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Crohn's Disease Forum

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Follow-up report:
I had my second loading round (of two Pen shots) a week and a half ago and am due to start my normal dose this weekend. I did both of my last two injections in the abdomen. Surprisingly, I barely felt the first one. The second one was a return to the Humira I remembered: a bit of a bitch. As I mentioned in my first post, I have a thin, semi-muscular build. I feel like my least painful injection experiences have been when I positioned the Pen in the center of one of my middle "abs" (and after letting the Pen warm up for a half hour and allowing the alcohol to dry completely).

I finished tapering off the prednisone entirely a few weeks ago. Since then, I've developed some annoying (though manageable) joint pain in my neck (which I initially attributed to a car accident from a year ago, but which I began to believe was due to the prednisone taper when it got worse after months of virtually no neck pain). I'm hoping the neck pain will disappear soon.

I've had zero GI issues for the past month and only the very occasional mild loose stool for the month or two before I started the Humira.

I'm not sure if it's the Humira working for me now, or if the Crohn's is over and/or in remission (permanently, one can hope).

My doctor has me on no special diet at all, which I'm happy about. I'm a terrible eater, so perhaps it would have done me some good to have been bullied into healthier food.

JoeyK said:
Hi all, I just discovered this forum and have been reading up on this thread tonight, as I just started my Humira Pen treatment today (4 doses = 160mg).

Ouch.

I have a slim/muscular build with very little fat on my body, which could have contributed to the pain. I tried various spots in my abs, small love handle area, and thighs. They all hurt, even though I let the shots warm up for about a half hour. Icing didn't make much of a difference.

Anyway, hopefully they'll work for me.

Since being diagnosed (post colonoscopy) with Crohn's in June after brutal cramps, frequent and strained bowel movements, and a loss of almost 10% of my body weight, I've been on Prednisone, first at 30mg/day and now down to 10mg/day. I'll taper down to 5mg next week and then go off it the week after. Within 2 days of starting on prednisone, I felt not just normal, but like a million dollars. (Steroid high, I guess.) Per my doctor's predictions, I started eating 5000+ calories a day, and (also per her predictions, based on my body type), unfortunately not gaining an ounce until I tapered down to about 15mg/day. My eating habits are back to normal now with the same diet I'd had before I got sick. I've gained back about half the weight.

Humira was a bitch to get approved for. I'm in the independent market for insurance, because I'm self employed. I'm very much not indigent, but my insurance prescription benefits cap out at a few thousand dollars a year (the individual market plans virtually all do this), so Humira was going to come out of my pocket (to the tune of $2-3k a month, even after their assistance card). I called the Abbott Foundation, and although I was told I was "beyond their normal threshold" over the phone, I was nonetheless approved within several days of applying, and at no cost to me at all. I feel like I got lucky, and for my unexpected success I'm grateful. Maybe my quick mention of large student loan debt impacted the decision?

While I was waiting a month to get the Humira issue worked out, first fruitlessly with my insurance, then with the Foundation, my GI doctor told me to stay on the Prednisone, but didn't give me a lot of updated advice re: tapering. I self decided to bring myself down to 10mg/day (at 5mg taper a week), and she was shocked I was feeling fine and encouraged me to go back up to 20-25 mg/day until the Humira worked out. I declined, as I hate drugs, and I've been feeling mostly fine, with the exception of one loose-ish (but painless) stool once every ten days or so.

I'm hoping I stay healthy (and feeling as good as I have for the past two months) as I switch out of the Prednisone and into Humira. I'm also hoping that after a year of this, my GI doctor will let me switch off of Humira and into a less intense (read: injection-free) treatment.

In any case, I'm just introducing myself here, and I figure I'll be lurking over the next few months as my treatment progresses.

Have a great night.
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Hey Guys, just thought I should make a post here.

Started humira 2 days ago. First injection was a mess. Turned up a my GI´s clinic to recieve instructions from a nurse. Injected myself in stomach(only 1 dose since my gut is currently in remission but I need to take humira for my back problems). About 1 minute after injection I passed out. Woke up 30 sec later and found myself lying on the floor don´t knowing where I was or what I was doing. The nurse called for backup and my GI sent me to the ER. After a few hours of sleep in the ER I was told I had suffered from a vasovagal reaction. What are the odds....!

Just happy that it wasn´t the humira that caused this. What I have noticed so far that I assume is due to the medication is a sudden lack of initiative, problems focusing my mind on something, and short term memory loss. Also have a tingeling sensation in hands.

Will be interesting to see what impact these side effects will have on my university studies this coming semester :S Just crossing my fingers for it to get better or that I somewhat manage to live with these things since I really need this medication to work....

Hope you´re all doing great on humira!
 
Joey - glad you are doing well with the shots. I found my new favorite spot for injections is in the "love handle" area (though I do not have much!). It's virtually painless for me in that area! Congrats on reaching your maintenance dose schedule! That's always a relief :)

From what I've heard of others tapering off Pred, the joint pain should go away eventually. It just takes your body a while to get rid of the remainder of Pred and normalize.

