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Crohn's Disease Forum » Treatment » Humira/Adalimumab » About to Start Humira! Need Advice


 
08-13-2008, 12:47 PM   #1
NCWaves
 
About to Start Humira! Need Advice

Just thought I would start a fresh thread to get some insight here....

It didn't sound too good, when the nurse told me today at the doc's office that she was going to watch the drug reps video on the admin. of Humira. I feel like the guinea pig of the office. I guess they must be doing Remicade more there

Anyways....
I have to start with a dose of 4 shots(pens) followed by 2 shots the following week and then every other week a 40mg shot. Does this sound about right to start?
What did everyone do with their current useless medications? i.e. Pentasa, Imuran, Asacol, etc....
I'm waiting for the doc's answer on that one. I told the nurse that it didn't seem to make sense to continue if they did not work in the past for me. Plus the whole Pentasa pellets in the poop thing is evidence to me, it's a waste of time.

ANY HUMIRA advice would be welcomed.
Much appreciated!
08-13-2008, 12:54 PM   #2
butt-eze
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I started Humira a month ago. If you're uneasy about the nurse giving your first shots maybe you can just do it yourself. I was supposed to have my nurse show me how to give the pen injection but she ordered syringes. Therefore there was no instruction for me or my husband. The second dose should be two weeks after the first. It is correct that you get 2 shots on the second dose.
My husband just read the directions that came with the Humira and went for it.
Last week was my third dose and I injected it myself. Just figured it would be easier then waiting for my husband and getting myself all worked up about it.
As for your current meds...I would give your Rx to the doctor. Often times there are people who cannot afford their medications and will gladly take your old pills. As for discontinuing. I have stopped medications on my own before. I'm not encouraging you to do that but I recommend you just inform your physician that you discontinued them if you decide to do that.
If your pills are coming through whole then they are clearly not working. Asacol did this to me and also caused me to develop diarrhea (i.e. I'm allergic in some way).
Good luck!
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08-13-2008, 01:34 PM   #3
NCWaves
 
Thanks Amy for replying. I am actually hoping to start the Humira this Friday. I hope it works as it says it does. The nurse wants to do the initial 4 shots with me, so I might be stuck to do that. Then I am on my own. I hope its the pens and not the syringe type. I need to check into that.

Also, I just asked and I am to stop the Pentasa immediately. duh, it wasn't working. LOL. Then I am going to phase out the Imuran! Thank you!!! Can't wait for the change over to occur. I really hope this is the answer.
Thanks for your help and sharing!

Larry
08-13-2008, 02:26 PM   #4
saidinstouch
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If you get syringes the first time you can always use pens in the future. They are WAY easier to use than the syringes, especially if you hate the idea of putting a needle in yourself. Also the pain threshold is much lower because it is harder to mess up whereas the syringe you can really hurt on a bad shot(the nurse on my syringe today got a bad stick and it still hurts a bit. Luckily I go back to pens since it was a pharmacy mistake). The pen you basically ice for 5-10 minutes while the pen is getting to room temp(give it 15-20 mins) and then pull up a good chunk of skin(I try to get 1.5-2+ inches between my fingers) and then push firmly down keeping the pen vertical and hit the button. It takes all of 10 seconds and when it's done you just lift up and apply 15-20 seconds of pressure and all pain stops, not that there is usually much pain to begin with.
08-13-2008, 04:20 PM   #5
My Butt Hurts
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I think I already told you my Humira story on another one of your threads, the only other advice I have is to ice up for 20 minutes ahead of time, and press on the wound after. That will keep bruising down to nothing. I think the pens are easy, but my husband does them for me.
Also, I think there is a how-to video on www.myhumira.com .
It is really easy to do.

