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Crohn's Disease Forum

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CrohnsHobo said:
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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I don't know either! I have the pens, so I don't think it would be that hard. I also have a family friend, who is a nurse, that has UC and is on Humira, so I could have her help over the phone as well. But they said until I have training, I can't do it myself!

I thought for sure after I told them I felt like crap they would let me just go ahead and do it. One of the PA's called me about an hour ago and wanted to give me something for my cramps, told him that my cramping isn't killing me (as of yet..fingers crossed!) its the naseau, weakness and the forcing myself to eat thats getting to me..all he said was "yep thats your disease, sorry hun, hang in there until thursday & hopefully the Humira will work fast for you." I have no one to take care of my kids should I end up in the hospital again, so I'm gonna be really angry with them if that happens!!
 
Since I'm starting on thursday and I've been feeling pretty crappy, I'd really like to know ya'lls experiences.

When you first started the Humira, how long did it take before you started feeling better?

I've thought about asking for a month taper of Pred when I go in for my loading dose, so that I can at least get feeling better while I wait on it to work, but I really would like it to just work fast and not use the pred! Haha, wishful thinking!!

Also once/if it starts working and gets me into remission, will I start gaining weight back? I'm down to 100lbs now and I'm struggling to hold onto that! I'm not limited on my foods right now, nothing really bothers me, so it's not like I'll be able to eat a bigger variety of foods to help gain it back. My biggest problem right now is the naseau but I'm still forcing myself to eat. I'm not sure where any of my food is going, I eat and eat and gain nothing! I don't have alot of D either, usually soft almost solid, and 2-3 times a day tops.

Also, if I have inflamation will the Humira make that go away as well? I haven't been checked for inflamation in awhile now, but I feel like I am, I've got lots of pressure in my ribs and such.

Sorry so long ya'll! And thanks in advance for any answers you can give!
 
I can't say. I have already done three doses of Humira and five of Metho and I feel great, but at the same time I am also taking 20mg of Pred everyday. So not sure if it is the injectables or the Pred.

Dr. wanted to keep on the Pred for a bit to make sure the injectibles had time to take hold and kick in.
 
Humira order was faxed yesterday! This weekend I'm getting the chest x-ray and TB test and my old gyne is mailing me my hepatitis panel bloodwork so I can give it to my GI's office. I guess that means things are in motion and I'll officially be a part of the club soon.

They gave me a start kit and I practiced with the pen yesterday. Doesn't seem too hard though I noticed I have a hard time keeping my skin pinched after "injecting" the pen. Are you supposed to let go of the skin (while still applying pressure on the pen) once you click the pen or stay pinched until the injection is done?

I haven't watched the DVD yet. Maybe that will answer my question...
 
Actually you don't have to even pinch your skin if you don't want to. I thought I'd let you know that the fake tester pen is a bit more springy-feeling and a little more powerful feeling than the real pen is. Mine was at least. The only thing to keep in mind is once you press thee button, you gotta hold it in for ten seconds till the yellow clears the window. Mine hurt really bad sometimes and I just have to wait till I'm done injecting before I react to it.
 
That's good to know Katie. I was imagining myself slipping and accidentally injecting the needle into my fingers. :ylol2: I know everyone has their own preference, but do you prefer the leg or the tummy? I'm still trying to decide where I want to do it. Though I suppose I will probably do both when I do loading doses and find out then.
 
Leg... I will NEVER do a tummy injection ever again. I've tried it on two separate occasions (2 years apart) and both SUCKED. I know some people on here feel differently. Honestly I think it has a lot to do with the makeup of your body. When I inject higher up into my thigh in the fattier areas, it doesnt hurt. My stomach is fat too... but I dunno, it just hurt so bad. You'll have to figure that one out on your own unfortunately.
 
I always do mine in my stomach. I don't have a lot of fat or skin on my legs, but I can use my little love handles for the injection. As Katie said it does hurt a bit, definitely more than the regular syringes of Metho that I inject myself with.
 
CrohnsHobo said:
I can't say. I have already done three doses of Humira and five of Metho and I feel great, but at the same time I am also taking 20mg of Pred everyday. So not sure if it is the injectables or the Pred.

Dr. wanted to keep on the Pred for a bit to make sure the injectibles had time to take hold and kick in.
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Thats what my worry was, if I start a pred taper then we won't know if it's the Pred or the Humira that is helping me! I guess I'll just wait it out and see how it goes. I have an appointment for a check up on March 11th so if I'm not feeling somewhat better by then I'll go ahead and ask for the Pred.

