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Humira Club Support Group

forum contributor

Captain Obvious
Hey. When the stupid specialty pharmacy gets its head out of its ass, I'll finally be starting Humira.

I know there's a Remicade Club, so I wanted to start one for Humira.

I guess if those in the Remicade Club are called Remis, we'd be... Humis? :tongue:
 
Hi, Santos.

Welcome. It's been awhile since I've posted on this board. I started Humira about a year ago, and it's helping in terms of the bleeding. My doctors (I've moved several times because of my dad's job) were also unsure if it was Crohn's or Colitis, but the last colonoscopy that I had led my current doctor to believe that it is Crohn's.

I'm sure other people will give their advice and stories on Humira as well, but here's some tips. My personal preference is the pen as opposed to the syringe. I take it out and let it sit for 20-30 minutes before I inject it. It has a sharp sting, but doesn't last very long. I'm used to it, since I still need blood work every 2 months since I'm on 6MP.
 
What are you on? The stomach hurts WAY worse than the legs... lol I did all four of my loading doses in the legs. I've done one in my stomach about 2 years ago... never again. This Thursday is my double loading dose and then I'm home free for one every other week!
 

forum contributor

Captain Obvious
lol ooooooh Katiesue..... I almost (?) cried like a little kid lost at Kmart the other day. I tried the right thigh and it hurt like a mutha....... and I carry more weight in my legs, definitely not in my stomach!
 
Im starting Humira today! should i do legs or stomach? i think i might have my fiance inject it for me because I am a little scared of needles lol. Any side effects i should expect?
 

forum contributor

Captain Obvious
Post #2, EC? Welcome!! :D

Well, here's where Katiesue thinks I'm insane. I think the legs hurt like a mother, and she thinks that's where the shots hurt the least.

I've been on Humi now for 9 weeks. It's getting better for me doing them in the stomach... I've only done the thigh once (never again - you may have good luck though!).

I haven't had any side effects that I've noticed.

Let us know how it all goes :)
 
Its really not so bad after the loading doses... once you are past those a shot every other week seems like nothing.

Shot day for me is tomorrow! I also noticed if I freeze the shit outta my leg it hurts less.
 
I've been using humira for a while now and like it. I can't handle needles and i'll pass out if I self administer it. So I drop in at grouphealth and they give it to me. I'm usually in and out in 10 minutes. I rotate the backs of my arms, and the fat on the side of my stomach.
 
Joined the Humi club Monday! My GI's nurse had me come in and she did 2 in my stomach and 1 in each thigh... I thought the thigh hurt ALOT more and I was surprised! I had to do insulin shots when I was pregoo, every day so maybe I just got used to shots?! Have not had any bad side effects yet! LEts hope is stays that way!!!
 
i join tha club!!

always did my doses in my thigh. yeah, loading day SUCKED. by the last one i was crying, it seemed to get progessively worse cause i was already burning from one in each leg and great now its time to shove some more in there!!
 

My Butt Hurts

Squeals-a-lot!
Kello in da club?? I had no idea you were even going to start Humira, gurl! GOOD!
(Hey - I know I'm not Humira anymore, once a member always a member.)
 
My Butt Hurts said:
Kello in da club?? I had no idea you were even going to start Humira, gurl! GOOD!
(Hey - I know I'm not Humira anymore, once a member always a member.)
"(Hey - I know I'm not Humira anymore, once a member always a member.)"

psst...me too!
 

My Butt Hurts

Squeals-a-lot!
Dang goddit!!(spelled the way I intended) I read your post wrong. I thought you had JUST started Humira - I couldn't figure that out! I was suprised actually that they were putting you on it, I thought it was for the mucous maybe. Sheesh... what a doofus I am.
 
I've been on Humira for a while now, and I only get it in the back of the arms. I tried the stomach before, and it hurt so bad, that I'm not open minded in getting it anywhere other than the arms.
 
