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


 
12-31-2007, 06:55 PM   #61
butt-eze
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Humira or methotrexate is my next step. Has anyone started humira prior to showing symptoms of a flare?
01-01-2008, 09:31 AM   #62
katiesue1506
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I started Humira while I was in remission... it could be counted kinda like that.
01-02-2008, 01:57 PM   #63
TammySue62
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I am suppose to do my next injection on Thurs,but I had to call the Humira hotline because of some side effects that I have got. Th Humria Team said to call my Dr. ASAP but he is not due back until Mon. and I am due for my injection Thurs.Here are some of my side effects. Major hair loss still, teeth still aching, bloating nausea very bad. numbness of my fingers,one moment i fell fine and the next I get dizzy spells where I have to lay down and migraines bad which I had an injection for that about 3 wks. ago and now they are coming back.

Any suggestions from anyone?
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01-02-2008, 03:06 PM   #64
Kev
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Hey tammysue62. sorry to hear that your new year is off to so rough a start. I wish I had some great piece of advice to offer, or some 1st hand experience to share. unfortunately, I've neither. I don't know the possible bad impact of not taking your humira on time. it might not be major, or it could be a big deal. (not sure if its risky, like remicade). shame the hotline couldn't provide you advice on the implications/ramifications of delaying a dose. W/o knowing that, the only thing I could suggest is to take it on schedule, and try to cope with the side effects you listed until you can talk to your doctor. figure if you can cope, then let the doc decide whats next.
If you can't cope, or something worse occurs, figure it will mean a trip to the ER. Think that those are perhaps your best options (from my limited take on situation). Otherwise, at this time of year, you could try going to ER or clinic, taking your chances with long waits or dismissive doctors, then asking ER or on call doctor whether to take the humira or not, only to learn they don't know, don't care, or simply advise you to see your own doctor.
figure one way or the other would mean a trip there, but taking the meds 1st means no risk of missing out on the benefits of the drug, no gamble that it may be like remicade, and would only mean a trip to the ER if gamble didn't work. I mean, those side effects are nasty, but I would risk them if it were me. I dunno if that makes any sense or not, but I hope it helps, OK?
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Remicade June 17th, 2014
01-04-2008, 10:12 AM   #65
katiesue1506
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Ok... I injected last night... it went ok... i still have the big puffy welts even though I'm icing before and after injection and putting benedryl on the area afterwords.... I tried the pill form of Benedryl as well. I don't know anymore. I guess I'll just keep truckin' since the welts are tolerable. I mean they are just itchy and sore.

In other news... I took off my gray end caps this time and a little tubey thing fell out... I think its a needle cover, but I've never had this happen before so I don't know.

As far as how I've been feeling lately; I've been okay, but since being on break from college I've eaten whatever I wanted and not taken care of myself. No diarrhea... but my stools have been hard... so hard I've been bleeding. That's all I know for today!
01-04-2008, 10:53 AM   #66
TammySue62
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Kev said:
Hey tammysue62. sorry to hear that your new year is off to so rough a start. I wish I had some great piece of advice to offer, or some 1st hand experience to share. unfortunately, I've neither. I don't know the possible bad impact of not taking your humira on time. it might not be major, or it could be a big deal. (not sure if its risky, like remicade). shame the hotline couldn't provide you advice on the implications/ramifications of delaying a dose. W/o knowing that, the only thing I could suggest is to take it on schedule, and try to cope with the side effects you listed until you can talk to your doctor. figure if you can cope, then let the doc decide whats next.
If you can't cope, or something worse occurs, figure it will mean a trip to the ER. Think that those are perhaps your best options (from my limited take on situation). Otherwise, at this time of year, you could try going to ER or clinic, taking your chances with long waits or dismissive doctors, then asking ER or on call doctor whether to take the humira or not, only to learn they don't know, don't care, or simply advise you to see your own doctor.
figure one way or the other would mean a trip there, but taking the meds 1st means no risk of missing out on the benefits of the drug, no gamble that it may be like remicade, and would only mean a trip to the ER if gamble didn't work. I mean, those side effects are nasty, but I would risk them if it were me. I dunno if that makes any sense or not, but I hope it helps, OK?