Thanks!
 
I will officially be part of the club as of 11 AM tomorrow! I've been literally counting down the days cause I've felt like crap and my GI won't do anything until I start this, but now that it's here I'm getting SCARED!!!! I am so bad with shots, although I've gotten much better, and I've had reactions to every other medication so I'm starting to think it's gonna happen with this one!!

Maybe they could give me a shot of something to make me quit thinking before hand!!! :) LOL
 
Best of luck! Hope it works for you and don't worry to much. It is really a pretty minor shot. Even though the loading dose is four shots.
 
Nic - I'm the same as you. I worry and think too much about everything. I'll eb thinkin' about ya! If you survive your loading doses then I'll feel much better when my day comes :) Keep us posted!
 
Thanks Dream! I overthink everything too much it seems! I'll post as soon as I get home and let ya know how it went! Hopefully I'll sleep tonight!!
 
Wow! So I just talked to the pharmacy and my Humira is being delivered tomorrow! I didn't realize it was going to arrive so quickly. Now I'm just waiting to hear from a nurse to schedule an at home visit for my loading doses. Craziness! Can't wait to hear how Nic's loading went :)
 
Hey ya'll! I just got home about 20 mins ago. The loading dose went VERY well!! The anticipation and anxiety of it all was worse than the actual shots!! It does burn some, but it doesn't last long at all! My Humira nurse had me try it all different ways, 1 in the leg with Ice, 1 in the leg no ice and the same with my tummy, ice one side no ice the other. That way I could decide what I liked the most. Tummy didn't hurt near as bad and she said that would be better because my legs have alot of visable veins.

My right leg is still a little sore..happens to be the leg my hubby did!! She said he squeezed it and pushed down pretty hard so it might be sore!!

So all in all it was great! I would def recommend iceing it first, doesn't hurt as bad! After you push the button you feel a little sting then you hear a swish type sound, feel the slight burn and then it's over with! It's weird you can feel it going in where you're pinching!

Oh another tip she gave me was to rub really hard with the Alohol swab, said it dulls the nerve endings down some, and to make sure it dries all the way so it doesn't make the needle burn.

Thanks for ya'lls support! It definitely helped me to not go crazy before hand!!
 
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dreamintwilight said:
Wow! So I just talked to the pharmacy and my Humira is being delivered tomorrow! I didn't realize it was going to arrive so quickly. Now I'm just waiting to hear from a nurse to schedule an at home visit for my loading doses. Craziness! Can't wait to hear how Nic's loading went :)
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Glad you're getting it so fast!! Hopefully you'll get a nurse to come out soon! Wish one would have come to me, I had to drive over an hour away to my doc's office in the snow!!

Try not to think about it too much, hard I know :) I really worked myself up once I got to the doc's office!!! After the nurse did the first one it was cake from there!
 
Good tips, Nic! Glad it went really well :)

I wonder how late the nurses can come to our house? I kinda want my husband to be there in case I ever wanted/needed him to give me a shot, but he works kinda late (though I suppose it wouldn't be difficult to teach him once I know). Is your husband giving you your shots or just felt like joining in on the fun? ;)

Yeah, as crazy as it sounds to me now, the tummy might be better for me too because I think my legs have veins in them that might be hard to avoid.

Now I'm getting anxious!! Just waiting on the nurse to call me to schedule my appointment!!:ybatty:
 
Thanks!

Is it a nurse from your GI's office? You'd definitely be able to teach him, it's really easy. My nurse said they were dummy proof :) She even pointed at my 2 yr old and said he could do it!! LOL

I had my hubby give me one just in case I chicken out and need him to do it :) I also felt better having the nurse there to "teach" him as well, that way if he does do it later I don't have any worries! I think it was just fun for him LOL Everytime I'm in the ER or hospital he's always begging the nurses to let him give me stuff. He says it's because he gets all that kind of training in the Army and he wants to be able to try it, I think he just enjoy's torturing me ;)

I was stuck on the idea of doing it in my legs, tummy just didn't sound fun, but I think it was less painful than my legs!

Let us know when you get your appt!!
 
I think it's a nurse that Humira is sending out? I'm not exactly sure where they are getting the nurses from. All I know is I've been called twice my Humira reps and both said a nurse would be contacting me soon to schedule my in-home visit. Hopefully she is as helpful as yours was :)
 
I am surprised they just mailed me the drugs and said figure it out. lol No rep, no phone calls, no nurses.