Hey there guys and gals, I am new to the forum but not new to Crohn's. I was diagnosed in 1986 and have been on all conventional treatments and have tried Remicade, which worked fantastic for about 2 years until i became sensitized to it. I just got out of the hospital last month after i had an enteroenterostomy because i had severe stricutres that caused an obstruction. I tried Humira after remicade but i only took the loading dose and 2 more shots after that (every other week). I didn't think it was working so i quit. I went to the University of Chicago Hospital this past weekend (awesome GIs up there) and they don't think i gave Humira enough time to work. Anyone else have any information on how long it took Humira to work for them?
 

forum contributor

Captain Obvious
Hey, Russem!

Happy to have you here :welcome:

I've been on Humira for... I think 3-ish months now. I was having diarrhea between 4-8x/day, and that has calmed down a lot. It did take about a month and a half or so to begin to take effect.

Hang in there, buddy! :)
 
Hi, this is my first post on the site and I have used Humira now for about 6 months and I have had super good results with the drug.

I Fuxxing Hate every other monday when I inject the stuff in my abdomin or leg, i´m totaly going to try the ice cube thing the next time I need to inject

As I am rigthing this, I am in the Hospital going to have surgery. I had a big incident last sunday and colapst at home and found out that I have a obstuction in the small intestans that is about 8cm (3 inch) long and I hafto have surgery.

But in all, I love Humira and the good work it dose for me.

I am so sorry about the spelling, I´m from Iceland and english is just my third language
 
Humira FTW! I also hate giving myself a shot, but find that letting the dose warm up out of the fridge for 20 minutes or so helps. Hardest part for me is finding a good spot with enough fat to grab onto. Seems like I do the stomach the most. Also after the last few injections, i'm starting to have a nice reddish pink swollen area where I injected myself. Anyone else ever get that?
 
Last edited:
Yes Jared, I get that too... I have found it goes away when I'm on Prednisone which means its probably just a mild skin reaction. Mine go away in about 4 days.
 
I was on Humira for 3 months and as MBH knows very well it made me very sick (and now we know why) but I'm still part of the club I think?

I always did it in the belly .. I even put a vid of it up on youtube heh.
 
Heya, I honestly don't know why I didn't try joining a place like this sooner, had the most terrible time in 2009 with my crohn's nothings working and like really can get sucky at times.
Was put on Humira but the funding didn't come through so I'm only allowed it when I get hospitalized, nhs eh!? lol
Anyway haven't had an injection since September but from time to time I get really bad pains in my legs and joints up to the knee so much I can't move them and regular pain killers aren't any use. Just wondering if anyone else has suffered from this side affect and if there's anything around that might ease the pain??
 

forum contributor

Captain Obvious
No answers regarding whether it's Crohn's or UC still.... but GI agrees that the Humira isn't working for me. I have the HIDA scan for gallbladder on 11/12, and I think he wants to deal with that first, and keep trying to figure out the C/UC issue right after that. That's also when I get to see a nutritionist.... hurray for me.

Not sure if I need another colonoscopy at this point, since I've been dx'd and undx'd 3 times now in the last year. Seems as though my intestines are playing games...
 
Blood test on thursday in prep for joining the club...
I'm excited, and scared. This'll be No.4, if I don't get bad side effects I just might start believing there is a god.
 
I recently started humira, about 3 weeks ago and was wondering how long it takes to start working. I have had crohns for 6 years but stopped responding to treatments this fall and my Dr. decided to start Humira. I have been having excruciating pain for about 2 months now and it is pretty unbearable. Everyone says to keep with the humira and that it will start working but i am not sure how much more of this pain i can take. With out my pain pills i am useless. Any advice?
 

imisspopcorn

Punctuation Impaired
Emily I did it for about 8 weeks, and it didn't work for me. My bowel was too far gone by the time I started Humira....Hopefully someone else can give you a better answer. I hope you get some relief.
 
I started humira too, the nurse did the first shot, I did the other 3. 2 in stomach 2 in legs. They said it would take up to 3 months to start working. Next two shots are in another week.
 
Joined the H club this morning :)
Did 2, got another 2 to do this evening on my own. No hassle, a bit of a pain but not as bad as I was expecting.

Phew!
 
Well my Dr. started the work to get me on Humira yesterday, said it would probably take two weeks with the holidays to get me going. Actually on the phone with Aetna now to see how much this is going to cost me.
 