I wasn't on too strict of a diet once I started Humira either. I tried to stay away from things with skins and seeds and eased my way back into things with heavy spices. But don't worry...if you're diet doesn't agree with you, you'll soon figure it out without the help of a doc telling you what to eat! Hehe Trial and error ;)

Scott - Wow! That certainly is an experience! Hopefully it was a one time deal and something related to the injection isn't triggering the fainting! I've passed out once and it was a weird experience, but it wasn't related to my Humira injection or anything. different circumstances.

Have you discussed those side effects with your doc to make sure they are normal? I haven't heard some of those being related to Humira use. If so, hopefully they'll go away after a while once your body normalizes. If not, I've heard some people talk about registering with their school's disability program. That way your professors know what your condition is and may be more understanding when it comes to giving you extra time to complete tests and things like that. Hope it works for your back pain as well :)
 
Well I guess I belong to this club too, just haven't had time to join before now...lol :redface:

I have been on Humira since July 2008 (was on Remi prior to that, but built up antibodies, so had to come off it).

I thought the Humira was doing very well for me, and I LOVE the convenience of doing it at home on my own rather than making arrangements to go out to have it done.

However, a sigmoidoscopy done last week revealed either no progress or possibly worsening of the CD in my rectum, plus another spot a little higher up, which is kind of weird, because I don't really have any pain in my gut; it's the rest of me that is falling apart!! LOL!!

Soooooooo back to the specialists in September to see what we are gonna do about all this... colonoscopy is a strong possibility more to settle some very nasty fistulas rather than the intestine itself, but it will allow the intestine to rest a bit too, so maybe that will help. Plus I started a short course of prednisone (yay) this week, so I guess we will see how it goes....

Hopefully things are working well for the rest of you. :)
 
The other day I took my syringe out and forgot about it for an hour and then did my injection. Has anyone else done this? Normally I start worrying if I take longer than 10 minutes to inject. I know how fast proteins can denature if they're at different temps without the target to bind... although it is at body temp once it's inside you. I guess I just worry too much.
 
Oh noooooo... I think my humira has given up on me :(. I'm taking it once per week, but I have felt like crap for days now. Bloating, some nausea, panicky, weak, no energy, pain and pressure. Feeling a little upset.
 
weekly shots for a month now. It was helping so much with nausea and LRQ pain. I have recently developed a abscess? right by the poop chute :( it's small for now, started about a month ago. The nurse threatened cipro/flagyl again, but I reminded her that the GI dr. wanted to up the humira dose once a week to see if that helps.

I think the cipro has given me tennis elbow or some tendon problem, my elbow, wrist and arm are painful!!

But the good news is, I'm seeing a dermatologist on monday, he can hopefully confirm what these bump things are.

Bad news is, I have to get all my wisdom teeth pulled Oct. 2nd :( Hoping my innards heal up by then.

Thanks for replying Marisa, I have always enjoyed reading your supportive posts.
 
Hmm, well yeah,, if you have developed an abscess, I could understand why you are experiencing pain regardless if the Humira is working or not! don't give up on the Humira yet. If you do in fact have an abscess, you may just need to get that treated first before you feel the complete benefits of your shots. Hopefully the dermatologist will have something useful to add!

What other meds have you tried besides Humira? I know a really good combo is Humira and Imuran (if you are able to tolerate this med). That's what I am on right now including the weekly shots of Humira. My doc said I won't be on the Imuran forever or weekly shots of Humira, but he's hoping it will kick me into remission and then I can think about tapering off some of the meds to a maintenance dose. OF course, I am not a doc and everyone is different, but could be something to discuss with your doc if you haven't tried it. But, I think if you have an abscess, dealing with that first is probably most important. It could just be that that is making you feel crummy and once it's gone you'll be better.

Hopefully you get some answers figured out! :) Keep us updated.
 
Hey everybody! Been on Humira about 8 mo. now & it worked so well 4 me
I almost 4got this is an incurable disease!No,I didn´t have another flare-up.I`m doing quite well,actually.My weight is back up,I feel great and I´m symptom-free...which is why I temporarily 4got how helpful this forum was to me when I was feeling hopeless.I never really wrote very much ,but just reading about other people going through the same thing was such a comfort,not to mention a wealth of info!
Once I started feeling better,I guess I thought I didn´t need you guys anymore,or maybe I wasn´t sure how people who are still suffering would react to me being here symptom-free.
Then I got an e-mail inviting me back here and after reading thru a few posts I remember why I felt so at home here.This is the only place where we all get each other.Not even my wife & family can truly understand as only someone who has been there can.
Anyway,I just wanna say it`s good 2b back & I hope I can be of some help to someone once in a while.
Peace.Love & Good Health!
Dwayne
 
That is great news Dwayne!!! It's so good to hear stories like yours.