My girlfriends mother used to be a nurse and she came over and showed me how to inject the methotrexate. The humira was pretty self explanatory.
 
JUST got a call from the nurse! I'll be starting Humira on March 2nd. Eee! Now I know how you felt, Nic. ;)

Just a random question...is it strange that the first medication I'm on is a biologic rather than something like azathioprine? It seems like many of the people on here were first treated with something like that before getting started on a biologic. Any thoughts?
 
My first time on Humira they sent a nurse out too. They have local nurses trained to administer Humira. Mine was nice and reminded me to breathe when I did it. I guess she has had a couple patients pass out on their first go 'round.
 
YAY! That's only 5 days!! The countdown begins!!

I was started on Pentasa, then Imuran/Azathioprine and now on to Humira. I read somewhere that some doc's just go straight to the biologic and don't mess around with the others. I can't remember the reason behind it now...I swear I've lost my mind today!! Maybe because you had an abcess?

I wish I could have went back on the Imuran. I've been wondering what I'm gonna do if the Humira doesn't work for me. I know I could try the Remi, but where would I go once that quit working for me? Not a whole lot left. I see alot of people on here who use Metho, but none of my doc's have even mentioned that one to me, so until joining here I had never heard of it.

CH-I can't believe they didn't have a nurse help you with the first ones! They said I couldn't do it without the Humira nurse training me first!

KatieSue-nice you had a nurse come to you as well! My nurse was in my GI's office over an hour away!! And of course every time I have an appt there we have some crazy snow storm, so today I was late..again!
 
Yeah, that makes sense, Nic. It could be because I had an abscess and the lower GI exam I had showed I had fistulas in the small intestine. So, maybe that's why. At my initial visit with him he had mentioned that the biologics and azathioprine would be the medications he would think to treat my condition. So, perhaps if the Humira doesn't work on it's on he might add aza? We'll see. It would be nice if the Humira did the job on it's own :)

I'm not familiar with metho either. I've heard of it, but what exactly does it treat?

I'm glad the nurse is coming to me too. My doctors office is 30-45 minutes away and I'm not as familiar with that area (or really Chicago still as I've only lived here a little under 2 years) as much since I don't usually venture out there. My husband usually comes with me to stuff like that since he is better at directions and my GI's office isn't open on the weekends and he works during the week. So, it works out for me :)
 
Nic said:
When you first started the Humira, how long did it take before you started feeling better?
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This is a question from a few pages ago, but I haven't caught this thread recently.
My Humira started kicking in on day 6 after the loading doses, then got a little better each day.
I think I already wrote this on this thread, but it was pages and pages back - if you go to www.myhumira.com , you can see an injection video, which I thought was very helpful.
I had my husband do the shots, and I held my breath (do not do that if you are giving yourself the shots). They really aren't that bad though. SO worth it if it helps your symptoms!
Another tip is to press on the injection site afterwards. It helps stop the blood from pooling under the skin and making a big bruise.

Congrats Nic and Dreamintwilight!!
 
Yeah, that's actually a tip I use after getting allergy shots, otherwise I'm definitely a bruiser! :) I'll be glad to finally start shots. All the anticipation is a little hard to deal with because I know it won't be too bad. I hope mine works as quickly as yours did!
 
I've been on Humira for three weeks now... and I'm feeling good. Only thing is, I am still tapering my Prednisone... so it could be due to that. I am down to 25 mg of Pred now... In the past, when I dropped down to 30mg I would get recurring symptoms. So, here's hoping!! Trying to stay positive... I am really hoping this does it for me, I would love to have some energy back.
 
So, I signed up for the free Sharps container for my used Humira pens, but what if it doesn't arrive by Tuesday when I have my first loading doses? The lady said it could take a week to 10 days for the container to arrive. Any ideas?
 
You can store it in a Tupperware container out of reach of kids until it comes...As long as you are the only one handling the sharps it is not a problem. I put mine in a coffee can (Syringes for B12) until I go to the doctor and then I put them in their sharps containers.
 
I think the Metho is for Crohn's..not sure though. Wow you got it quick!! I thought mine was supposed to be mailed to me but I ended up having to go to the pharmacy :) I ordered the Sharps container as well, hoping it gets here before my next dose! Good to know I can use a tuperware container if not!

MBH-Thanks for responding! I should have went through all of the pages :) I sure hope it works as fast for me!! I'm on day 3 and I feel like I'm kinda getting my appetite back without as much naseau as I usually have, I feel hungry ALL the time!!