Thanks. It looks like it is covered as a medical expense and not a prescription, so once I meet my deductible it will be 100% covered. Which wont take long with all of my other bills, but I also have enough removed from my checks into a health savings fund to cover the deductible, so the pinch is not that bad.
 
Injector pens are cool. No bothers doing another two this evening despite the second hurting quite a bit. Ouch! Guess that just happens; some hurt others don't.

Crohn'sHobo: hope you get sorted soon.
 
Thanks. They said cause of xmas it might take a little longer, but they had hoped to have my going by the first week of the year.
 

imisspopcorn

Punctuation Impaired
Whenever you pick it up from the pharmacy check that none of the pens/ syringes haven't been broken. That happened once and it was a pain to get the pharmacy to replace it....
 
I have been on Humira for almost two years now. Started out with one pen every other week, then on to one pen once a week. For the last month I have taken two pens a week. I will see my Gastro in mid-January and at that point I will be switching meds. Not sure what, though.
 
Hey, just wanted to join the club. I've been on Humira for about 12 months. It took about 3 months to start working but did wonders combined with Flagyl, I felt almost normal, then got pregnant and things went backwards again, but I'm coping.

I always used to inject in the stomach but doesn't seem quite right now I'm pregnant to be jabbing needles in my stomach so started in the thigh.......OMG, hurts sooo much. Am going to try the ice thing.
 
I haven't tried in my thigh yet, don't think I will either!

It seems to be working for me right from the initial loading doses. Whilst I feel tired I seem to have some resemblance of energy back, for probably the first time in 2 1/2 years! Despite my symptoms being otherwise reasonable - in that I usually only had to go for BM's 2 - 3 times a day, I have slowed down even more - like once or twice a day at most. Pretty awesome!

Anyone else had it work so quickly, or am I in the land of wishful thinking?
 
U

uli

Guest
Just joining the Humira club. Been on it since end of November. Started with 160mg, then 2 weeks later 80mg and from then on 40mg every 2nd week. Felt quite a change in my belly already after half a week ( 20 bm's a day to aprrox. 5-6 ). The last few days before its time for a new "shot" I really feel that I need it because daily bm's and grouling from the stomach increases significantly. Hope to feel even a better effect as the weeks passes by.

Again, certain food like pork and fat in general, will produce a lot of gas and never works well for me and I'm back on the loo to many times a day. Detective work is required to organize the best food pattern, I think ???

All the best to Humira users.
 
Kewl! Thanks Uli and MBH!

Uli: I was warned off pork by a dietician, something to do with fatty acids not being too friendly to us. I would recommend reducing your diet to a few really simple things, like chicken/fish and rice with a few peeled veg like carrots, potato, broccoli/etc. Then once you are happy you are tolerating it, gradually add in new foods.
And Welcome to CF!
 
U

uli

Guest
Thanks Beth,
Yeah I think its the way to go. Small steps at a time ( love asian food .- so here we go :eek2: )
 
Well I just joined the Humira club. yay for New Years changes! I tried the thigh and the stomach and decided the stomach was less painful. all in all not too bad, assuming it actually helps. Ive been tapering off pred and can definitely tell.
 
Just wanted to join the Humira club! :) I started with my loading dose on Monday (all 4 in stomach... was told it hurts less). It was a sting each time but not so bad and didn't hurt afterward like some shots do.

Like Beth, I think it is starting to work a little but wasn't sure it could happen so fast... I guess a little positive thinking never killed anyone so I prefer to think that it IS working.
 
My doctor agrees that the Cimzia is not working for me, so I'll be going on Humira soon. Doing my last Cimzia injections tomorrow, and then starting Humira whenever all the pharmacy/insurance stuff makes sense somehow. Hopefully it will get things under control.
 
AmandaC said:
then got pregnant and things went backwards again, but I'm coping.
what do you mean things went backwards? did the humira stop working while you are pregnant? did they take you off of it when you got pregnant? i am probably starting humira this month but was hoping that we could try to have a baby while i was on it but hadn't found anyone else who had done this personally.
 