Marisa, As of right now I'm only on the humira once a week. They want me to go on the cipro/flagyl again if this doesn't work. The abscess always came back after the 2 courses of cipro/flagyl, and I can't do anything while I'm on it. It make me feel that bad. In the past I have been on asacol, pred, azathioprine, pentasa, entocort and losec.

I will update after Monday's Derm appt.
Thanks again
 
So does this stuff work as well as remicade? There is a possibility I go on it soon.

I had remicade for 7 to 8 years and have stopped responding. Anybody know if this makes it more likely that I will respond to Humira?

edit - sorry i'll read through the thread....
 
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Poppysocks,
I have only been on Humira and it's worked pretty well for me. Good Luck and lets us know if you start the Humira.
 
I took my second loading dose of Humira on Monday. Two shots in my stomach which just felt like two shots on my stomach "how good can that feel, really." I am feeling better than I have felt since being diagnosed 10 years ago. Most particularly better than the last two years which I can only describe as HELLISH.

My crohn's is in the terminal ileum that causes extreme Diarreah and pain and scar tissue in the small bowel. My treatment started with asacol then prednisone then pentasa then prednisone the 6-MP, then toxic liver then more prednisone. The only thing that really worked for me was prednisone. I tried entocort but it didn't work. So my GI kept me on prednisone for a long time until he decided to try me out on remicade.

I started remicade in April of 2009 and began tapering off prednisone which took about 7 months. Every time I would get below 15 mg. Of prednisone I would suffer severe joint and muscle pain so I'd go back up. Finally I bit the bullet and got all the way off. The remicade put my gut issues in remission but I had debilitating joint and muscle pain to the point of being pretty much housebound. The remicade worked great until I started getting sinus infections, bronchitis, colds, you name it if it was a bad germ i got it. The join and muscle pain continued to worsen unti I finally had to change GI docs because he didn't know what to do with me.

My new GI started me on Humira and within 4 days of the initial loading dose the joint and muscle pain was gone. I am still not sure I believe it. For two years I felt like I had the worst flu imaginable and now to resuming what I kind of remember as a semi normal life. I have gone out shopping, gone out of town for a meeting, cleaned house and played with my grandkids.

If I wake up tomorrow and the pain is back I have had a great couple of weeks. Of course in my fairytale life that is not going to happen. I am going to ride this humira ride for all it's worth!
 
Looks like I'll be goining the group. My GI doc is recommending Humira as my first Crohn's med. What do you mean by "loading doses"?

How well has Humira worked for you guys?
 
Straight to Humira, that's pretty good going.

The loading doses are a regime to get the amount of drug in your system up to a useful level as quickly as possible. It's just 4 shots over 1, or 2 days, 2 weeks later another 2 shots, and then 1 shot every other week.

It's good stuff :)
 
Hi gang,

it's been a little while since I posted here.

After being on Humira for 4 months now I can say I have no Crohn's symptoms at this time. The fisutla (perianal) still goes through a up and down cycle, based on the Humira timing. BUT, I have been feeling fantastic and strong. Heck, I'm even pooping 1 time a day and it is fully formed!!!

My wife and I decided to go on a Carribean cruise to celebrate and for me to somehow repay my wife for her undying support.

We traveled on Royal Carribean and they were extremley helpful with any special needs. They provided a medical refrigerator for the Humira and a sharps container as well.

Two days after my injection I noticed the feeling of a swollen gland the next day and ear ache on my left side and a low grade fever. I returned home and called my GI doc. He advised me to start Cipro and Flagyl to be safe. The GI doc did not think that the Humira had anything to do with the situation.

I saw my GP and he confirmed that I did have an ear infection and prescribed Amoxicillan and to stay on the flagyl, because of a previous C.diff infection.

The concensus is that I had the bug in me before I went on the cruise and the Humira lowwered my immunity and allowed it to come forth.

Anyway, had a great time and if possible we'll be cruising up to Nova Scotia next month on the QM2!

Regards to all, Mike
 
Mike,
Sounds like you and your wife had a wonderful time. I'm glad the Humira is working for you. Wow only one poop a day wish that was me. Glad the ear is better. Have a great time on your next cruise.
All the best,
Lucy
 
first day of humira.

got my first injections today (all 4). i was pretty nervous about the pain factor.
when i finally injected the first one (all 4 in the legs) i jumped a little form the snapping sound. i found that it didnt hurt at all!!!!!
people kept scaring me online telling me they cried cuz it hurt so horribly. i think some people just overreacted. it felt like someone pinched my leg for like 3 seconds. ugh. wish i haden't worked myself up! after the first pen i just sped thru the other 3.

i hope this works! it would just be perfect.
 
Mike - Great news!! So happy the Humira is working for you. Enjoy your vacations! :)

Justin - Glad to hear the injections went well. I knew they would! :) You can't always listen to what people say. Some people are super sensitive to needles and make it sound way scarier than it is. but I'm glad you survived. Now you can share your experience with other newbies, so they won't be as scared! Hope you start feeling better soon. :)
 
It really depends on the location you inject. Sometimes mine don't hurt at all... sometimes they are MURDER. I think it has to do with fat/muscle/nerve ratio.
 
