taking such a high-tier medication (with such nasty potential side effects). I need to get the best control possible of my Crohns. My career is at stake here.

I'd love to hear as much as possible about Humira.

Posted 1/15/2008 7:16 PM (GMT 0)
I'm sure somebody will be along soon to talk about Humira. There's a lot of info about it on the web site www.humira.com, including the following: 

"Tell your doctor if you think you have an infection, are being treated for an infection, have signs of an infection (such as a fever, cough, or flu-like symptoms), have any open cuts or sores on your body, get a lot of infections or have infections that keep coming back, have or had hepatitis B infection, take the medicine Kineret (anakinra), have TB or have been in close contact with someone who has TB. Your doctor should test you for TB before starting HUMIRA. If your doctor prescribes any medicine for the treatment of TB, you should start taking it before starting HUMIRA and take the full course of TB medicine prescribed.

Also, tell your doctor if you have any numbness or tingling, or have a disease that affects your nervous system such as multiple sclerosis, have heart failure, are scheduled for any vaccines or major surgery, are pregnant, become pregnant, plan to become pregnant or are breastfeeding."

Meanwhile, was just wondering whether you considered Imuran or 6mp before jumping to Humira? The blood test for Imuran/6mp is the TPMT test.

If your Crohn's is in the terminal ileum, Entocort might also be worth a try. If it works, Entocort can help buy time while waiting for Imuran or Humira to kick in.

Posted 1/15/2008 7:39 PM (GMT 0)
njmom, thanks for the info... yeah, I think I've read every word on the Humira.com site at least twice. : )

According to CCFA.org, the Imuran and 6mp class immunomodulators take three to six months to work, which means combining them with other drugs/therapies in the interim. It really complicates matters concerning my career. It's a bit complicated to try and explain here, but the Federal Aviation Administration regulates airline pilot's health. We must pass physical examinations every six months, and have any treatments for any diseases approved and monitored. Imuran would really make a mess out of this process, and Humira is much easier to get approval for. Here's a quick example: you cannot fly for 24 hours after a remicade injection, yet you can fly four hours after a Humira injection. Most Crohn's medicines require a thirty day period of use before the FAA will let you fly while taking them, others have an even longer wait. Imuran is one of the ones that requires a much longer wait.

I have been on Entocort and Pentasa for the last three months, with some benefit. I went from 12 crampy ones per day to around four. I gotta do better than that to get back to work.

So, I'm pretty much set on trying to get on Humira. It just makes the most sense for me in my situation... which is why I'm dying to hear every bit of info I can get on it.
Posted 1/15/2008 8:26 PM (GMT 0)

I started Humira about 6 weeks ago. All I had to do was a TB skin test. This took about 2 days.. I had to get the stuff injected in my arm and then had to have it checked 2 days later. The test was the easy part. It was done fairly quickly.

The hard part for me was fighting with the insurance company to cover it. They had the idea that I shouldn't get on Humira unless I tried Remicade first and failed. I had been on everything else - prednisone, pentasa, imuran, flagyl - and it all pretty much wore off after time. I have a young child, and my doctor didn't see me being able to go into the facility to get the infusions. They finally covered it after some hard work on my GI's part. Honestly, it took about 2 months from the time my GI decided to put me on it until the time I took my first injections.

Once the medicine was approved, I had the starter kit delivered to my door in about 3 days. I have a few little side effects (being thirsty and headaches every once and awhile), but I've felt better that I've felt in a long time.

The imuran kept me in full remission for about 4 years, but it did take about a month to start working. I had no side effects from that.


Posted 1/15/2008 9:24 PM (GMT 0)
All I had to do was the TB skin test for free at a local health clinic with doctor's prescription note.

I started Humira last week with 4 "loading doses" and haven't noticed any improvement. But my only symptoms right now are diarrhea and a little pain. I had a resection last November which I think is responsible for the persistent diarrhea but I'm hoping that somehow Humira will help this. It was a colon resection and not the kind that usually causes short bowel syndrome.

It's only been a week so I'm still holding out hope. They said it could take as long as 3 months to see results. I only had side effects the night I injected. I felt a little nauseous, got a headache, and had night-sweats but the next day was fine.
Posted 1/15/2008 11:28 PM (GMT 0)
mimik81, thanks for the information. I have a feeling I'm going to be in for a fight with my insurance company as well, since I want to skip Remicade and go straight to Humira, too. Trying to work around my flying schedule for Remicade would just be impossible. I hope my GI will go to bat for me like yours did. I'm glad to hear that it's helping you. You mentioned that the Imuran took about a month to work... how long for the Humira? Thanks again for the information! : )

Driver37, I'm sorry to hear that you haven't shown any improvement yet. Sure hope that it's just because it hasn't had time to take effect yet. Get better soon!
Posted 1/16/2008 12:49 AM (GMT 0)

I just had to do a TB test,but have monthly blood work.I started Humira three months ago and my scope showed major inflammation,just had a scope last week,and the inflammation was gone,it was gone so much that my GI was able to stretch my stricture!! I had no problems with my insurance,and only have to pay a $20 copay each month.