I'm still on my current useless pentasa. No idea why.
08-13-2008, 08:54 PM   #6
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Just curious how the Humira is covered for insurance purposes. With Remicade I pay nothing, as it is administered at a clinic. I was wondering if I would have to pay for it as a prescription if picked up through a pharmacy or could I ask to always have it injected at the clinic so that the insurance would see it as part of the proceedure. I generally have a low copay on Rx, but since I am paying nothing with Remicade I don't know if it is going to cost more if my GI doc suggests that I switch in the coming months, he has been hinting at it?
08-13-2008, 09:01 PM   #7
My Butt Hurts
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I think my copay for Humira is $33. That's for a month supply (2 pens).
It probably will depend on your insurance company.
08-13-2008, 09:03 PM   #8
mommy1st
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gadget71 said:
Just curious how the Humira is covered for insurance purposes. With Remicade I pay nothing, as it is administered at a clinic. I was wondering if I would have to pay for it as a prescription if picked up through a pharmacy or could I ask to always have it injected at the clinic so that the insurance would see it as part of the proceedure. I generally have a low copay on Rx, but since I am paying nothing with Remicade I don't know if it is going to cost more if my GI doc suggests that I switch in the coming months, he has been hinting at it?
Everyone's insurance is different. Your doctors office will probably have to pre-auth the med. They will tell you if it will go through your RX plan or your medical plan. My Humira gets mailed directly to me from a specialty pharmacy and I only pay $25.00 a month.
08-13-2008, 11:16 PM   #9
NCWaves
 
Thanks for your replies...
USELESS is right!

Thankfully, my GI doc says to need to take the Pentasa. I can stop taking that. The Imuran will be a slow but eventually discontinue as well!!

Thanks for the video link. I will take a look at that. I'm sure once I get the hang of it, it won't be bad.

I have to pick up my supply in the morning. I guess mine is a little different because I need the starter pack that gives me the 4 shots that I take on the first day. My copay for the starter pack and the rest of the month supply is $75. A little pricey, but since I will be stopping my other meds and this is supposed to be "THE ONE", then I don't mind the co-pay. When you have bowel obstruction pain, you would pay triple that to make it go away!!

I'll let you know how it goes this Friday when I starter up!
I hope I am getting the pens too, otherwise I'll need to get that switched fast.
Thanks.
08-14-2008, 01:34 PM   #10
skinzdogg
 
I got a denial letter for Humira and it was almost $5000.00!!! And that was the starter kit and 4 pens I believe. You gotta love pharm companies. My doc wants me to start it or remicade. I have a small bowel obstruction(actually several obstructions with one being 100 times worse). The only thing is we don't know what is inflammation and what is scar tissue. Small bowel follow thru next week. And WOOHOO start 40mg of Pred down from 60 tomorrow. Sorry to whore your post.
08-14-2008, 09:12 PM   #11
mommy1st
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skinzdogg said:
I got a denial letter for Humira and it was almost $5000.00!!! And that was the starter kit and 4 pens I believe. You gotta love pharm companies. My doc wants me to start it or remicade. I have a small bowel obstruction(actually several obstructions with one being 100 times worse). The only thing is we don't know what is inflammation and what is scar tissue. Small bowel follow thru next week. And WOOHOO start 40mg of Pred down from 60 tomorrow. Sorry to whore your post.
Sorry to hear about the denial but your doctor should be able to write a letter explaining that nothing else works and then they should approve it. Call your doctors office and see if they will do that for you. Good Luck
08-14-2008, 10:26 PM   #12
skinzdogg
 
I guess I was only denied cuz forgot to do the TB test so should be all set. Thanks.
08-14-2008, 10:29 PM   #13
butt-eze
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I think for some insurance companies they prefer people to try remicade before humira. They may be a factor in why they denied humira. It's so stupid that insurance companies can dictate a course of treatment over what a medical specialists determines is the best treatment. Gotta love our messed up healthcare system.
08-14-2008, 10:34 PM   #14
skinzdogg
 