I'm gonna have to try the pushing on it afterwards idea, I was pretty sore after my loading dose and bruised a little as well!!

Sharon-Glad you are feeling better!! Hope it continues!!

Only 3 DAYS Dream!!!
 
Nic said:
Only 3 DAYS Dream!!!
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Wah I know!! :runaway: I forgot to ask the nurse when she called me if she was allergic to kitties because we have three! Whoops, haha.

BTW, Nic...did you notice any difference after your injections? Feeling tired or anything? Hopefully other than a site reaction I'll feel fine :)

Another question for all you peeps. MY GI doc wants to see me every 3 months while on Humira and I'm supposed to get blood work done at my PCP's office every 3 months too. How should I sync up the blood work so that he has it when I go in for my office visit (in case he needs to talk about it with me)? The next time I see him will be around April, I believe, so should I plan to get my blood work like the week before to make sure the results are faxed in time for my GI office visit?
 
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crohnie2 said:
Yeah, what happens when Humira stops working?
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I really, really, dont want to think about that even tho I can control my symptoms okayish just with diet. But it isn't optimal.

Humira isn't some totally magic bullet - I still seem to have to be very careful about my diet, but it's made a huge difference to my quality of life and it's one of the best things we have. Loooong may it continue working, for us all!
 
Haha Well hopefully she's not allergic!!

I didn't have any injection site reactions, thank goodness, just sore. I was tired the day I got my injections, but I think that was just from the stress of the day and the fact that I had an hour car ride back and forth. And I didn't go to bed at the best time the night before :) So I don't think it was from the Humira, I think it was just me!! My nurse said that she gives them to herself in her car on the way to work (she's been doing it for 2 yrs), so I guess it doesn't cause too many side effects.

Maybe call your lab and ask them how long it takes to get the results back from your bloodwork and then decide from there when to go. I would think going before you see your doc would be best, that way he can let you know what they show. I like to know everything that comes back LOL I actually need to call my doc and find out if I need to have bloodwork done as well, they didn't say anything about it.

2 MORE DAYS!!!
 
So, tomorrow is THE DAY! I just got back from finally getting my chest x-ray. Thank goodness. Last thing to do!

Nic - how long did it take to do your shots? I'd imagine she couldn't be over here longer than an hour and that even seems like too long. Is it basically inject and done?

Hope you're still feeling good! :)
 
Yay!! Tomorrow!!!

I guess we were in there for about an hour or so, but we did a lot of talking! She started by taking my wieght and blood pressure, then we all washed our hands and started injecting!! LOL That part might have taken 15 mins or so, if you don't have any problems giving it to yourself then it shouldn't take long, I hesitated for a few with the first one I did! After I did them all, she made me sit there for a bit to make sure I didn't have a reaction and then to wait for me to cool off so she could do my blood pressure again!

It's gonna be quick and easy :)

I'm feeling ok, ate Taco Bell last night and I'm now realizing that wasn't the best idea :/ Usually doesn't bother me, but after how great I was feeling the last couple days, I'm noticing a difference. I know it's impossible for it to work fast, but I feel like my naseau is gone already, I've been able to eat alot more and just generally feel a little better! It's got me excited to see how I feel when it's really working! I went outside yesterday and played in the snow forever with my kiddos! I've only been able to do that 1 other time since the snow stared, which was months ago, usually just sat out there and watched them play!

I hope tomorrow goes good for you!! Let us know as soon as you're done!!! I'm so excited for you!! Good luck!!
 
Yeah, I'm really anxious to get it done tomorrow. All the anticipation is really making me all antsy, haha. I know it will be fine, but I'm ready!

I'm glad to hear how well you are doing on it!! :) It makes me excited about taking it and a lot less worried. I can't wait to eat more veggies and fruits :) I bet it feels great to be able to play with the kids and not feel awful. So good to hear!

I will definitely post as soon as I'm done and the nurse leaves. She's coming sometime in the mid-afternoon, so I will post then. Yay!
 
Good Luck Twilight!

I'll be pulling for you.

I just saw my doc and all the paper work and prescription are in and done.

I'll have my first set of injections at the doc's office in 2 weeks.....yeah!

Please keep us posted on your impressions of Humira.

Lookig forward to your report and progress!

