Humira... my trek (a diary)

[katiesue1506]

Hello all. I was propositioned with the opportunity to make a diary about the happy world of Humira. So I decided to... in case anyone is thinking about starting it.

First off, I will start with how it feels. The form in which I take Humira is in a pre-loaded pen. I just place it up against my skin and press the button on the top and the happiness is injected into me. You can do it on the tops of your legs or in the area around your belly button (2 inches away). The needle isn't bad at all, however, I'm not going to sugarcoat the feeling... it hurts! It is the medicine that stings beyond belief. The first dose, you typically have to take four shots, the second dose (two weeks later) usually you take two shots, and then after that its one shot every two weeks. I take mine on Thursdays. :ycool:

Ok!

I've been on Humira for about 3 months now... and it was going well until about a month ago. It just seems like I start to decline in the days right before my next injection. Also, I've been getting a huge swollen, itchy, red, and hot lump in the area I inject it into and it won't go away for usually 3-4 days.

As far as how I'm doing personally... stools are formed and I go about 2 times a day. I have been feeling pretty run down lately, but I'm not sure if this is due to college or not. I got really lightheaded after my workout the other day. As I've been feeling pretty good lately, I've started a workout routine... also to lose some weight since this summer when I got better I pretty much ate all the food I could to make up for not being able to eat

My next injection is not this Thursday but next... so I guess I'll post further news then! I hope this diary is of some use to people who are either considering taking it or on it right now!

 

[shoe_fanatic708]

Humira does sting horribly . I was on it for a while about two years ago, it seriously felt like a semi truck was running over my arm. I did find that it helps if you ice down the area with an ice pack for about a half hour before the injection, it helps to numb the area and the medicine isnt as painful. :]

 

[Kev]

Hey Katiesue. Great post. You may not realize it, but you've provided a lot of info there. Like, I wonder how many people, myself included, assumed humira meant a trip to a clinic or hospital, and treatment by IV infusion that took hours.
The fact that it's also available in a self injecting pen could make a world of difference to someone trying to decide between remicade, humira or metho...
And you haven't provided too much info... like, we all know there's a level of pain involved, but I think you said it best when you said "and the happiness is injected into me'. I couldn't think of a better way to sum up all the good and bad and provide a synopsis. I for one am looking forward to your next post.

 

[katiesue1506]

Well I hope it helps someone. I noticed my big welt from the injection disappeared yesterday... so it only takes 5 days... ha!

 

[kpratte]

Well I hope it helps someone. I noticed my big welt from the injection disappeared yesterday... so it only takes 5 days... ha!

That is definitely an "ouch", but good info none the less.

- Ken

 

[soupdragon69]

This is a great thread Katiesue please keep it up!

My Gastro nurse told me when I was starting Remicade that they may swap me over down the line to Humira as it isnt available here yet for Crohn's patients...

Am really interested in hearing your thoughts on this. Thanks so much for sharing them!

 

[katiesue1506]

Hey guys... I just thought I'd let you know that i'm not allowed to take my next Humira dose because I've been put on Cipro for 2 weeks... due to an infection.... but I will definitely post my next dose.

Anyhow... for those who don't know... you can't take humira and antibiotics at the same time... kinda useless to anyways.

 

[Kev]

Hmmm, is it a drug interaction thingy, or is it (my guess) that they don't want to put you on immuno suppressors while your body is trying to fight off what you are taking the cipro for? I'd figure the last thing theyd' want to do is lower your immunity while fighting an infection, and you must have an infection to be given the cipro... Just a WAG (wild assed guess) on my part though..

 

[katiesue1506]

Well antibiotics are supposed to work in conjunction with your immune system... and if it is suppressed, then it's not going to do any good taking them.... kinda like trying to put out a raging house fire with a water gun. You know? And yes, they wanted me to have a temporarily strong immune system for the fight.

But yeah I received a nice little ear infection... apparently bad enough for antibiotics? The cipro is working quite well though.

 

[mrsk]

Katie,
I'm on Humira too and your posts are very helpful. I had a terrible flair and nothing would work almost 2 weeks after taking the humira everything was back to normal. I like it a lot but it is a quite a pain...literally I didn't know about the anti biotic thing though, it makes sense. Hope you are feeling better

 

[katiesue1506]

So apparently I'm lagging in my updates... I had a shot this past Thursday... it went alright although I think I may have freaked myself out a bit. Or maybe it was the Humira, but after I took it I got really hot and flush. Then it felt like someone was sitting on my chest and I couldn't breathe. Like I said, it could have been purely psychological, but I dunno. Maybe it was due to the fact that I hadn't taken it in a while. However, the welt went away quicker this time... so thats a plus.

