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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira... my trek (a diary)


 
12-06-2007, 08:03 PM   #31
jobengals
 
katie have you always gotten these reactions since your first injection? I've gotten 3 shots so far and haven't felt any after effects, besides a good 3 minutes of stinging in the site of injection. And sometimes might feel a little hot, but that's it for me
12-06-2007, 08:06 PM   #32
katiesue1506
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I get the hot feeling sometimes too... but I didn't always have these big itchy welts... I think it took maybe a month or two of injections before I noticed them.
12-07-2007, 12:15 AM   #33
Sojourn
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How are you doing other than the big welts on the skin? You haven't mentioned much lately about your digestion or overall well-being. Also, how severe were you when you started? You may have mentioned in another thread but I don't remember if you had surgery, or what.

My GI is giving me the option of Humira if the insurance approves it.
12-07-2007, 10:31 AM   #34
katiesue1506
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Digestion has been ok... I mean I still have my bad poo days (don't we all?) and then I'm kinda battling a fissure problem right now, so that's no good... but as far as pain, I don't usually had it until it gets time to take another shot (around 3 to 4 days prior). Also, there's occasionally that random food that messes with me, but it changes each time I eat them.

As far as how bad I was before I started; well I was in complete remission prior to Humira because I began Remicade and had three of those infusions. I switched because my doctor was worried about the cost and it was a brand new treatment in his office so he was all gung-ho about it and I just trailed him. However I started Remicade because I wasn't responding to Imuran or Prednisone (I had been on them for around 8 months and my blood counts were still down).

Thanks for asking! If anyone has any questions based on any part of my experience with anything, I'm a pretty open person about all of this, so just ask!

Sojourn: Yeah it was a long process of trying to see if my insurance would cover it. I had to talk to the Humira people a whole bunch. But I was approved as a 40 dollar copay for a 3 month supply (6 shots).
12-08-2007, 03:12 AM   #35
saidinstouch
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Yeah the cost of this stuff is great, I'm paying $50 for a 2 month supply as compared to a bill of $25k to my insurance for a remicade infusion every month.

How have your injection site reactions been doing? Have you tried benadryl and doing something like lower left, lower right, upper left, upper right in a circle if you don't want to try your stomach? I hate my stomach too cause it hurts a lot more I found when I tried it. Also do you ever have any hesitance before you give yourself the shot, cause I still am really hesitant about just pushing the damned button because of the loud pop. It really doesn't hurt that bad compared to the stomach cramps I have without it, but it takes me 20-30 minutes to finally just push the stupid button.

The good news with Humira is that studies with it have shown some promising results against abscesses and fistulas. For me that would be nice as I've had an open and draining fistula for over 2 years now and hopefully the Humira will do better than the remicade in the 1.5 years of super high dose that I was on.

It's nice to have someone else that is at about the same point in their treatment with Humira to compare to. Hopefully your injection site reactions go away or don't bother you too much...otherwise you're going to have to go for the stomach according to my communications with a Humira nurse. Good luck!
12-09-2007, 11:51 AM   #36
TammySue62
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Well I had my first needle or should I say 4 needles on Fri. Man that stung like crazy. Not the needle but the 10 seconds or so that the drug takes to administer into you. I dont know how in the hell that I'm gonna self inject the next ones in 2 weeks. I hate needles.You think that I would be used to them after all these year of having CD. News flash i'm not. I almost jumped off the table when she stabbed me in the stomache.How in the hell am I gonna do this?Go to her office every 2 weeks? Mabe

Tammy
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12-09-2007, 11:55 AM   #37
katiesue1506
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the hardest injection is the second set of two... because you know what they feel like from the four that you took before, and you know you have to endure it twice in a row.