Butt-eze look up
08-14-2008, 11:57 PM   #15
NCWaves
 
skinzdogg said:
I got a denial letter for Humira and it was almost $5000.00!!! And that was the starter kit and 4 pens I believe. You gotta love pharm companies. My doc wants me to start it or remicade. I have a small bowel obstruction(actually several obstructions with one being 100 times worse). The only thing is we don't know what is inflammation and what is scar tissue. Small bowel follow thru next week. And WOOHOO start 40mg of Pred down from 60 tomorrow. Sorry to whore your post.
I get a discount at the pharmacy in the hospital that I work at, but yeah, the starter pack which is 6 injections split up as 4 followed by 2 more in 2 weeks. The cost was $4200, and like I said my Cigna copay was $75.
Luckily I didn't have to jump through any hurdles and the approval was done by my GI office. I've been on Imuran for almost a year(200mg) and also Pentasa for almost 3years, neither of which have done anything, so perhaps the insurance co. looks at what your current meds are and condition.

I hear ya though.... Those small bowel obstructions are extremely painful!!
My last one was back on July 4th! I was hospitalized in April when I almost passed out from the pain of the obstruction.

Ask your doctor about CT enterography. Its a new type of CT scan that can give the doc a more visible picture to differentiate from scar tissue vs active inflammation or disease. It's not a big deal to drink the solutions and take about 15mins worth of scans. I had it done last week which clearly showed enough inflammation there to warrant the use of Humira.
I could have done Remicade, but I wanted to do Humira to avoid the trips to the office for 2hrs of infusion. Plus the idea of Mouse proteins didn't excite me which is what part of the Remicade is made up of.

Good luck to you, I hope you get some relief soon. I'll let you know how the Humira works out for me. My first dose is tomorrow at 730a!!

Last edited by NCWaves; 08-15-2008 at 12:02 AM.
08-15-2008, 11:40 AM   #16
NCWaves
 
If I screamed do you think anyone on this board would hear me!

So I show up at 730a, already to start my Humira today, even despite the fact that the pharm screwed up and only had syringes to give me, no pens.

Well, I'm pumped up all ready to get stuck 4 times! and WHAM!#$(*[email protected]
"If you did not have your TB screened in the last 6 mos we'll have to do that first before starting the Humira". I wanted to just knock her out. That song, mama says knock you out came rollin' through my head at that point.
I drove home so pissed and discouraged, you have no idea. It's going to be a long weekend.......

Now I'm rescheduled to start this Tuesday.

DOES ANYTHING GO OUR WAY, JUST ONCE???
Haven't us Crohns patients sufferred enough!!! Just once, can we catch a break with this disease.

Sorry for venting, but I am reaching my breaking point with this.....
08-15-2008, 12:23 PM   #17
Isla
 
Unfortunately you will meet that point on a regular basis. I am sorry to hear that you are getting so frustrated, it sucks
08-15-2008, 12:23 PM   #18
saidinstouch
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Its alright NC, at least you are ready to start soon. Your doctor should have been more on top of the TB test since it is 100% required to start these medications. Hopefully that is the last bump in the road for you and starting Tuesday evening/wednesday you'll start feeling a lot better!
08-15-2008, 02:23 PM   #19
skinzdogg
 
Yeah same happened to me. Stupid TB test. I know I dont have it. Anyone have it and ever take Remicade or Humira? Will that kill you?
08-15-2008, 02:37 PM   #20
saidinstouch
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I think it puts your life in serious jeopardy if you do because your body already has to fight fairly hard in order to keep you alive from the infection. With a suppressed immune system it makes the infection that much worse and harder to erradicate.
08-16-2008, 12:31 AM   #21
NCWaves
 
skinzdogg said:
Yeah same happened to me. Stupid TB test. I know I dont have it. Anyone have it and ever take Remicade or Humira? Will that kill you?
Stupid test isn't the word. I've been trying to chill out this evening and not think about what could have been by just doing the test ahead of time.
Someone dropped the ball at the office.

saidinstouch is right by the explanation of your immune system being unable to fight off TB.