Although I do have some sad news... I had a bad poo today... first one in a REALLY long time. I'm hoping it was a fluke or something, but it was accompanied with stomach pains.

Keeping my fingers crossed. My next update should be on Thanksgiving actually (next thursday) but it will prolly be a little after that.

 

[saidinstouch]

Katie do you rotate the shots between both legs and both sides of your abdomen? I was told that ideally you should wait 2-3 injections between using the same area again, though moving at least 1 inch apart is the minimum. It sounds like you might be having injection site reactions caused by using a site too often or something along those lines. If you don't rotate around then that might be causing the welts. You might try calling the myHumira people and see what they say about your flushing and the welt, they've been really helpful for me. You could also ask your doctor about taking a benadryl or something to help with the welts and flushing if it continues.

 

[katiesue1506]

Well I switch legs... but I'm too big of a baby to try my tummy yet... I mean... the TUMMY... its sensitive...

However I am running out of room on my legs....

 

[Rosemarie]

Hello Katie! I've been taking the (loaded pen) Humira shots for a few months as well... I just want to say, dont be afraid to try the belly area. I started off sticking them in my thighs, but I found that the lower belly dosent hurt as much as the upper thighs. MY thighs are kinda bony though (haha =) so that MIGHT have a little to do with it.... If you do decide to give it a try, remember to SIT DOWN, so your stomach is relaxed and the skin isnt stretched across your stomach. (helps alot... took me a few shots to figure that out!)Afterwards just sit there for a minute cause if you stand up right away it will pull the muscle tight and make it hurt more. So anyway... just wanted to give you a little advice on the tummy area. Hope you are well =)

 

[TammySue62]

Hi Katie
I cant take Remicade no more so they are gonna put me on Humria.
The only bad decission abouy this is once you stop taking Remicade and try the clinicle study on Humria your beat for Remicade cant go back.
I am just waiting for the paper work to go through.

TTYL TAMMY

 

[Kev]

I knew a young lady years ago who was an aspiring model, specializing in swim suits. She was also diabetic, took insulin shots multiple times a day. Apparently it's prone to visibly breakdown the skin tone and muscle in the injection sites, so she opted to self inject in areas covered by even the skimpiest swim suits. It never ceased to amaze me the self fortitude it must have taken to do that. I won't, for the sake of the really squeamish or the prudent, divulge the exact locations she choose, but suffice it to say she was fortunate to be blessed the way she was, as the marks never showed.

 

[kellyc]

My son is 13 and about to begin injections monday, your info was great, i hope this works for him, if not he's looking at surgery. are you seeing results?

 

[lamor32twigs]

Just wanted to let you know that the humira shots in the tummy aren't too bad. I have been on it for 11 months now and have started using my abdomen finally.

It still stings like heck sometimes, but it is really no worse, and almost better than my thighs. Try it!

Good luck!

 

[Kev]

As for the stinging, anyone tried numbing the location first with baby orajel or anbesol? Applied 15 - 20 minutes before injecting, it might alleviate/mitigate the stinging sensation. As these are used for infants, orally, as a very mild, safe anesthetic, it probably wouldn't pose a problem for adults. But that is strictly a S.W.A.G.! (Stupid, wild assed guess). If you try it, try it at your own risk.

 

[katiesue1506]

Well I do make sure that I ice the area VERY THOROUGHLY before I go shooting myself up... still hurts... maybe a topical anesthetic would be beneficial? Kev... you make a lot of SWAGs and WAGs... but I think they are very educated.

 

[Jvstin]

I should be starting Humira soon, and now you've made me all nervous. I've heard a lot of stories about the stinging, but I seem to get infections from everything so I'm afraid I may end up in the same boat as you. thanks for posting a diary about this though, I among others I'm sure really appreciate it.

 

[katiesue1506]

Alright! My last injection... which was on Thanksgiving went ok. I had a big itchy welt... but whats new? I think it went away on Saturday or Sunday. I also had a flash headache right afterwords and the feelings of quick hotness. So I went and stood outside for a minute to cool down. Other than that, it was alright. I'm beginning to wonder if I need to ramp up my dose to once a week... I'm starting to get to the point where I KNOW when I need my shot. Mild pain... occasional bad poos (Big D) and just the dull achy feeling in my LRQ... for some reason I've also had a shift in pain to my LLQ... so I dunno if its just further into my intestines or what. The pain only comes once or twice a day, so its completely managable, and its not horrible pain... just dull and slight.