I applied for the co-pay assistance $5 from them? I don't go to the doctor to get my prescription until January 21st so will they even help me until I officially have the prescription?
 
Hi Kat,

I would talk to your doc--my first doses came in a starter pack (4 Humira shots for first dose, 2 Humira shots for 2nd dose) and my doc was able to give me that package for FREE. I think it counted as a sample or something, so ask your doc if they have any samples that you can start on before you fill your first prescription and then use the co-pay assistance.

It's worth a try, anyway....
 
Info

Hi Evereyone,
I am currently on infliximab but would like to ask a question regarding humira. How often do you have to go to the hospital whilst on humira? The reason why i ask is that i have to go every 2 months and this is causing a problem with my current employer.

Thanks
Adrian.
 
I'm finally starting my Humira tonight. Hopefully the pens with go over smoothly...Seems less complicated than self-injecting the Cimzia at any rate. Any tips for the first injections?

Glad to start something besides the Cimzia at any rate. Barely helped the Crohn's, but did a heckuva job on my immune system. I currently have shingles, it seems. (Right when school's starting back up. @[email protected]) So I've got my fingers crossed for a medicine whose benefits will outweigh the other stuff this time around.
 

My Butt Hurts

Squeals-a-lot!
adrian mcdonnell said:
Hi Evereyone,
I am currently on infliximab but would like to ask a question regarding humira. How often do you have to go to the hospital whilst on humira? The reason why i ask is that i have to go every 2 months and this is causing a problem with my current employer.
If the Remicade is working well for you, I wouldn't NOT switch meds. Your employer should be understanding, as it is a medically needed thing that you are doing. If you weren't getting treatment, you would likely miss MORE work.
Is there any way that you can get your infusions on a Saturday? I know that some infusion centers are open on Saturdays. Or could you go in the afternoon? I go at 1 pm so I only have to miss 1/2 day of work.
How is the Remi working for you?

Procyon said:
I'm finally starting my Humira tonight. Hopefully the pens with go over smoothly...Seems less complicated than self-injecting the Cimzia at any rate. Any tips for the first injections?
Congrats Procyon! I hope it works quickly for you!
My only tip is to press on the injection site for a little while afterward. This will keep the blood from pooling under your skiin and making a bruise.
If you have someone else that can do the injections for you, I did that and held my breath while the medicine went in. They say not to hold your breath if you are doing it yourself though. It is a sting, but SO worth it if it works for you. Good luck!
 
Ha yeah... don't hold your breathe if you are doing it yourself... my humira nurse that taught me told me she had a bunch of patients pass out that way.

I personally don't like pressing on it afterwards because for me it makes the medicine sting more. Once you get over the 4 shots and then the two its a piece of cake. Loading doses are difficult though, good luck!
 
Thanks. :)

I think I did alright. I was nervous that it didn't even go in with the first pen, because I didn't feel a thing. It stung a little bit afterwards, but not as badly as others seem to experience. Guess I'm lucky, haha.
 
Woohoo! Everything finally got approved and the drugs will be here tomorrow!

I am not looking forward to injecting myself a billion times for the loading dose of Humira and the initial dose of Methotrexate that I will need to inject myself also.

Excited to taper off the Pred with this also. In the last month at 40 a day I have put on 10 pounds. Still under weight a bit, but a big jump for my little frame in a month.

Excited and nervous!
 
YAY!

Yeah Procyon... sometimes you get lucky and hit a place that doesn't hurt... sometimes you hit a badddd spot though and it hurts REALLY bad. Its all in the stick.
 
I just started humira two weeks ago and did my next two next shots today. My tummy is a little swollen. I don't know if i'll ever be ok with sticking myself. It took me 30 minutes just to do the first one today. Does it get easier with time?
 

imisspopcorn

Punctuation Impaired
Once you are on maintenence, it is only one injection, so that is better. Can a friend or family member do it?
 