Thanks for the advise!!!
I did get to speak to a on call Dr. and he said that the choice was up to me.
So as I am typing this I am gonna go and exchange the Humira injection (they didnt send me the pen needle)and when I get home inject myself. I mean I can only get worse But I am praying for the best and hoping that it was just another reaction of having CD.
01-05-2008, 02:27 PM   #67
GregD
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katiesue1506 said:
Ok... I injected last night... it went ok... i still have the big puffy welts even though I'm icing before and after injection and putting benedryl on the area afterwords.... I tried the pill form of Benedryl as well. I don't know anymore. I guess I'll just keep truckin' since the welts are tolerable. I mean they are just itchy and sore.

In other news... I took off my gray end caps this time and a little tubey thing fell out... I think its a needle cover, but I've never had this happen before so I don't know.

As far as how I've been feeling lately; I've been okay, but since being on break from college I've eaten whatever I wanted and not taken care of myself. No diarrhea... but my stools have been hard... so hard I've been bleeding. That's all I know for today!
That thing with the needle cover happened to me once. I called Humira and they said that it is a defect that happens every once and while. They sent me a replacement pen free of charge.
01-12-2008, 12:20 PM   #68
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Well, just had my 6th injection and hit the 3 month mark, been injecting the same left leg spot now without any welts or marks ... my leg was pretty sore this time around though, and i was incapacitated for a good few minutes after the injection. I didn't post about it, but two weeks ago on my 5th injection i didnt hold the needle in strongly enough i guess and it pushed out of my leg early and some of the medicine leaked out down my leg. Maybe that's why i've been feeling not the best lately, or maybe its cause i've not really cared about my gluten intake. Still trying to figure out if that effects me as well (it is hard staying away from gluten..). I hope the rest of you are doing/feeling good with your humira too
01-17-2008, 08:15 PM   #69
katiesue1506
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K guys, I injected tonight... it just seems that it gets harder and harder to inject myself. I just dread it more and more. But it went ok... I've been feeling ok... just a bit "funny" on some days, but overall good.
01-30-2008, 04:25 PM   #70
katiesue1506
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SO.. I had my first bad experience with the Humira people (Medco Pharmacy). Called them up about a week and a half ago, and tried to order some more medicine. Seems fairly easy right? Well... first they couldn't find me in the system. So once they found me, they realized that my prescription had moved to the normal Medco pharmacy, and not Accredo Medco Specialty pharmacy. So I talked to the lady, and she said that everything was fine, and it was being expedited. then a couple days later I get a call from a guy confirming that I put in a request for more medicine... yes I was confused. I called four days later to make sure it was really coming still, because it usually is there by Friday If I call on a Tuesday.

This new lady said that everything was fine and that she was expediting it, and that someone would call me back and leave a voicemail on my phone. Never happened, but I gave them a couple more days and I called again... this time I told them everything that had happened and they sent me to Customer Services. This lady was really nice and revealed to me that my shipment has been sitting in the warehouse for 2 weeks. I'm supposed to inject tomorrow, which means even overnight shipping won't get here until Friday. The lady then said "well, if you would like, I could send you to a local pharmacy to pick it up, if you have the money, and then we can reimburse you what your insurance normally pays for it." Humira is about 13,500 USD a year... putting one box at around 1,125 USD... I don't have that kind of money lying around. All I can say after this experience is... thank you insurance! It allows me to only pay 160 dollars a year.

The other thing, was the last time I had an injection, I called Medco and wished to speak to the Pharmacist, and they said that the lines were too busy and they'd have one call me back... never happened.
02-01-2008, 05:44 PM   #71
Sojourn
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That's a bum deal. So you were not able to inject on schedule? The pharmacy I'm dealing with, Curascript, has been really good and even calls to see how I'm doing. I think they're doing their own survey of Humira. They also call, a recording, when it's coming time for another shipment.

Hopefully your pharmacy can get their act together. If not you might see if there's any way to change. Though I know that's not so easy when it's up to insurance. About them saying they would "reimburse" you, even if I had the money, I wouldn't take a chance with that. I could see that becoming another two months of phone calls, etc, to get it back.
02-01-2008, 07:58 PM   #72
katiesue1506
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No I was late on my injection... my UPS guy even said something to me about my medicine not being on time (he knows I get my meds UPS Red)

I did inject tonight though... not doing too bad. Just the big itchy welt... but other than that... pretty good.