Thanks guys for your support. I will try to stay calm until Tuesday then and hope for the best. I have had some distention and uneasy feeling all evening, so I hope it doesn't develop into anything worse.

Have a good wknd.
08-22-2008, 08:13 PM   #22
teeny5
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I heard you can die if you get TB that is why they are such sticklers about you getting tested before going on the medication. I guess if you have TB in you and didn't know it can "wake it up."
08-26-2008, 05:44 PM   #23
MCPayne
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I may be starting Humira in the coming month or so, but I just have a question that I hope some of you will be able to answer.

Since there is a needle in the pen, I have to assume that it will sting a little when I inject myself? I've had numerous blood tests done over the years, so I figure it can't be worse than that. I guess that's why people suggest to numb the area with an ice pack before hand.
08-26-2008, 06:04 PM   #24
My Butt Hurts
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Humira has a pretty sharp sting. Worse than a blood test, but it's only about 10 seconds, and so worth it if it works for you. It's not that big of a deal, you can handle it. I wouldn't recommend not icing. You can watch a video at www.myhumira.com and it takes you through step by step. I think the pen would be easier than the syringe, but I haven't done the syringe.
08-26-2008, 06:16 PM   #25
MCPayne
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Okay, thanks. I actually saw the video on another site, and for those that are interested, this link should take you right to the page with the video. Once I get the TB test and the authorizations and start the injections, I'll try to post to let everyone know how it's going.

http://www.humira.com/CrohnsDisease/...a/Default.aspx
09-01-2008, 07:35 PM   #26
MCPayne
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Anyone know if they typically dispense one or the other more often? What I mean is when I drop my prescription off, should I tell them that I would personally prefer the pen, or will they automatically assume that it's the pen?
09-01-2008, 07:42 PM   #27
My Butt Hurts
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You need to specify which one you want.

I found that I couldn't just drop my prescription off either. My local pharmacy (though HUGE) didn't deal with Humira. I have to have it shipped from Florida - a company called Curascript.
09-04-2008, 07:50 PM   #28
MCPayne
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OK, thanks. There's about three pharmacies near where I live, so hopefully one of those can order Humira. My doctor said that once I drop it off if it needs authorization, which it probably will, the pharmacy will call the doctor's office and they'll work it out. I am assuming by "they" that they are talking about the insurance company, the doctor's office, and Abbott.

Also, this is probably something I need to discuss with my doctor, but what do I do with the meds that I am currently on once I start Humira? I've got a couple months worth, because I usually mail away for a three month supply, but for Humira will probably just go to the pharmacy since I work full time and the Humira if I mail away will just be sitting out from the time the mail comes until I get home from work.
09-05-2008, 01:33 AM   #29
skinzdogg
 
Just got my TB test on Tuesday and went back today. No TB which was obvious but ins co. wanted it done in order to approve Humira. Seeing doc tomorrow to plan surgery hopefully. I just want this obstruction OUTTA ME!!! AHH! LOOK AT MY PREDNISONE FACE! Down to 20mg a day and still growing!



Last edited by skinzdogg; 09-05-2008 at 01:36 AM.
09-15-2008, 07:24 PM   #30
MCPayne
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Just had the TB test today, and will go back on Thursday to get it read, which it should be negative, as I can't even tell where my doctor did it even though he made a pretty good sized bubble. It took me 15 minutes to drive home, which is when I realized that the bubble was gone. Is this going to pose a problem in a couple days when I go to get it read? Is this going to be a problem when I go to get it read if my doctor can't even tell where he did the test?

I know it's probably different for everyone, but on average, how long does it take to get Humira approved by the insurance company? My plan is to just fax the note from my Primary Care Physician to my GI, unless he needs to see the original, then I'll mail it, and after that I'm planning to see if I can drop off the prescription at one of my local pharmacies around here.

Last edited by MCPayne; 09-15-2008 at 08:17 PM.
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