Went to my GI today and it looks like I will be joining the Humira Club! Should be getting my starter kit soon! They want me started within the next 2 weeks! I'm getting pretty nervous about the pain from the injections!! I'm not very good with needles and shots, although I guess I have gotten alot better since in the last 3 months I've been stuck more than I have in my life!! I used to pass out getting flu shots, so this could be interesting!! LOL

Has anyone ever had the blod clot shot in the tummy (that they give you when your in the hospital)? If so, does the Humira feel anything like that one? That one almost feels like a bee sting but a little worse, only thing is you can't touch that one afterward or it will bruise your entire stomach!!
 
I did my initial loading dose last night. It was not bad. I did two shots in the leg and two in the stomach.

The only problem is the pen tends to kick back a little so you really need to keep the pressure on till the little yellow spot show ups. The last couple of seconds stung a bit, but not bad. No bruising or bleeding.
 

imisspopcorn

Punctuation Impaired
Nic said:
Went to my GI today and it looks like I will be joining the Humira Club! Should be getting my starter kit soon! They want me started within the next 2 weeks! I'm getting pretty nervous about the pain from the injections!! I'm not very good with needles and shots, although I guess I have gotten alot better since in the last 3 months I've been stuck more than I have in my life!! I used to pass out getting flu shots, so this could be interesting!! LOL

Has anyone ever had the blod clot shot in the tummy (that they give you when your in the hospital)? If so, does the Humira feel anything like that one? That one almost feels like a bee sting but a little worse, only thing is you can't touch that one afterward or it will bruise your entire stomach!!
Yep! I had the Lovenox inj. in the hospital. Very similar pain wise......I found with the Humira, the loading dose of 4 inj. was the worst because after the 2nd shot, the adrenaline is pretty much wearing off, and I was a bit shakey. Can someone help you at home?
 
The only problem is the pen tends to kick back a little so you really need to keep the pressure on till the little yellow spot show ups. The last couple of seconds stung a bit, but not bad. No bruising or bleeding.[/QUOTE]

I just looked at my prescription, I'm getting the pens as well, so I will keep that in mind! Thanks for the tip :)


IMP-I think I'm going to have my hubby do it for me :/ But I really need to learn to do it myself incase he gets deployed! Although I will be close to my mom if he leaves so maybe I'll just ask her to do it :) I just know I'm bad with stuff like that and I don't wanna take a chance of passing out or something with the kiddos and just myself! I hate those Lovenox inj!! My loading dose is going to be done in my doc's office with the Humira nurse, so hopefully she'll keep me from getting shakey!

Got my TB test today and will have it checked on monday, so hopefully I'll get my meds shortly after that and can get started soon!!
 
whoops looks like i posted in the wrong thread..Joined the club on thurs. Did two in the stomach and two in the thigh. Neither of them hurt at all, I would say its no worse than getting blood drawn. Ive heard alot of different things about how long it takes to work. Anyone have it work immediately? The nurse said it does for some people..
 
I'm joining the Humira club officially tomorrow morning... The nurse is coming at 10 to load me up with my 4 doses. I guess I didn't request the pen, so my first 6 doses are syringes... that freaks me out a bit; I would have preferred the pen. Does anyone inject with syringes? I guess week 4 I will be able to switch... Nervous!!
 
Not excited about these shots!

I am SO nervous about the Humira shots. I really don't like needles and have to start in a couple wks!!! How much training did you all get before you were comfortable giving yourself shots? How painful is it? Do you let it warm up before you give yourself the shot?
 
I was told to take the medication out of the fridge about 1/2 hour before the nurse comes. So yes, you should let it warm up before injecting. I am nervous about how much training I will get for the injections and I am worried that I might pass out! I never imagined I would have to give myself needles. Ideally I would like the nurse to just administer the 4 doses but I know that's not gonna happen - I'm going to have to try it myself!! Aaagh!! I am supposed to watch an instructional DVD tonight about the injections but even that is making me nervous. I hope I can handle this.
 
Lemme know how it goes ya'll! I'll be starting in the next week or so :/ Very nervous myself!
 
OK!!!
I did it!!
I injected myself 3 times with the Humira syringes!!

It wasn't really that bad... actually, I think I will prefer using the syringes. It's quick and you can control it more... I was so nervous but the nurse was very patient and showed me the first injection. The worst part I found to be the stinging following the injection. So, now I'm loaded up with my 160mg, and in two weeks I'll shoot up another 80. Hopeful that this brings me some long term relief!! Now, just to get off of this prednisone...
 