Good Luck
 
Alright...so I'm getting REAAAALLLLLYY antsy! My nurse said she had an appointment at 12:30 before me about 30 minutes away from where I am approximately. If it takes about an hour then she SHOULD be here around 2 pm. That gives me about an hour and a half give or take!! Can you tell I'm a clock watcher right now? Haha...
 
Haha! You sound like me! I got to my doc's late so the nurse went to lunch and I had to wait for her to get done, drove me CRAZY!! LOL I kept looking at the clock asking my hubby what time they said she'd be done!

Don't forget to take it outa the fridge for about 15-20 mins before you do it! Kinda hard when you don't know exactly when she's coming! I actually had mine out for awhile before I did it, about an hour I think.

Good Luck!!
 
Thanks CrohnsHobo :) I know I'll be fine I just always have the tendency to worry and get anxious about anything new ;) God bless my husband for putting up with me, haha!

Nic - That would have killed me waiting in the doc's office, haha. Yeah, well the lady said she would call once she was on her way. So, she shouldn't take longer than 15-30 minutes to get here coming from the city she'll be in. I figure I can take the meds out when she calls me :)

I'm still trying to decide whether we should do it in my bathroom or dining room. I have 3 cats who tend to be curious :) Wouldn't want them knocking anything over! BTW....I think it's time to update your signature! ;)
 
So, I made it! I survived :) Glad it's over with. The nurse was really nice. She loved my kitties, hehe. She said I did so well that she doesn't need to come back for the second time. Yay! It did sting when the stuff goes in, but nothing I can't handle. So glad I can breathe now, haha. Now to see if it works ;)
 
Hey Marisa, so glad to hear it went well! I was thinking about you at work today. I was much the same way - really anxious but when it came down to it, it wasn't so bad. And now you're good for two weeks... I found my first injection of Week 2 was easy, but when I had to do the second injection I hesitated and it made it worse... Can't wait till week 4 when it's just the one injection, it'll be a piece of cake! :D Mmmmmm cake.

Go Team Humira!
 
Aww, that was nice that you were thinking about me :) Yeah, I was thinking today about how it'll be nice to only have to do one injection a week. Something to look forward to ;)
 
YAY! I'm so glad it went well for you!! I haven't been able to get back on here until now to check on ya and it's been driving me nuts! My hubby grabbed my laptop and I had to tell him he had to wait!! LOL

Not nearly as bad as you think it's gonna be huh? I'm kinda nervous about doing the 2 injections at home!! I know I'll be fine, but still nervous about it!! Can't wait to be down to 1 as well!!

Ha I guess I do need to change my signature, officially part of the club now :)
 
Hahaha. Yeah, it wasn't too bad. It did hurt a little, but I'll look forward to the one injection for sure. I did all 4 without ice too! Legs definitely more painful than belly. I have lotsa veins in my legs too.

Yah, I guess getting all 4 at home makes doing them by myself in 2 weeks better. You'll do great. You can always have the hubby do it! ;)

Do you have a Facebook? We should keep in touch on there :)
 
Ooo without ice huh? Nice!! I didn't try one in my tummy without ice, after my hubby doing the 3rd one in my leg with none, I chickened out!!! LOL Maybe I'll try it with the 2 next time, that way if I don't have ice I know I will survive!

I might end up having him do it! Although the one he gave me at the doc's hurt like hell, so maybe not :)

I do have one! That's a great idea!
http://www.facebook.com/#!/nicole.servello?ref=profile
 
Yeah, my nurse actually didn't even suggest it so I was like "Alright, well let's see how it is without ice." Haha. The 3rd one I did was in my leg and that one hurt the most. I think I was squeezing my leg too hard or something. Yeah, I was thinking of letting my husband try and do one of the injections next time, but I think I like having the control over it, haha. Strike that idea ;)
 
Alright! Week 4, another shot... can't say i notice anything yet, although I have tapered my pred to 15mg, and I haven't had any symptoms.

On another note, does anyone take advantage of any rewards programs with their prescriptions? I think Ontario is the only province in Canada that doesn't participate... but I get Airmiles on my Humira. ALOT of airmiles. Like, enough for a free flight to Australia per year. Or three trips within Canada per year. I figure, it sucks that we have to deal with this disease... but these airmiles are a pretty cool bonus. But it's only availabe if I get my prescriptions through Safeway. What other bonuses are out there?
 
I haven't heard of any bonuses yet, but perhaps I am still new? The only thing I can think of is the $5 copay I pay instead of a ton of money.
 