I had a loading dose of 2 injections (80mg's) yesterday. One in each thigh. It didn't hurt at all. The nurse told my to avoid where you can seen any veins as those areas are the most sensitive.
No ice packs were used. Just took the humira out the fridge 20 minutes before they injected me. Felt a sting for no more than a couple of seconds and it was all over.
The nurse also said the stomach shouldn't hurt either and suggested I try that for my next shot as it's best to rotate the location you use to get the best absorption.
 
I took my second loading dose. 2 shots on Monday in the stomach. Thanks to prednisone I have no problem pinching an inch on my stomach. No side effects except that I feel better physically than I have in almost two years. I'm still working on the emotional part. Being so sick and being in so much pain for so long has done a number on my emotional health. I'm grateful that the humira is doing it's job.

I hope everyone has a great holiday weekend.

Ann
 
Ann good luck on the Humira it's the best thing I've used to date. I still have some problems, but I have been on the Humira for a couple of years now. I was gonna say your up early but I see you live in CA so I guess you're up late.
 
Lol I have a dog who thinks she has to eat at the same time on the weekends as she does during the regular work week.
She's my alarm clock! I live south of Dallas.
 
marisa - thanks! i already talked to some newbies and told them.

hungry - same think with me but im not brave enough to even think about the stomach yet.
 
I have been on Humira since May 2008 and was one of the ones that had a total breakdown doing the first round of 4 shots...I believe it was more overload of the whole concept of Crohns and having to do this forever that upset me though as opposed to the pain. I keep a list of all the shot locations (upper right stomach, lower left stomach) so I make sure each spot gets its fair share and not to overdo one area too much. I have had fantastic results with Humira. However, I had surgery this past May which caused a flare up and an infection and an absess and fistula which led to another surgery and another flare up. So My gastro wants to switch me from Humira to Cimzia as he thinks the Humira is no longer working. So my question is - do yall think it's possible that the physical and emotional stress my body has been under all summer has just overwhelmed the Humira's ability to work? Is it possible that once we get the flare up under control and things calmed back down that it could still put me and keep me in remission? I'm nervous to switch so quickly - not to mention the gastro said that patients that switch to Cimzia only had a 40-60% chance of going into remission. I plan on discussing all this with my gastro but any advice is much appreciated!!
 
Beth - I currently take shots every two weeks but went up to weekly doses during a flare up in the past. Thanks for suggesting this - I have added it to my list of questions for the doctor!
 
Got my loading dose of Humira today. 4 40mg shots. 2 40 mg shots two weeks from now, than 1 40 mg shot everyother week. Remicade doesn't work for me anymore so I'm sort of hesitant on whether or not this will work for me. Hopefully it works out and it gives me some time.
 
Good luck Poppysocks, aillimack.

I've still got the remains of a cold, I'm supposed to do my injection but I'll delay it until tomorrow evening. Oh well. Feels like I'm hooked on the damn stuff! ;-)
 
Took my first regular 40 mg. Dose this last Monday. I had a problem with d between the last to so am on a quick prednisone taper. All in all even with the minor setback I feel better than I have in years.

Ann
 
I know it may take awhile but 5 days in from the loading dose, not really feeling anything different. Appetite still isn't that great. Currently trying to wean myself off prednisone, at 25 mg currently. Still really tired, BM's at probably a 4/10. I wish I didn't have this innate sense of impatience. I want to feel good NOW!
 
Well I got my script yesterday for Humira. I can pick it up from the pharmacy tomorrow. The doctor didn't do any tests (TB or chest x-ray--just from reading through this thread). Is that odd? He also said I can do it all at home by myself or go in the office and have a nurse show me how to do it...


Another thing... He said that Humira carries a long term risk of cancer. Did anyone else's GI tell them that???
 
Yup, that's odd. The reason for the tests are to check you don't carry some pretty nasty infections that can activate whilst your immune system is compromised, which have in the past lead to fatal consequences. I'd check with your IBD nurse or consultant before using!
 
NicoleKS said:
Well I got my script yesterday for Humira. I can pick it up from the pharmacy tomorrow. The doctor didn't do any tests (TB or chest x-ray--just from reading through this thread). Is that odd? He also said I can do it all at home by myself or go in the office and have a nurse show me how to do it...


Another thing... He said that Humira carries a long term risk of cancer. Did anyone else's GI tell them that???
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Nicole, :hang:

I have not started on Humira yet. I get to have surgery first. Yes this is ODD. The TB test is to verify you don't have latent TB that could be activated because of using Humira. I would not start the med until a TB test is done.

Also, are you using the Pen or a Syringe. If the Pen, then maybe you can start without training. If Syringe, you need to be trained. In fact, I would request training no matter which method you are using. Besides, it would seem to me that the loading doses would be the best opprotunity to train somebody. The nurse could show you the procedure with the first injection, and then you could do the next 3.