It's not too bad after that though because its like a chore you just gotta do. Also... I've found that it doesn't hurt as bad in the legs, of course I have some meat down there so maybe thats why

So she didn't make you self-inject yourself the first time? My nurse MADE me inject ALL four in a row by myself. It was horrible.
12-10-2007, 02:17 AM   #38
saidinstouch
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I had to do all four of my first ones by myself also because the medicine was from a pharmacy not part of the hospital I went to for assistance. The second two were the hardest and I cheap shotted myself (i.e. did a gradual push on the button and had no clue when it was gonna trigger). I have found being aggressive and going for it hurts the least, but its a huge psychological barrier for me. It does get easier with time and practice or you can in fact go somewhere for the shots till you think you can do it. After a while you realize the pain is only bad for those 10 seconds and then you forget about it. For me the hardest part is the loud pop expectation, other than that I can handle the pain cause its much less than not taking the medicine.
12-10-2007, 10:54 PM   #39
Sojourn
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Thanks for the info. I hope to find out more from my GI this Wednesday if I can get out of Kansas City. Major ice storm coming through.
12-10-2007, 11:59 PM   #40
AbstractDonut
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Hope you don't get caught, 600,000 without power in Oklahoma.
12-11-2007, 11:59 AM   #41
jobengals
 
since i was considered "in remission" on prednisone when i was given the humira option, they started me out with one shot. four sounds like hell. I'm still fighting insurance cause they don't wanna pay for this "experimental" drug
12-11-2007, 01:21 PM   #42
katiesue1506
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Well the normal treatment for Humira is kinda like Remicade in the fact that you have to jumpstart your body to it... I think it was 4 shots the first time, 2 weeks later was two more shots, and then after that it was just one shot every other week.
12-17-2007, 12:12 PM   #43
jobengals
 
Got my fourth shot two days ago. Three easy minutes of stinging, and i've been feeling really good the last month or so. Four days ago I discontinued the prednisone finally ... it's nice watching my skin finally effing clear up. I still haven't gotten any welts, or felt hot at all afterwards, just a sore leg muscle for 10 minutes or so and I feel right as rain.

this seems to be the only other medicine besides the steroids that works for me.
12-20-2007, 08:13 AM   #44
TammySue62
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Here goes I get my first visit from the nurse this morning. Two needles.

Then afterwards I have to do it myself. I dont no if I can. I am already tensing up about the nurse coming and shes not even here yet!

I can and have and still had to endure alot of pain over the years but I cant overcome the feeling of getting stabbed by needles. I tense up so bad that I even clench my teeth.

What do I do? Go to a clinic every time I need Humira injection?

How about katiesue can give it to me........ LOL


Afraid in Canada Tammy
12-20-2007, 09:19 AM   #45
katiesue1506
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HAHAHA... yeah Tammy, I'll travel a bit northward to inject you every other week... only if you inject me! HAHA


SO... hi all... today is the day. It's a good thing too because I've been feeling bad. I'm going to take Benadryl before I shoot up today though so hopefully that helps the injection site reaction.

Other good news... I put a new network card in my laptop... and it fried the motherboard. So now I'm waiting on Dell to send the parts and a technician. I told them they could just send the parts and I could fix it (well my boyfriend) but they wanted to send a technician for some reason.

OK... I'm gonna go inject myself... I'll chime in later as to how it goes.
12-20-2007, 03:36 PM   #46
Sojourn
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I got insurance approval this week and the order was called in today so I don't know when I'll be getting it. Hopefully, before Christmas, as a Christmas gift if it works for me. I don't have any problem with needles so I told them I was okay with doing the first loading doses on my own.
12-21-2007, 03:31 PM   #47
saidinstouch
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Sojourn, most pharmacies can get the medication in within 1-2 days so I wouldn't be surprised if you could in fact start it before christmas. Hopefully you got the pens because at least then you just push a button and the rest happens for you as compared to the syringe where you actually have to put it in your skin...I could never ever do that.