I feel so stupid right now. I was doing my injection and I moved. Almost all of the humira went everywhere but in me. Has this happened to anyone else? What did the doctor say to do? I left a message for his nurse but no call back yet. I really feel stupid!:depressed: I really need this to get easier for me.
 
I've had my first 6 doses in the fridge now for 2 weeks and can't use them yet because I have a perianal abscess that just won't heal. It has been a month today since my abcess surgery and I'm just so frustrated! I was on 6-mp and it quit working so we added 40mg prednisone. Now I'm off the 6-mp to hopefully help me heal faster but so far it's not working and the prednisone just makes me moody and unable to sleep. I really hope this humira works whenever I FINALLY get to start it!
 
I will say that working with the Humira company was easy and just a fantastic blessing! $5 per month for the medicine is a God send!
 
Loading doses?

I have not yet started on Hmira. I'm still in the process of being diagnosed. But my GI doc mentioned starting on a biologic once it was diagnosed and Humira is the one that is covered by my insurance plan. I assume I'll start on that.

I've read a lot about people saying the loading doses are the worst. What's so bad about them as compared to the other times?

Also...does anyone know if the shots compare to allergy shots? I get those monthly and was curious if the pain was similar to those.

I am a very petite and thin person naturally and probably could be considered underweight right now since I lost about 7 pounds in the hospital. I worry I won't be able to find a "fatty" enough spot to inject the shots. The idea of injections in the arm sound more appealing than the leg or the stomach, perhaps because I am used to it already.

I know my worry is premature since I am not even slated to start Humira yet, but was just looking to gain more knowledge about it. Thanks :)
 
Well got my loading dose appt for next Thursday at 11AM! So I will officially be joining the club!! I've been feeling ok aside from some naseau, so I'm not real sure what the Humira is gonna do for me now...but hope my anxiety will go away and I'll feel like superwoman!! LOL
 
after reading through some of the posts i question how i'm being administered Humira.
It was prescribed by my Rheumatologist for Arthritic Pain. 40mg every 2 weeks. Now my GI thinks i should completely drop my Imuran for this. I'ved never done any loading doses, and according to my nurse, normally those who take Humira for Crohn's have a higher dosage then 40mg.
 
My understanding is that for Crohn's, you are started with a loading dose of 160 mg (4 shots) at Week 0, 80 mg (2 shots) at Week 2, and 40 mg every other week from there. Other things like psoriasis and arthritis are 40mg every two weeks from the beginning, I think. If you have already been on Humira for a while, maybe it builds up in your body and you don't need the loading doses now? Definitely run it by your docs and make sure everyone is on the same page.

OOooooh, tomorrow makes Week 2 for me!! That means two syringes, all by myself this time... Scarrrry!
 
So a question for those of you already using Humira...Did you all do your loading dose with a nurse at your GI's office or did you do it on your own? My appt is for Thursday and I can tell I am quickly going backwards as I've only been on Asacol for over a month now. If I can't get them to move my appt up then I'm gonna ask if I can just do it myself, I can't afford to end up in the hospital again!!!
 
Hey Nic, I did my loading doses on my own the second time they started me on Humira because I had already learned to do them with a nurse from my first go-round. I was spiraling downward my second time too and i was supposed to have a nurse come out to my home, but I said screw it and did it anyhow. (they couldnt get the scheduling worked out)
 
Thanks ya'll. I talked to my GI's office, they can't get me in sooner and they won't let me do it myself!!!! UGH! If I don't get feeling better I'm gonna be crawling into their office again and they are gonna send me across the street to the hospital and I am going to SCREAM at them! They will not like me afterwards!! LOL

The starter pack they gave me with the DVD and such says that you can have a Humira nurse help over the phone or in your home..dunno why they won't let me just do that!
 
They just shipped me everything in a big Styrofoam box with ice packs. I went home and read the box and shot myself up. With the Humira pens it is no biggie, surprised they are making you go to the Dr. for that. I had a tougher time with the actual syringes for the Metho.
 
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