As far as the cancer risk, I remember reading something about the long term possibility of cancer with Humira is slightly higher than for the normal population. While that is not something to ignore, I am looking at it like this. I might get cancer, I definitely have Crohn's disease and am going to have a significant portion of my bowel removed because of it. Because of that, I will go with the Humira. My G.I., whom I have learned to trust, is recommending this as the therapy of choice for CD.
 
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allimack said:
I have been on Humira since May 2008 and was one of the ones that had a total breakdown doing the first round of 4 shots...I believe it was more overload of the whole concept of Crohns and having to do this forever that upset me though as opposed to the pain.
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I agree with you here. That first day with the loading doses was hell for me!! I was saying the same things about having to do it forever now and all of that. I had even had Crohn's for about 8 years before starting it, but it just seems I never get use to all the crap you have to go through while having the disease!!
 
This is directly off the Humira website -

Serious infections have happened in patients taking HUMIRA. These infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some patients have died from these infections. Your doctor should test you for TB before starting HUMIRA, and monitor you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB.
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Well I have the Humira now.... I had a negative TB test about two months ago when I started a new job. Opinions? Is that okay or should I have another one done?
 
Manzyb said:
I agree with you here. That first day with the loading doses was hell for me!! I was saying the same things about having to do it forever now and all of that. I had even had Crohn's for about 8 years before starting it, but it just seems I never get use to all the crap you have to go through while having the disease!!
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I agree I don't think that you ever get used to this disease, sometimes I feel like a complete wimp but it does get to you. I have been on Humira for 1 year and 9 months, I worry about being on the injection for too long. I currently have the injection every 2 weeks and possibly increasing to weekly.

How long has everyone else been on it? Can it be used long term?
 
Nicole - it is possible that the TB test you took 2 months ago could be valid. I was supposed to go into the doc's office to get the skin test for TB, but my GI's office realized when I had been hospitalized (pre-diagnosis) about a month and a half prior to starting Humira they had run a blood test checking for TB that qualified as a test. I would double check though, as I'm not sure how far back you are allowed to have a TB test and still count it. Regardless, you are supposed to get a chest x-ray as well. Definitely consult with your doc. Better safe than sorry!
 
Tinkerbell - my GI told me Humira would be my maintenance drug until they found a cure or a better drug. Whichever comes first! So, I would say, yes, it can be used long-term.
 
I have been on Humira for about 3 months now everyother week, but my Rhemy is moving me to everyweek for Ankylosing Spondylitis and uveitis/scleritis. My opthamologist didn't want to talk to my insurance apperitly. I still haven't gotten full aproval for every week, so I'm going to have to convice the pharmacy to send me extra's for the next 6 weeks. I hope this works.
I am weirdly pro humira because my brother worked at abbot labs and on the humira.
I don't find the pen that bad, but i get insanley nervous before hand. Some times i can't even find where I injected to put a bandaid on till the next day.
 
Random question...

I had some routine blood work done by my GP (thyroid, cholesterol, blood pressure, etc.) and all the results came back fine, except my cholesterol was a bit high. The nurse said for now they would monitor it, since "it's probably due to the Humira."

I hadn't heard of this before. Has anyone else heard of Humira causing elevated cholesterol levels?
 
Hi everyone,

I just wanted to check in with this thread to ask about some side effects I am having after starting humira. I've done my loading doses and now am every other Monday. I started on august 16th. So today is my second regular dose of 40 mg.

I have noticed that a few hours after the injection my eyes and skin itch a bit. I plan to take benedryl an hour before my injection this time.

I get a headache that is just a dull kind of there headache that lasts about a week.

I feel kind of more tired than usual.

My skin has become very dry.

On the upside all of my joint and muscle pain is gone and I generally feel pretty darned good compared to when I was on remicade.

Anyone else have any of these side effects or any other funky effect you want to share?

Ann
 
Hi Vintage Ann,

I have been on Humira for 1 year and 9 months. I am on 40mg every 2 weeks. I too get the headaches, very dullpain and doesn't always go away with pain killers. I also have very dry skin.

The injection has worked for me to date, however think I am in a flare at the moment amd it is a while since I have had such bad symtoms so it must have been working!

I have started to get a tightening pain in my chest not all the time is comes a goes maybe a couple of times a week.

Hope it works for you.
 
I get the headache a few minutes after the injection, but it doesn't last long. The main trouble I find, and it's not much of a trouble tbh, is that night I often have to get up for a wee in the night of the injection.

The upside is that I'm feeling better than I have done in years so much so I'm starting to job hunt.
 
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I had a noticeable headache the first time I did the injections, but not after that. Or maybe I just don't remember. Hopefully that means they may lessen over time.
 
VintageAnn said:
Hi everyone,

I just wanted to check in with this thread to ask about some side effects I am having after starting humira. I've done my loading doses and now am every other Monday. I started on august 16th. So today is my second regular dose of 40 mg.

I have noticed that a few hours after the injection my eyes and skin itch a bit. I plan to take benedryl an hour before my injection this time.

I get a headache that is just a dull kind of there headache that lasts about a week.