Anyway today is my injection day, at least it is sunny in so Cal today.
12-21-2007, 06:43 PM   #48
katiesue1506
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So I took the benadryl... and the welt itchy thing is actually bigger this time... its the size of a frozen waffle. on my leg.... I dunno anymore.
12-22-2007, 02:56 AM   #49
saidinstouch
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It sounds like you need to give your legs a break . I would talk to your GI doctor about injection site reactions, but you might have to do your next couple shots in your stomach to give your legs a month off. It hurts a bit more but ir really isn't that bad compared to a reaction.
12-22-2007, 10:36 AM   #50
jobengals
 
Damn Katie I'm sorry to hear that. I've yet to experience any sort of welt reaction ... try more painkillers before/after the shot ... I duno. Do you ice up your leg first? Every shot for me so far has gone in the same area in my left thigh, and i haven't gotten any bad reactions.

saidinstouch said:
Anyway today is my injection day, at least it is sunny in so Cal today.
Southern Cali .... I envy you, to a point you can't even imagine my friend.
12-22-2007, 01:43 PM   #51
saidinstouch
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I'm normally in nor cal going to school in Santa Cruz, but winter break in so cal is nice. Also I finally actually did my Humira injection without hesitation and it was way easier and hurt a lot less doing it that way.
12-26-2007, 02:33 AM   #52
Sojourn
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It looks like it will be arriving on Thursday. I'm having it shipped to my parents house since I will be in Des Moines and it has to be refrigerated right away. So I will probably get it on Friday and don't know if I'll feel like injecting that day. So I'm projecting that I will start on Saturday. Any last minute suggestions?
12-26-2007, 09:11 AM   #53
katiesue1506
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Well... with the preloaded pens, just go for it... just do it. Don't hesitate or else it will become worse in your head. good luck with your first doses!
12-26-2007, 11:33 AM   #54
Sojourn
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Thanks , yes, it will be the preloaded pens.
12-26-2007, 05:39 PM   #55
TammySue62
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I couldnt wait for you any longer katisue,so I got up enough nerve to do it myself. HaHAAA!!!!!.

Hey did you no that there is a toll free number(1-866-8HUMIRA) YOU CAN CALL 24 HRS. a day.

I am still having problems with my teeth aching now and then,and my hair is still falling out in handfuls.I mean alot more then normal. I will be bald sooner then later.

Im not sure if the Humira is working on me yet. One thing for sure its not helping my fistulas. OUCH The more I go the more my bum hurts and stings all day and they are still draining some days more then others.

My next injection will be next Thursday so I hope and pray that it starts working.

HELP Katiesue I will have to do this injection all by my lonesome!!
I am giving you plenty of time to fly down here Katiesue LOL

Has anyone tried rubbing oral gel on the site of injection? Just a thought because I had to buy some for my teeth.

By the way did everyone have a merry hoho. I was away for 6 days without the internet!!!!YIKES.I survived threw it.

Tammy
12-26-2007, 11:47 PM   #56
GregD
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I've been on Humira for about 3 months now. This week was the first time I had a localized reaction to the shot. I have a welt on the injection site about the size of a quarter, that itches a little less than a mosquito bite.

Does anybody know if this means I am developing an allergic reaction to the drug? I know that this occasionally happens to people who are on Remicade for a while.

Thanks

-Greg
12-27-2007, 02:31 AM   #57
saidinstouch
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Tammy (and anyone else) the people at abbot have amazing customer service for us on Humira. They give free sharps disposal and you can be given a reminder phone call or email. They followed me for the first two months I was on the medication with my own assigned nurse to make sure my experience was the best possible. If you call the number Tammy listed, you can get all of that really easily and it makes you feel good about the medication. The sharps disposal is a great boon because at the pharmacy those kits are like $25-$50 and this is 100% free for life.