I had a bad poo this morning though... a bit more blood that I'd have liked to see... but it's due to fissures.
02-02-2008, 12:57 PM   #73
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Hey Katiesue. Hope things go OK... and that the humira does something for the fissure issue. I'm 'assuming' that a minor disruption in the continuity of the meds shouldn't pose a signficant risk. one of my 'fears' of going LDN was availablity. I wasn't completely comfortable in dealing with a long distance pharmacy. Fortunately, so far I've been able to avoid that scenario. Is it all straightened out now? Will you be getting refills regularly?
04-02-2008, 10:59 AM   #74
katiesue1506
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Hey guys... I've been off of the humira for about a month now... maybe a month and a half... and so far... so good. I have my days, but don't we all? I'm surprised its gone this well though.
04-03-2008, 12:06 AM   #75
BWS1982
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Perhaps you covered it elsewhere, but why are you off it, are you doing that well, even without it? How'd you and your medical team come to decide to chance something like that? Sounds kinda risky....

Not to jinx anything, just surprised...
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04-03-2008, 07:39 PM   #76
katiesue1506
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Well... I had been sick for about 3 or 4 months (cold like symptoms) so I was sent to see an infectious disease specialist, and he was checking for histoplasmosis and cryptoccocus... well both tests came back negative and the chest x-ray was negative (annnnd a 1000 dollars later.... ) We still don't know whats causing it... it could have been a side effect of Humira... however being off of Humira for a while now, I still have sinus drainage. I'm currently also taking an anti-fungal for an ear lobe infection that just never got better since I was still on Humira and my immune system was being suppressed. So my GI and infectious disease specialist (whom my GI referred me to) decided it best to take me off of the Humira to allow time to heal.

I got back to the Infectious Disease specialist in a week for a follow-up so I guess we will see what happens in the way of treatment from there... I don't know if I'll restart the Humira or try to find out my I'm having cold-like symptoms or what... but my GI told me if I started another flare I'd prolly be placed on PRED again... NEVER again will I take that crap... I'd rather suffer with the pain... it just makes me feel crappy about myself. Anywho... thats where I am right now...


I WILL say that I am NOT missing those biweekly shots However I'm wondering if I have to start Humira again, if i will have to restart the whole loading dose stuff.... EWW
04-07-2008, 02:47 AM   #77
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Katie, I often get cold/cough like symptoms where for a month or two in a row I get a really really nasty cough (that oddly happens mostly when I talk and stays calm otherwise). I have congestion on and off during the time and my blood tests + chest x-rays always come back clear.