I feel kind of more tired than usual.

My skin has become very dry.

On the upside all of my joint and muscle pain is gone and I generally feel pretty darned good compared to when I was on remicade.

Anyone else have any of these side effects or any other funky effect you want to share?

Ann
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I started Humira last Wednesday and I had a horrible headache a day or two afterward. And I have felt absolutely exhausted since. Bleh.
 
Thanks for all the support. Took my shot today with 10 mg. of benedryl as a chaser. Slept all day. Now just having hot flashes that have nothing to do with crohn's I'm afraid. Some send me an arctic breeze please.

Ann
 
Just in case people who get headaches haven't twigged... do the injection just before bed then you sleep through it!
 
I had my first set of 4 injections yesterday with the epi pen and it hurt... but not as bad as I thought it would. The worst part is the clicking of the pen. Hate that. It did burn very bad though, I wish the nurse who helped me would of told me to bring the little ice pack to lay on there after I did them. I just hope they start to help with my body and symtoms.

Well see. :) Hope everyone is having a great day!
Elise
 
Well, yeah, they need to be stored in the fridge, but let them warm up to room temperature before injecting eases the sting. As does where you inject. Some people find tummy easier, others the legs. Anyway hope it works well for you.
 
Picked up my prescription today for my next Humira shot. It has been about 7 weeks since the loading doses due to unexpected surgery in between. My GI told me that they will monitor me for some months and then hopefully wean me off Humira completely. I am already tapering off of Medrol (steroids). This will leave me with absolutely no maintenance to depend on. What is my GI thinking?
 
beth said:
Well, yeah, they need to be stored in the fridge, but let them warm up to room temperature before injecting eases the sting. As does where you inject. Some people find tummy easier, others the legs. Anyway hope it works well for you.
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Thanks i will definitely think to go that route next time! :)
 
Elise - Definitely let the Humira warm up for 20-30 mins before injecting... I find it also helps to ice the injection site!

CyCrohn'sGuy - What?! Why would they want you to wean off of Humira with no other maintenance med? That seems odd... Is he planning to start you on something else, like Remicade?
 
MsSickandTired said:
CyCrohn'sGuy - What?! Why would they want you to wean off of Humira with no other maintenance med? That seems odd... Is he planning to start you on something else, like Remicade?
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I have no idea what he is planning. I was on Remicade for about a year but became immune to it which is why I was prescribed Humira. I need to ask some questions at my next apointment.

Costas
 
MsSickandTired said:
Elise - Definitely let the Humira warm up for 20-30 mins before injecting... I find it also helps to ice the injection site!

CyCrohn'sGuy - What?! Why would they want you to wean off of Humira with no other maintenance med? That seems odd... Is he planning to start you on something else, like Remicade?
Click to expand...

Thanks! I def am going to do that next time when i do the 2 injections. And i will also ice the site as well:D

Ty again!
 
Hi everyone, I just found this place, wish I had known about it years ago! I have a quick question. I started my loading dose of Humira yesterday (4 pens). Now I feel awful: headache, dry eyes, achy, a little nauseous. Is this normal? If it is, do you know how long it will last? Tylenol seems to be doing nothing to help. I wonder if I will feel the same when I have to do 2 injections in 2 weeks.

Blah. BTW - I've had UC/Crohn's (debatable diagnosis) for 8 years. I can no longer do Remi or steroids due to side effects.

Thanks for any input,
MH
 
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I'm a little concerned at the 'achy, a little nauseous' because it could be a symptom of you already having antibodies to Humira - because of previous Remicade. It may not be, you may just be getting a little reaction to the other things like the preservatives/etc. Or you may be starting a cold/virus. Whichever, you should keep an eye on yourself and if it continues to get worse call your consultant's office.

Welcome, BTW!
 
Thank you Beth. I still feel just totatlly 'off'. I can not be having a reaction. I just can't. This is my last option. It took me two weeks of fighting insurance for this. It HAS to work. :(

I will keep an eye on it and will make sure I have someone with me the next time I do the injections. I live with 3 viral plagues (my kids), so it could be a cold. Also, I'm trying to stop Vicodin (been taking for about a month). I wonder if that could be part of the problem.

Thank you so much for your reply. Nice to know I'm not totally alone in this.
 
Absolutely not alone! There are plenty of people now 'out there' using this stuff. Do you have an IBD nurse where you are? We have specialist nurses here we can contact between consultant visits, and in emergencies our normal GP's can access the IBD team very quickly. As if you are in any way concerned you should contact your consultants team, just in case you are in trouble.

If you have a thermometer you could take your temperature to confirm you aren't fighting a major infection/virus - I've injected when my temp has been slightly elevated and it didn't cause any problems - unlike remi you are responsible for making sure you are okay to do the injection!

Vicodin withdrawal might be causing funnies... IIRC, it wasn't much fun for House (on TV) when they took away his stash!

Anyways, contact your GI if you have any worries, we can only be a sounding board really.
 