Jvstin-- yeah the sting it pretty bad, I'm not going to lie, but its a cheap price to pay for a painfree 2 weeks. I always use ice to numb the area... still stings like hell, but I dunno... guess it comforts me somehow? Just when you do start Humira and do inject yourself, don't tense up or hold your breath... you'll pass out. You have gotta be completely relaxed. It really isn't that bad though... you seem tough enough to handle it.


oh... and OT but, my puppy has an ear infection... I feel so bad for her

 

[Kev]

well thanks, Katiesue.. but you know what they say.. a little knowledge is a dangerous thing. You say that this is your last injection? As in final, or latest?
Just wanted to clarify that point... BTW, this is a great diary, thanks a lot, OK

 

[katiesue1506]

My LATEST injection... lol sorry about that one!

 

[lamor32twigs]

Just wanted to let you know that as of last week I switched over to weekly humira because of fistula issues and will let you know how it goes.
My GI says that the studies for Crohns patients do not show much improvement between weekly or every other, but for arthritis there is a benefit between the two.

I'm willing to try to get the fistula closed and forego surgery right now.

 

[milesrlv]

Hello, Katie my doctor is talking about starting me on Humira because nothing up till now has helped. The injection pen sounds the same as or at least similar to one that I was taking for blood thinners (Lovenox) which is administered in the abdomen specifically in this case. The first time I stuck myself in the belly I was in total dread just before sticking myself but it quickly became routine. The swapping up on injection sites deal is a must with this stuff because it has a tendency to leave massive bruises. Fortunately for me I have now stopped the blood thinner injections. I suspect the stinging from the Humira might be worse than what I felt with regard to the blood thinner injections. I am hopeful that the Humira will help me. Good luck to you.

 

[katiesue1506]

Ok guys... I did it. Today... in my belly... and the verdict is... I don't think I'll EVER do it again. I had to have my boyfriend pinch the other side of my belly while I injected myself. Really... it hurt a lot. And now the red itchy welt is on my stomach so I look like a hillbilly when I scratch it... I did notice that it bled a lot more than my legs do.

It was kinda funny though, because I told Bruce to pinch me... and he did (before I even had the needle out) and I yelled at him and then he pinched me too hard... and then too light... so it took forever to find the right amount of pressure before I actually injected myself. It was a comical situation... all the while our dog watching and rolling her eyes.

Anywho... I've gotten it over with for another two weeks WOOO!

 

[katiesue1506]

Although... now that I look back on it... I didn't take any advice from you guys who've tried it in the tummy... I was standing and I did it exactly two inches to the left of my belly button... maybe lower tummy doesn't hurt as bad?

 

[flying4frogs]

Hey katie...I am also on humera (6 months). I also get a reaction to the injection. My Doc has me taking a antihistemine 30 minutes before the injection. This keeps the ichy at bay.... Good Luck

 

[katiesue1506]

Hmm... maybe I'll pop a Benedryl a little bit before I give myself the shot next time... I mean they have you take one before Remicade... why not Humira? Thanks for the suggestion flying4frogs... I will try to actually remember this bit of advice... because the welts are about 2 inches in diameter, itchy, and feel like a bruise when you touch them.

 

[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

 

[katiesue1506]

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.

 

[Sojourn]

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.

 

[katiesue1506]

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).

 

[saidinstouch]

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!

 

[TammySue62]

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

 

[katiesue1506]

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.

 

[saidinstouch]

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.

 

[Sojourn]

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.

 

[AbstractDonut]

Hope you don't get caught, 600,000 without power in Oklahoma.

 

[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 :ymad:

 

[katiesue1506]

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.

 

[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.

 

[TammySue62]

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:eek2:

 

[katiesue1506]

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.

 

[Sojourn]

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.

 

[saidinstouch]

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.

 

[katiesue1506]

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.

 

[saidinstouch]

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.

 

[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.

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.

 

[saidinstouch]

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.

 

[Sojourn]

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?

 

[katiesue1506]

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!

 

[Sojourn]

Thanks , yes, it will be the preloaded pens.

 

[TammySue62]

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

 

[GregD]

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

 

[saidinstouch]

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.

 

[saidinstouch]

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.

 

[TammySue62]

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

 

[saidinstouch]

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!

 

[butt-eze]

Humira or methotrexate is my next step. Has anyone started humira prior to showing symptoms of a flare?

 

[katiesue1506]

I started Humira while I was in remission... it could be counted kinda like that.

 

[TammySue62]

What Should I Do ?

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?:confused2:

 

[Kev]

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?

 

[katiesue1506]

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!

 

[TammySue62]

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.

 

[GregD]

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.

 

[jobengals]

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 :smile:

 

[katiesue1506]

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.

 

[katiesue1506]

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.

 

[Sojourn]

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.