Yeah I'm on the Humira Copay assistance program as well which gives me 5 dollar copays. Otherwise I'd pay 50 dollars a month as thats my insurance copay.
 
Newest member of the club right here! Just started Humira today after Remicade started losing its magical powers.

The nurse did one in my stomach, then I did one in the stomach and two in the legs. I think I prefer the legs, to be honest. My nurse pointed out to make sure to inject in the top of the leg, though. As you move down the side and along the back of the leg, you get a higher concentration of nerves and greater chance of hitting muscle. I don't know, but I think it worked for me.

A lot more convenient than Remicade, though, which is a plus ...and easier for me at least. Especially when the Crohn's dehydrates you, and it takes the IV nurse three or four pokes to get a good vein. Good god, that sucks!

Hoping this works, though ...I'm hearing good things from you guys!
 
Just checking in with me fellow club members - How goes the Humira treatments?

I started Humira 7 weeks ago... and I can't say I've noticed an improvement. I have tapered my pred to 5mg now, but symptoms are returning. My doc has told me to keep the 5mg pred going for two more weeks - argh, I was really looking forward to being off the stuff!! But he says two more weeks might give the Humira time to "kick in"... but I'm wondering... should it have kicked in by now?? How long did it take until you noticed something? I am still really drained for energy, having 4-5 BM a day, and occassional blood and mucus, bouts of nausea and tummy pains. I'm still better than I was when I was flaring but I am thinking that was the steroids that got it under control. If I had to use a scale of 1-10... when I was flaring I was a 1.5 or 2 overall, now I would say I am still only 5 or 6...

Anyway, I'm not going to give up on Humira yet... send me some of those positive thoughts!!
 
I think it's working well for me. Either that or I'm just eating a whole lot better than I was before, which could be true. We're cooking about 6 nights a week now, thus minimizing the amount of processed foods we're consuming. But, I have been feeling really good. Haven't had stomach pains since St. Patrick's Day. Tomorrow is my first maintenance shot. So, I've been on Humira now for a month. I'm hoping it continues to work well. I've only had really bad stomach pains twice since being diagnosed and going on medicines. Looking back on when I had those cramps they seem to be around the days I had shots. So, perhaps my body is adjusting to the lesser amounts each time.

Don't give up yet Sharon! The Humira nurse that came on my first loading day told me it can take up to 4 months to fully see the effects. Do you notice more symptoms each time you taper? Perhaps your body just needs to adjust to less medicine. Of course, if your pain gets worse definitely don't hesitate to let your doc know. Have you thought about probiotics? I started taking it recently and I suppose it could just be the Humira, but I feel like it helps my digestion after I eat (the brand I take requires me to take 3 pills before or after each meal). A lot less gurgling and stuff.

Keep us updated. Hopefully your body will take to the meds soon :)
 
I think it's working alright for me. I do have some concerns, like I can feel it wearing off at the 10day mark so it isn't really lasting the whole fortnight. But... having said that you'ld have to take my injectors away from my cold dead hands!
 
Thanks for the suggestion about probiotics, Marisa, I just might give those a try. I'll definitely keep up with the Humira... with fingers crossed. Also, I have been eating a bunch of crap lately so that could be contributing to things.

And Beth, my doc said it is possible to prescribe Humira every week or 10 or 12 days... have you asked your doc about more frequent injections?
 
Such a horrible sting!

Ouch! Just gave myself 2 of the shots. Did 4 shots a couple weeks ago. These sting SO bad. It takes me about 15 mins to give myself the shot because I keep debating when I should insert the needle. Hopefully my symptoms will start to improve so that the sting will be worth it! At least I have two needle free weeks!
 
Where are you doing them crohnie2? Some people get on better in the thigh, some the tummy... Try icing the area you are about to inject into with a freezer block wrapped in a towel, or similar.
 
My daughter with Crohn's is starting Humira tomorrow, she's been on Prednisone and is weaning off but it doesn't seem to be working so that is why he's switching. She has also been on Pentasa since starting Prednisone in Feb. I'm wondering if people on Humira are also on something like Pentasa or if he will take her off of that. Just wondering ahead of time and what other people have been on with Humira.
Thanks,
Tammy
 
So far I've been on nothing else. I've only been on Humira a month though. Seeing my GI doc in a couple weeks. So, I'll find out if he plans on putting me on anything else in combination with it then. The Humira seems to be working pretty well on its own though it seems. My stomach has been feeling a lot better!
 