Good luck :-)

Posted 1/16/2008 1:35 AM (GMT 0)
I have been taking Humira for about 4 months now, my D went from a dozen times per day to 2-3x per day, which is a total blessing ;)
I have to take my Humira in conjunction with 6mg Entocort daily because the Humira doesn't control my inflammation like Entocort does...seems I am steroid dependent...yippe, right? So the Humira controls my diarrhea and the Entocort controls the inflammation...take either one away and I'm a wreck, but together they work really well for me, better than any other meds I've taken for my CD.
My GI does monthly bloodwork to make sure all is okay and I'm having a colonoscopy and endoscopy tomorrow, will know more then about how my insides look...haha.
You should definately talk to your GI about trying Humira, and maybe switching from Prednisone to another type of anti-inflammatory since you have such bad reaction with Pred.
Good luck to you, hope I helped!
Posted 1/16/2008 2:40 AM (GMT 0)
Wow, thanks everyone for the great information! : )

Looks like I'll definitely be asking to try an Entocort, Pentasa (both of which I'm currently on) and Humira tri-fecta. : )

I was so disappointed by the prednisone side effects; it was working sooo well for me as far as controlling the Crohn's symptoms. I've been using Flonase to keep inflammation in my sinuses under control for a long time. The prednisone even helped a bunch with that, too. Very discouraging to have such bad side effects. I'm just really hoping that Humira helps as much as the pred (without the side effects, of course).

Edit: Oh, and I forgot to mention... my GI's medical assistant finally called me back (God bless her). She had me go get a TB skin test done today, so I'll be prepared to start the next round of treatment at my next office visit one week from today. Well, six days, 1 hour, 17 minutes.. not that I'm counting or anything.

Posted 1/16/2008 3:08 AM (GMT 0)
I have had wonderful, amazing, fabulous success with Humira! Seriusly, it has put me in my first and only remission for 16-plus years with Crohn's. I have had a severe case of it too. I am now only on Humira and all the way down to 4 Asacol (from 12) a day now. I had previously been on every medication possible for Crohn's with only mild success. At one point I was taking 32 pills a day. I took me about 3 months to get it under control, but they didn't do the starting-loading dose thing when I started it. I just took one shot and then had another every two weeks since then. I had a TB test only. I hope it works for you! Let us know.
Posted 1/16/2008 5:13 PM (GMT 0)
I was able to get the flare under control with tons of prednisone when I was admitted into the hospital in November. I weaned off, but was still taking it when I started the Humira. I had little discomfort when I started my first found of shots, and I've since gotten of the prednisone completely. I feel fine now. No pain or anything. I can't tell you now long it took to work b/c I was doing a lot better when I was on the prednisone. All I can say is that I feel wonderful these days. Good luck!

Don't worry - I could down my days until I get my Humira shots! It's kind of crazy that I can't wait to "shoot up" every other week!
Posted 1/16/2008 6:35 PM (GMT 0)

My son is on Humira.  We did not have any trouble with our insurance, except we had to get prior authorization.  He had failed other immunosuppressants, but was never on remicade.  After first injections, he showed some improvement.  After second injection, quite a lot of improvement.  In less than three months his sed rate has gone from 40 to 2 and labs are totally normal, which is unheard of.

He did have to do a TB test.  You cannot start Humira if you show signs of TB.   

Posted 1/16/2008 8:49 PM (GMT 0)
Ok u guys iv been peaking in this post as I just started humira 2 weeks ago. Second dose is due this friday. But u guys haveme slightly worried.

I was hospitalized when the gi decided to try humira, but I did NOT get a tb test. Do u guys think that there is a reason that they didn't give me one?

Also I haven't had any bloodwork since, should I be?

Lastly, I haven't been feeling too well since I've been released from the hospital about a month ago. I don't know if its a flare or not, but I have not fully regained my strength. I'm usually tired, but not sleepy. And I'm having pain most of the time. Are there any tests that determine whether or not the humira is working?

Are there n e questions I should ask the gi about my humira?
Posted 1/17/2008 1:21 AM (GMT 0)
praying4healing : I've heard it can take weeks for the Humira to work. Lucky for me, the I was still on prednisone when I started the injections, so I was already feeling somewhat better. I just started the maintenance doses, and I feel great.

As far as the bloodwork, I wasn't told about having to get any labs anytime soon. I am supposed to get with the GI in a few months for a checkup. I did get the TB test. I'd ask the doc about that one. I've heard that it's pretty much the status quo to get that test done.
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