Humira seems to be doing its job. I'm completely off pred now and I feel pretty decent at the moment. No pain, BM's seem a lot better, weight is coming on slowly. Energy level is still suspect (although I'm hoping that has to do with tapering off the pred just recently). My BM's aren't perfect but they are better than they have been in a while. Sometimes it looks better than others. I'd say it went from about a 3 to a 6.8. Because it's actually somewhat formed when I go, as opposed to it just being straight up liquid. I've only been on it for about 2 weeks and 3 days. I started noticing a difference at about a little over a week.
 
Sounds good! The goodness should continue to build. Whilst I felt so much better pretty quickly, real amounts of energy and brain 'brightness' have taken a while to come back.
 
Humira question

I am scheduled to start Humira soon but I have many concerns. Right now I really feel that the nurse (who works for Abbott apparently) seems really pushy to get me to start and going and this make me uncomfortable. Me and my fiance are trying to have a child and from all of the information i have found, Humira is not good for sperm count. Right now I feel great, I have only had bloating and the associated pain with it a limited amount of times with the last time being over a week ago. I do not want to take anything unless I have to. Has anyone out there heard of the sperm count issue or is currently having problems like that?
 
JohnathanO said:
I am scheduled to start Humira soon but I have many concerns. Right now I really feel that the nurse (who works for Abbott apparently) seems really pushy to get me to start and going and this make me uncomfortable. Me and my fiance are trying to have a child and from all of the information i have found, Humira is not good for sperm count. Right now I feel great, I have only had bloating and the associated pain with it a limited amount of times with the last time being over a week ago. I do not want to take anything unless I have to. Has anyone out there heard of the sperm count issue or is currently having problems like that?
Click to expand...
Where have you read that Humira alters sperm count?
 
New club member. Actually, my 9 year old son is the member- but I do the shots- so ;)..

He was nonresponsive to 5-asa's and steroid dependent since diagnosis in june of 2009.. Fought with the insurance company for 4 months to bypass Remicade to Humira. So far it is working like a charm. He's gained 40# and able to do normal kid activities again. Keep hoping that this continues.

Did anyone's eczema flare up on Humira? I see that it can be a side effect and searched the boards without success.
 
Zoodles, please come to Your Story and introduce yourself.. I have an 11 yr old crohns and would love to meet you!!
 
I just did my Humira injections (second time) and on one of my legs there was instantly a bruise and a hard bump at the injection site!! And it only happened on one of my legs... The other injection site looks fine.... Any ideas??! This didn't happen with the loading doses!
 
Possibly hit a small blood vessel... I only inject in my tummy as it doesn't hurt too much, and I'm too chicken to experiment!
 
beth said:
Possibly hit a small blood vessel... I only inject in my tummy as it doesn't hurt too much, and I'm too chicken to experiment!
Click to expand...

I'm too chicken to experiment and try it in my stomach! Lol. Do you use the pens or syringe? I use the pens....
 
Nicole - This started happening to me several months after I started Humira. I even went into my GI's office to have a nurse watch me to make sure I wasn't doing anything wrong. Her suggestion was just that I push the pen down a little harder because it sounded like the needle wasn't injecting deep enough.

Sure enough, once I started pressing down harder and counting a couple extra seconds longer than normal...I haven't had any problems since then. Every once in a while I'll get a small bruise, but it's like Beth said, a blood vessel probably got knicked.

Though, from what you are describing it sounds like you are having a superficial injection and just need to press down on the pen a little harder, count slowly to ten and make sure the yellow window has stopped moving completely before removing your pen.

Unless you are experiencing any itching along with it, which in that case you could be experiencing an allergic reaction and may want to discuss it with your doc about taking Benadryl before you inject. But try the other stuff I mentioned first and see if it makes any difference next time! :)
 
dreamintwilight said:
Nicole - This started happening to me several months after I started Humira. I even went into my GI's office to have a nurse watch me to make sure I wasn't doing anything wrong. Her suggestion was just that I push the pen down a little harder because it sounded like the needle wasn't injecting deep enough.

Sure enough, once I started pressing down harder and counting a couple extra seconds longer than normal...I haven't had any problems since then. Every once in a while I'll get a small bruise, but it's like Beth said, a blood vessel probably got knicked.

Though, from what you are describing it sounds like you are having a superficial injection and just need to press down on the pen a little harder, count slowly to ten and make sure the yellow window has stopped moving completely before removing your pen.

Unless you are experiencing any itching along with it, which in that case you could be experiencing an allergic reaction and may want to discuss it with your doc about taking Benadryl before you inject. But try the other stuff I mentioned first and see if it makes any difference next time! :)
Click to expand...

Ahhh, thank you! Do you pinch at all? I pinch my leg just a little bit and inject there.....
 
I do pinch, but I inject in my belly. I tried in both legs and stomach on my loading day and was surprised to find out that I preferred giving them in my stomach (I was pretty adamant before starting that I'd inject in my legs). I do have pretty veiny legs though, so it make sense that it hurts more for me there :)

I have heard from some who inject in the leg that they do not pinch and it has worked out for them. So, that could be something else to try. :) Let us know how it turns out!
 