 

[katiesue1506]

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.

 

[Kev]

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?

 

[katiesue1506]

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.

 

[BWS1982]

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...

 

[katiesue1506]

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

 

[saidinstouch]

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.

 

[katiesue1506]

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.

 

[butt-eze]

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?

 

[saidinstouch]

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.

 

[butt-eze]

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...

 

[katiesue1506]

Yeah... the mouse protein (chimeric) that is used in Remicade is what makes it act that way. Humira is a human protein.

 

[saidinstouch]

Humira isn't actually a human protein, its just humanized...small difference but still for us bio nerds it is there .

 

[katiesue1506]

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... :yrolleyes: e

 

[saidinstouch]

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.

 

[Kev]

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?

 

[saidinstouch]

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?

 

[toastermm]

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?

 

[My Butt Hurts]

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.

 

[katiesue1506]

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?

 

[Kev]

Hey Katiesue... do you think it's even possible that your doc would try putting you back on remicade?

 

[katiesue1506]

I'm not sure, I only ever had two Remicade infusions... but I dunno if thats enough to still recognize it as an intruder... I just don't know.

 

[TammySue62]

Hi
Its been awhile.
Yes it is possible to go back on Remicade!
I am in the process right now, just have to get it approved by insurance co.

Tammy

 

[Kev]

Welll, my understanding of remicade is that it MAY be remotely possible to take it again; but for practical purposes it isn't likely that you will be able to. It all hinges on whether, on taking it the first time, the body was able to build up antibodies to it. If it has, then it's unlikely that you'll be able to take it again. All the best; heres hoping you can take it, and that it works for you.

 

[BWS1982]

I know a lot about science and biology in many regards, but some of it is a mystery to me at the same time, hence this thought:

If one is immuno-suppressed (Imuran for ex.), does the body have a harder time building antibodies? Like is it handicapped for such a purpose? I don't know what all is "suppressed" when Imuran is taken.

My thinking being that, if the body is first suppressed, then you go on Remicade, go off it, then the body has a hard time building said antibodies.

I have no clue if a real MD would just laugh at me saying that, or if it has any merit, but I am proud of myself for having the insight to conjure up such a concept. :tongue:

 

[Kev]

Benson, I don't think there are any theories, questions, etc., that one should be hesitant to put forward. Asking questions, thinking out loud, theorizing; it's all part of the learning process. Frinstance, I've no clue as to how each of the various immuno suppressors work... whether they simply 'flip a switch' and our bodies don't process the signal to 'attack', or whether the factories in us that produce white cells or anti-bodies are shut down or stopped up. I believe I recall with some that the docs keep an eye on our 'white cell' counts; to me that would indicate that some drugs do directly interfere with our bodies ability to create germ fighting soldiers. I suspect/hope/assume some may just target the HQ. But it's all guesswork on my part... My crude understanding of it is that white cells do the job of fighting general things, and antibodies are custom designed to go after specific things... but they CAN be tied into our overall response system too. For example, 1st bee sting, body produces antibodies to that venom, and marks it as a serious threat... but in some folks, the 2nd sting is targeted for a full blown assualt; not only are antibodies produced, whole body goes into hyper mode; an 'allergic' reaction, which can bring on (OK, I am not even going to try to spell anaphalyxis).. but you get my crude point. Even if not carried to that extreme, if one develops antibodies to a given substance, the body will be better equipped to fight it next go round. That is what makes resuming remicade usually a case of diminishing returns.

 

[katiesue1506]

HEY GUYS!!! guess what I got for my bday today.... an earthquake!!! In Indiana... can you imagine that? My mom told me we also had one about a month before I was born (I was a month late).... so I'm thinking that earthquakes are just my way of saying... LOOK OUT HERE I COME!

 

[saidinstouch]

I got the northridge, ca earthquake for my bday in 1994! Stupid 7.0+ earthquake even if they claim it was like a 6.4 or something. Anyone and everyone who felt it knows that it was way bigger than what was claimed, but any earthquake over a 7.0 creates a state of emergency where you pay no taxes and what have you so it was declared smaller even in the face of an abundance of evidence stating otherwise!

Is everyone you know in the area ok? As a california resident I've had my share of shakers so I know what they can be like and the worry that friends and family are alright.

 

[katiesue1506]

Oh yeah... we are ok... it was a baby one... 5.1 I think? it was kinda cool since I've never been in one before! But I really like natural weather phenomena... earthquakes, tornadoes, the like.

 

[Kev]

I hear it affected Kentucky too... and its epicentre was 7 miles underground, and was felt as far away as Chicago... Did you order that from Sears, or L.L. Bean?