I haven't tried oral gel, but as Katie suggested if you can just go for it, it is by far the easiest. I finally was able to do that and I realized it hurt less and for once I didn't bruise around the injection because of a lack of pressure. Just squeeze up a big hunk of skin, wipe it down with an alcohol wipe, place the pen perpendicular with good pressure, and press the button and hold for 10 seconds until the yellow thing stops moving (I wait a few seconds after to be sure). Then just lift the pen and voila the needle retracts evenly and you drop it in a sharps container, wipe your leg with the alcohol pad again and use a gauze or bandage. Mildly stings for a total of 30-60 seconds after the injection which is really trivial. Think of it this way, the pain for 30 seconds compared to the pain of your crohns all the time is a small price to pay, especially since it hurts so little.
12-27-2007, 02:41 AM   #58
saidinstouch
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Now for some advice:

Tammy, I have had a fistula open for two years since my surgery and it still drains, even after 3 months on the humira. I wouldn't be surprised if it took 6+ months to start working on a fistula because of the nature of our disease and the inflammation. What I can offer is some advice how I deal with the pain of the fistula + hemorrhoids. I take a bath after every single bowel movement, it stops the bleeding + any stinging within seconds of sitting in the water which I fill as I do my business. Since I guess I am lucky with my crohns actually slowing my intestines down I am lucky to go once a day (it just hurts like hell) so the bath works for me and is actually really good for promoting cleanliness and healing in the area anyway. If you want a surefire way to help stop a bit of the pain, then a bath really does the trick.

Greg:
Hopefully you've read about the importance of moving your injection site around. At the minimum your shot should be at least 1 inch from a previous injection site, but more than that is highly desired. An ideal rotation is left leg, right leg, left stomach, right stomach and then repeat going from the upper part of legs and stomach to the lower part. This gives you 8 highly differentiated injection sites to ensure you inject far apart. After 8 injections you should be fine to return to the start of the rotation with no problems. If you are like me and hate doing the stomach injections, then try going upper left leg, upper right leg, lower left leg, lower right leg and cycling around there. That should also work, but you could still get a localized reaction.

The good news for you is this, you will not develop and allergic reaction to this drug like remicade. You CAN be allergic to it simply because you are allergic to it, but you would know this already. It is a humanized(full human protein except a very tiny portion of the receptors) antibody rather than a chimeric antibody like remicade(half human/half mouse protein). You can also try taking a benadryl 15-20 minutes before you injection(around the time you start to ice + warm-up the pen) and that might help as well.

Hopefully this advice will be useful to you two. Also check out the humira website as it has a lot of good information and be sure to enroll in the MyHumira program ASAP as it has been a wonderful experience.
12-27-2007, 04:00 PM   #59
TammySue62
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saidinstouch said:
Tammy (and anyone else) the people at abbot have amazing customer service for us on Humira. They give free sharps disposal and you can be given a reminder phone call or email. They followed me for the first two months I was on the medication with my own assigned nurse to make sure my experience was the best possible. If you call the number Tammy listed, you can get all of that really easily and it makes you feel good about the medication. The sharps disposal is a great boon because at the pharmacy those kits are like $25-$50 and this is 100% free for life.

I haven't tried oral gel, but as Katie suggested if you can just go for it, it is by far the easiest. I finally was able to do that and I realized it hurt less and for once I didn't bruise around the injection because of a lack of pressure. Just squeeze up a big hunk of skin, wipe it down with an alcohol wipe, place the pen perpendicular with good pressure, and press the button and hold for 10 seconds until the yellow thing stops moving (I wait a few seconds after to be sure). Then just lift the pen and voila the needle retracts evenly and you drop it in a sharps container, wipe your leg with the alcohol pad again and use a gauze or bandage. Mildly stings for a total of 30-60 seconds after the injection which is really trivial. Think of it this way, the pain for 30 seconds compared to the pain of your crohns all the time is a small price to pay, especially since it hurts so little.

Thanks for your help. The Humira team already gave me everything including a sharps container,DVD to watch.a magnetic timer to remember your next injection.a personal diary,a ice pack 2 napsacks why I dont no I carry bag in case your away,a pen to practice with,materials to read up on.a toll free number. Which I have called and no-one can seem to answer my 2 questions
12-28-2007, 05:59 PM   #60
saidinstouch
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Wow you got even more than I did...though I suspect my moving right after I registered with them and them not noting my new address was the cause of this problem. A practice pen would have made my life 100x easier because that loud popping sound was what made it hard for me until this last injection!
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