I am in month 2 of Humira, after my Remicade wasn't working anymore. I loved Remicade and was hoping this would work. I seem to also have Crohn's related arthritis and the Remicade was like a miracle cure. I'd feel that part of it in a day. I was hoping the Humira would do the same, but so far no such luck.

Someone earlier asked how long does it take to know if it works, but I hadn't seem a reply. I would be interested too. So far, it just seems like I'm just getting worse.

I also have a lump and a sort spot which makes sitting uncomfortable. I had a lump before, and went in to have it checked but she thought in-grown hair (I don't think it wasn't an ingrown hair... but it did go away, so I didn't worry about it... and later heard of a gland that sometimes enlarges.). It had gone done quite a bit by the time I went in after taking a long hot bath the night before. This time the bath didn't help that.

Any similar experiences?

Best to you all!
 
chelsmom said:
My daughter with Crohn's is starting Humira tomorrow, she's been on Prednisone and is weaning off but it doesn't seem to be working so that is why he's switching. She has also been on Pentasa since starting Prednisone in Feb. I'm wondering if people on Humira are also on something like Pentasa or if he will take her off of that. Just wondering ahead of time and what other people have been on with Humira.
Thanks,
Tammy
Click to expand...
My doc has kept me on the Asacol HD with the Humira. He said maybe later I can come off of it, but until we get me into remission he wants to "protect" my colon. I've been really bad at remembering to take them lately tho, so he might as well take me off them!!! LOL
 
I think the Humira is working pretty well for me too!!! I do have a few down days here and there but nothing like they used to be. I apparently ate something a couple days ago that didn't agree and I only had 2 bathroom runs and the second one was a fake!! Hehe :) I really only have problems for a day or 2 after my injection. I do them on thursdays and usually friday and sometimes saturday I feel run down and crappy. My GI said that was a pretty normal reaction tho and I think I can deal with that in exchange for feeling good afterwards!
I am eating like a pig now too, but I'm still not gaining any weight...can't figure that one out! I'm also so full of energy some days that my hubby has to tell me to chill out!! Haha!
All in all I'm SUPER glad I started the Humira!! I just hope it keeps getting better!!
 
Nic - Maybe you're not gaining weight because you're more active than you were before :) I know when I used to actually work out I'd eat 2 dinners and I wasn't really gaining weight, except for what I gained in muscle! I'd say at least it's good you aren't losing any! So glad the Humira is working for you!
 
chelsmom said:
I'm wondering if people on Humira are also on something like Pentasa or if he will take her off of that. Just wondering ahead of time and what other people have been on with Humira.
Click to expand...
I was on Pentasa at the same time that I was on Humira. I was also weaning off pred at the same time.

I think if you can get any type of additional boost, it's worth it to stay on the milder meds. I am still on Pentasa with Remicade now.
 
Hey fellow Humies (Humiries? Humites??)...

Anyone else have crazy itchy injection sites?? I am going out of my mind, and putting ice on the spot is only temporary relief... Just wondering how common it is to have an itchy spot and how long it lasts... My last one was itchy for almost a full two weeks and then it stopped, but now the new injection site is soooooooo itchy... My first 6 injections had no reaction whatsoever. The most recent injection site is on my stomach, the one two weeks ago was on my thigh.
 
I haven't necessarily noticed itchiness at the injection site, but I have noticed sometimes the trunk of my body is itchy. I'll end up scratching myself in the shower and I'm all red. I thought maybe it was because my skin was dry so I put lotion on. I haven't noticed it recently. Are yours red and itchy or just itchy? Any inflammation? Maybe give your doc a call. Hopefully you're not allergic or anything.
 
Yeah, red and itchy, and swollen... kind of like a hard bump, like a really big mosquito bite (or blackfly bite)... I called my doc's office last week to tell him but I guess he wasn't concerned because he hasn't called me back. I called the Humira 1-800 line to report it to them last week, I'll have to call them again to tell them that this one is reacting, too. It's not enough of a reaction to stop taking the drug, I don't think... it's tolerable, but unpleasant. I haven't noticed any other effects or itchiness elsewhere on my body, just at the injection site.
 
Yeah, I mean I know that that is the most common side effect from the shots. But it doesn't say if it is something that should indicate that you should stop taking it. I suppose if the doc doesn't seem concerned that's good. But, hopefully you can figure out something to relieve the itchiness. That would drive me crazy!
 