The best my doctors and I could figure out is that it is a symptom of my crohns being active and there was a report about a year ago out of Stanford that supports that very theory. Supposedly a decent percentage of people with IBD (dont know the number but it was high) also get respiratory symptoms, so it is quite possible you are experiencing another symptom, though if you are getting congested it doesnt seem quite as much like what I had since my congestion was fairly minor. Even still, it's just a thought, hopefully it can help somehow.
04-07-2008, 10:06 AM   #78
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Hey thanks! My symptoms are fairly minor as well... st least i think so... there are only a few nights every couple weeks where my nose is so stuffed I can't breathe, but I cough some and have to clear my throat and stuff like that. Its all manageable stuff... but I figured I should get it checked out.
04-07-2008, 03:38 PM   #79
butt-eze
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Recently at the IBD conference I went to the doctor confirmed that stopping Remicade just because remission is reached is not recommended. I know that Katiesue's situation is different but I want to know what that means for her future with Humira. Can you stop and start Humira without concerns of it becoming inaffective?
04-07-2008, 04:05 PM   #80
saidinstouch
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Humira is similar to remicade in action but different in this regard. Remicade is chimeric so if it clears from your system, your body will recognize it as foreign though it accepts it for the time you have a reasonable load of it in your system. Humira on the other hand is humanized, so you can stop and start it at will because your body doesnt think it is a foreign protein even if it clears from your body.
04-07-2008, 04:25 PM   #81
butt-eze
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Thanks! That was exactly what I was looking for. Thanks for the inforation and explanation. I'm thinking about starting Humira but had a (potentially) life-threatening situation with Remicade. My fingers are crossed that it doesn't happen again...
04-07-2008, 05:08 PM   #82
katiesue1506
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Yeah... the mouse protein (chimeric) that is used in Remicade is what makes it act that way. Humira is a human protein.
04-08-2008, 03:14 PM   #83
saidinstouch
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Humira isn't actually a human protein, its just humanized...small difference but still for us bio nerds it is there .
04-08-2008, 03:52 PM   #84
katiesue1506
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Well there ya go... its humanIZED... I'm really good at being dumb sometimes. One would say its the blonde hair... but I only have blonde hair during the summer... the rest of the time its reddish. So I just say its a momentary memory lapse... yeah... that's it... e
04-08-2008, 04:00 PM   #85
saidinstouch
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The biggest reason I'm being anal about it other than being a bio nerd is that I want people to recognize the differences since it is important to know as much about our medications as possible. For the time being there are few (if any) fully human proteins since it is extremely difficult (and some say unethical) to challenge a humans immune system to generate antibodies to a specific disease which is what would be required to form fully human antibodies. Part of the problem is to generate an antibody the body has to recognize something as foreign and trying to make it recognize human tissue as foreign is problematic. Humanized proteins just contain a very very tiny portion of mouse protein at the sites that are important for activity and the rest have been replaced with human proteins wherease chimeric proteins are a much higher proportion of mouse protein.
04-08-2008, 04:11 PM   #86
Kev
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Being anal on this site.... isn't that a pre-requisite? ;-) Essentially, it seems to be a matter of percentages, or 'degrees'. Both are chimeras, just one is at the lowest possible percentage 'humanly, scientifically' feasible under current technology. Does that sound like a valid appreciation of the situation from a layman's perspective? And, if so, then is my remaining concern a valid one as well? That the lower percentage of non human material incorporated into this biologic is intended to minimize anti-body issues... but has that been tested N proven, or is it just an assumption?
04-08-2008, 05:08 PM   #87
saidinstouch
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As far as I know humanized mABs are pretty much non-immunogenic and can be started and stopped at will. This was told to me by a professor who worked for genetech (basically the company that created mAB technology) for a number of years and has a long history of protein engineering. Your analysis is fairly correct though it depends on the particular drug. You can tell humanized (umab) from chimeric (imab) by the end of the actual drug name. The rest is just details, but you can be fairly sure the humanized proteins dont clear as quickly and are supposed to not be immunogenic in a majority of the populace. There will probably be a select few that have issues, but that's the case with any drug is it not?
04-16-2008, 09:23 AM   #88
toastermm
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Good to see a Humira log, this helps me alot, I've been following this post for a while. I've been on Humira for about 5 months and just did my most recent shot yesterday morning. I'm starting to notice that the day of my shot about 4-5 hours later, my appetite goes through the roof. I can't stop snacking/eating. It's as if Humira makes my fangs come out and I deplete my pantry.

Anyone else feel intense cravings the day of the shot?
04-16-2008, 10:05 AM   #89
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I don't think I've had any cravings, though I do my shot on a Friday night, and I usually eat more on the weekends. I'm only 9 weeks into my shots, and haven't noticed any changed except going to the bathroom once a day vs. 12 times. I know - huge change that I'm grateful for, I mean that I haven't noticed anything besides that, good or bad.

Katiesue, are you back on the Humira now, and if so did you have to reload again with 4 injections? You said you were feeling good, maybe you didn't start again.
04-16-2008, 01:14 PM   #90
katiesue1506
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No I'm not back on it yet... I'm supposed to call my GI and ask him what to do... whether I need loading doses or just start again, or move back to remicade or what... I'm completely drug free right now... well except for a Claritin I've been taking to see if I have allergies... HA funny way to diagnose myself, huh? Just go take a pill, if it goes away, you had it

Anyhow... I've been doing pretty well, I think... I mean i really should probably get back on meds of some sorts... but I'm enjoying the freedom as of now. I'll call when i start pooping 5 times a day and its runny.... as of now I only go about 2 times and its solid (I always used to go about 2 times a day pre-diagnosis)

No news is good news, right?
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