Sorry i didn't get back to you sooner. I had questioned my GP and he said it will have a negative effect on sperm so when I was at my GI that was one question I asked him. He said it is actually one of the stipulations when going on Humira that you sign off saying you will not try to have children while on Humira or for 6 months after you go off the drug. When you have to sign off for a specific reason like that, there must be some kind of issue with it.
 
That is weird, Johnathan. I haven't heard of low sperm count or signing a waiver. Though it seems Canada is a lot more strict when it comes to many drugs.
 
JohnathanO said:
Sorry i didn't get back to you sooner. I had questioned my GP and he said it will have a negative effect on sperm so when I was at my GI that was one question I asked him. He said it is actually one of the stipulations when going on Humira that you sign off saying you will not try to have children while on Humira or for 6 months after you go off the drug. When you have to sign off for a specific reason like that, there must be some kind of issue with it.
Click to expand...

I was told I have to be on 2 forms of birth control while on 6MP but was never told anything about the Humira! I'd love to have a third child someday but I don't know how that's going to work out with all the meds I'm taking to try to get this disease under control. :/
 
dreamintwilight said:
I do pinch, but I inject in my belly. I tried in both legs and stomach on my loading day and was surprised to find out that I preferred giving them in my stomach (I was pretty adamant before starting that I'd inject in my legs). I do have pretty veiny legs though, so it make sense that it hurts more for me there :)

I have heard from some who inject in the leg that they do not pinch and it has worked out for them. So, that could be something else to try. :) Let us know how it turns out!
Click to expand...

You use the pen in the tummy? The needle stick doesn't bother me at all-- i's the burning sensation as the medicine goes in that makes me want to scream!! I'm scared to try it in my stomach. But I might suck it up and see if it hurts any less for me there.
 
Nicole - Yeah, I do the pen in the tummy. It's not so bad for me. I agree, the prick going in isn't as bad as the sting of the Humira going in. I have found if I let it sit out for 40 min. the sting is actually very minimal! My "favorite" spot to inject in the belly region is the "love handle" area. I basically don't feel a thing! I am very petite and my legs are on the lean side. If I gain weight it's usually in my tummy region, so it makes sense that it would be less painful for me in the stomach since I have more padding to work with ;) It could be worth a try if you are the same way! And hey...it's only 12 seconds of your life to try it out. IF you don't like it, you never have to do it again in the stomach, right?

Oh, and I just watched a webcast ("IBD & She: Focusing on Living While Managing IBD") today on CCFA.org's website on women and IBD. You should look it up. It had a lot of great info on pregnancy and IBD medications and other women's problems and how they are affected by IBD.

Here's the link actually, to make it easy :) Just make sure you have Real Player or Windows Media Player so you can hear the audio along with the slides.

http://programs.rmei.com/CCFA241VL/
 
I inject in the legs as well, I've only done the loading set so far though. I thought about the stomach but am a little nervous to try it there.. my legs are pretty fatty, so I pinch and pop the pen right in. I just hate the popping of the pen. Ugh. My next injections are next Wednesday, so well see how this thing goes doing it alone and not with help from the nurse.

:)
 
Momof2EW said:
I inject in the legs as well, I've only done the loading set so far though. I thought about the stomach but am a little nervous to try it there.. my legs are pretty fatty, so I pinch and pop the pen right in. I just hate the popping of the pen. Ugh. My next injections are next Wednesday, so well see how this thing goes doing it alone and not with help from the nurse.

:)
Click to expand...

I do mine on Wednesdays as well. Did mine yesterday though. =)
 
dreamintwilight said:
Nicole - Yeah, I do the pen in the tummy. It's not so bad for me. I agree, the prick going in isn't as bad as the sting of the Humira going in. I have found if I let it sit out for 40 min. the sting is actually very minimal! My "favorite" spot to inject in the belly region is the "love handle" area. I basically don't feel a thing! I am very petite and my legs are on the lean side. If I gain weight it's usually in my tummy region, so it makes sense that it would be less painful for me in the stomach since I have more padding to work with ;) It could be worth a try if you are the same way! And hey...it's only 12 seconds of your life to try it out. IF you don't like it, you never have to do it again in the stomach, right?

Oh, and I just watched a webcast ("IBD & She: Focusing on Living While Managing IBD") today on CCFA.org's website on women and IBD. You should look it up. It had a lot of great info on pregnancy and IBD medications and other women's problems and how they are affected by IBD.

Here's the link actually, to make it easy :) Just make sure you have Real Player or Windows Media Player so you can hear the audio along with the slides.

http://programs.rmei.com/CCFA241VL/
Click to expand...

Thank you for the reply and link!
 
Had my second Humira shot 2 days ago and have had a terrible headache since. I didn't have any symptoms following the loading doses but this headache is not shifting. My legs also feel very weak and I'm generally very tired.

Costas
 

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