Oh hey! I get those too, always have. Myhumira and both GIs I've had weren't concerned about it. Its just annoying. Benedryl cream helps a bit. Minare a big itchy welt. About the size of a silverdollar or larger. Mine lasts for 4-5 days
 
Well, that's good to know... I knew it was a common side effect but wanted to hear it from someone else... This last injection wasn't that bad, the itchiness only lasted 5 days, instead of 2 weeks.

On a related, and positive note... I may be noticing something with the Humira. I am constipated, and I haven't been constipated in YEARS. Definitely going to have to up the water intake to help solve this problem, I don't want to end up with a fissure again. Tummy is still rumbling a lot, but no diarrhea!! Hurray! Fingers crossed that it's the Humira and not some coincedence. :p
 
Sorry you are having the itchiness Sharon! But Yay that it's finally giving you some relief!! I think I've been pretty constipated on it as well, I go back and forth tho. Some days I'm normal and then I get close to that womanly thing and I feel all stopped up!! LOL Hope the itching gets better for you soon and you keep getting better!!Marisa-You know I didn't think about being more active now and the weight gain stuff. That's a good thought! I'm not having the diarrhea so I thought I would be gaining more...and since I'm not having any I'm wondering where the heck everything is going!!! LOL My hips and belly will prolly swell up outa nowhere and then I'll finally know! Ha!
 
You know I've been feeling kinda constipated too. This last flare especially. Maybe there's something to that. I've been gaining my weight back slowly too. Up to 108 now! Woo!
 
Hi All

I'm about to join the Humira club! Just as soon as the rigorous approval process is finished.
Several years ago I tried Remicade, but the second dose sent me into anaphylaxis. Fun times. So that was the end of that.
I'm excited to start on the Humira, but I'm still a bit apprehensive. Of course I do know that they are different drugs and I shouldn't have the same reaction. Once bitten, twice shy.
Anyone else have a similar experience?
 
Just started

I just started on Humira last friday. I had the first four injections at the docs office and i'm scared b/c my ins hasn't even approved yet. My dr originally wanted me on Cimzia but it had been a week and hadn't been approved so he threw a fit at my last appt and they had a Humira starter kit in the office so he said he wanted me on it right away and they took me in the room and showed me how to do it. He said he is sure he'll have no prob w/ins but i'm so broke and sick of dealing with the crap already it's just annoying.

Anyway...as far as how i feel, i'm not sure.I was taking 150 azathioprine/day but my dr stopped that two weeks ago and upped my prednisone to 30 mg/day so i think the pred helped slow the D a bit, but i have been so gassy feeling and uncomfortable that i haven't been sleeping well, and have been having very bad pain and crazy noises. dr changed my pain med from darvocet to hyrocodone but i dont think it works as well b/c my pain level seems higher these last few weeks. It hasn't even been a week yet with the humira but i am super hopeful and excited, and ready for something to work.

I'll keep you guys informed :)
 
Bye,bye fellow Humies.....I'm leaving you for the Remicade club..Hmmmm but I'll keep an eye on you :)
My GI wasn't satisfied with the progress/result Humira gave me after approx. 4 months of treatment and suggested that we switch to Remicade - especially after viewing the report from the last colonscopy which had a better result than in October last year but not good enough ???. I must admit that I get the feeling that the effect after taking my bi-weekly shot wasn't noticeable anymore - even when we changed into taking it every 10 days, sad but true. However hopes are that this different med will do the trick - its worth a try !?!

See ya,
Uli
 
I'm diving in the Humira pool tomorrow evening!

My GI doc will administer the loading dose of 4 shots.

I'm thrilled and yet scared. But I'll get over it.
 
Yes, once the first doses are done a lot of the fear goes away. That's how it worked for me. I'm in the hospital right now for a flareup/bowel obstruction and they're talking about upping me to weekly shots instead of bimonthly. We'll see what my GI says once I get outta here! :)
 
Boo the sent me three months of Humira yesterday and they sent the Syringes this time instead of the pens. Pens were so much easier to do.
 
Well the deed is done. It was easy and virtually painlless.

I tried the stomach and leg. I think I like the leg better. No welts or raised red area.

OK. now let's see if it works!

Thanks for the support.
 
I don't know if I am maybe being a bit hypochondriac here, I probably am but figured I would write it down in a post, that way if the problem persists I can look back and find the date...

My fingertips have been going tingly. Never had this sort of problem before. Very uncomfortable and shaking my hands around to 'wake' them up doesn't work. Only for two days now. Could this be stress related? I'm in the middle of a very intense two weeks at work.
 

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