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Crohn's Disease Forum

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Here is an open question for everybody on Humira and particularly those who have tried Remicade too. I will post the same on the Remicade pages. I will be offered a choice between these two drugs. It has been presented to me as a simple choice of delivery (infusion vs injection) and with no other differences.

OK, so these are different drugs and will have different success rates with different people. I am planning to go for Remicade first and later I can switch to Humira for self-administartion if I choose.

However, from the guys and girls out there with experience, which is the better bet to start with? Both are recommended to me for both the Crohn's classic stuff and the extraintestinal symptoms of related arthritis.

Please share your experience with me?

Thanks
 
Iv been on humira for a month now, and so far all good. Though my gi says it's 3 months until it takes full effect, and 4 more until 6mp does.
Have any of you had fissures and Fistulas heal from humira?
 
Hi all,
I am trying to find info on the cost of Humira in Australia. My daughter (age 13) has reacted to Remicade after 18 months, and needs to go on Humira but she does not meet the requirements for the government to pay for treatment. She is under 17 so they wont pay!! Her Paed GI is trying to work something out on compassionate grounds but if it doesn't come off I would like to be prepared for the shock of the cost!!!
Also, are there any lobby groups to 'persuade' the govt to expand the criteria for who gets drugs and who doesn't?
Thanks
 
I don't know if this will be of any help, but here, one month supply at the standard posology (2 pen - 1 every 2 weeks) is around 1400$. With the initial doses and all altogether the treatment for the first year is supposed to be around 19,000$... What I am hoping, is that often, through the company, they can manage obtaining the drug for almost free or at the very least a reasonable price.

I think I would give a shot at contacting the company:
http://www.abbott.com/global/url/content/en_US/10.40.20:20/general_content/Global_Location_Profile_0025.htm

I know my mother managed to get drugs for free by contacting certain companies back in the days as she was unable to pay for her prescription and it was causing an issue to raise us so she got medication for free for a few years.
 
Just started Humira this past week. I've never been on this type of medication for my Crohn's, I'm a bit nervous because of the amounts of side effects that can occur but I'm also pretty excited. I've been flaring on and off since 2010 and I'm hoping Humira will be the thing that pushes me back into remission.
 
I've been taking it since January, and I don't have any side effects from it. After reading all the side effects, it's easy to get scared of it - anybody with a grain of sense would. However, I had to weigh the risks of the disease against the risk of the side effects of the medication. I decided that the disease was worse.

Once I made the decision, I quit thinking about side effects - I think I'll know if something starts to go wrong.
 
gabby'smum said:
Hi all,
I am trying to find info on the cost of Humira in Australia. My daughter (age 13) has reacted to Remicade after 18 months, and needs to go on Humira but she does not meet the requirements for the government to pay for treatment. She is under 17 so they wont pay!! Her Paed GI is trying to work something out on compassionate grounds but if it doesn't come off I would like to be prepared for the shock of the cost!!!
Also, are there any lobby groups to 'persuade' the govt to expand the criteria for who gets drugs and who doesn't?
Thanks
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Hi, I've been on Humira for a couple of years now. Just wondering where you see your GI? When I was referred to my GI I saw him at his private rooms the first time. I needed a new script for Budesonide which we had to pay full cost for (and then get the medicare rebate later) due to seeing him at his rooms. He suggested we see him in a public hospital's outpatients dept he visited from then on as the scripts would be cheaper to fill (PBS price $5 or so).
Anyway, when he prescribed Humira for the first 6 months or so the hospital held onto my script and was filling prescriptions for the pen for me for free from their dispensary. Now I take the scripts to the chemist. The full cost on the label is $1774.36 (2 pens).
 
I started on Humira yesterday evening. I would guess my gastro doc gave me half dose to start with as it was just two 40ml pen doses to start and will then be one every two weeks with a review after week 6. Took them in the thigh no problems.

Yes, it could be the placebo effect or hysteria or whatever, but this morning was the first time for ages that I went back to sleep after first waking. Normally somebody hits my stomach with a baseball bat around 15 seconds after waking.

I'm already dumping some of the 9 other prescription medecines I was on, including dropping pred from 20ml to 10ml and will get right off that within a few days.

You've heard it all before - but this is going to work!
 
Hi Gabby's Mum
I'll check my box the next time I pick up my Prescription to let you know what the non PBS price is - to the cent!
I know it's around $1700 per double dose - so about $850 per fortnight - which is pretty prohibitive - especially compared to $35.40 on the PBS.
That's a real bugger they won't let her have it because of her age.
Hope you can find a way around it for her.
 
Hi Paul and the Humi Club I've been on Humira now for 2 years prior to that I was on Ramicade which made me nauseous for most of the time between infusions. I've found Humira is doing the job and with less side effects. But as you say everyone is different and will be affected in different ways. Humira is less hassle it takes seconds at home whereas Ramicade takes a while plus you have to go to hospital for infusion.
Hope in some way this helps.

Chris
 
Been on Humira for 10 months, zero problems, the odd (once or twice) skin infection which clears up with some OTC cream, bloods always come back normal, it's an awesome drug.

I'm just after leaving mine out to warm up, going to do my injection in about 45 mins, and I always look forward to it, maybe I'm a sado and love the pain! Bwahaha. =]
 
First off, sorry for the long post and thank you very much to anyone who can read through it all..

I think my GI doctor wants to switch me from humira to cimzia. I haven't tried taking anything alongside the humira, upping the doses or trying to boost it though.

I am worried because I've read through thie "Cimzia club" thread and it doesn't seem like there's a single person that this drug has really helped in the long term..

Now there's really no activity in that forum, so I'm wondering if this switch too soon might be a bad idea..

I've been on Humira every two weeks since July 2010. I never had any energy and I was normally cramping most of the time(except for some random good weeks/months here and there) until I seriously changed my diet starting around january. I'm still getting flares, some that last for a looong time and some that last 3-4 days but I have a ton more energy now and feel like I can actually keep up with "normal" people on my good days.

I do go through a lot of set backs with my diet as it's still hard for me to control my cravings for things I shouldn't eat. I still have a long way to go on fine tuning the diet and barely even know what any of my trigger foods are.

I've only heard from my GI doc right after a colonoscopy so I barely remember anything he said. I showed inflamation and he couldn't get through a part with the scope. I've had the CI scan where I was only able to drink 1/3 of the berium and that showed more "Chron's" activity. I'm going in in about 2 weeks for all the results and to start talk on what to do next with a medicine change and talk about possible surgery. I'm sure I'll have more info to bring to light then.

It really seems like whenever I have gas is my really bad days. I haven't been able to find anything to help this part yet. Once it's passed I barely feel any cramping at all.


Are there any last ditch efforts in an attempt to try and see if the humira is still helping?
 
So I'm joining the club this week. Luckily my insurance approved me and a shipment is coming tomorrow.

Am I going to be able to figure out how to administer this myself, or will I need a nurse or doctor? Seems like common sense and there are instructions online. Can I just do it myself?
 
Billk
It's easy to do and I think instructions come in the box. There probably is a video on line too. All I can tell you is it hurts for about 10 sec and don't flinch when you hear the click!:thumright:
 
Hey! Am new to humira club. Just got my first 2 shots today. In the belly, was quite painfull, but it goes away, so it's ok. :) Was also taking remicade, but it did absolutely nothing for me. It only got worse, but maybe they gave me placebo. Guess, i will never know. Am hoping that humira will work out for me!

When did you first notice changes? I'm taking it because of psoriasis and colitis. The doctor said that it takes effect in about 1 month to 2.
 
Joined the club a week ago. I administered the first 4 starting doses myself in my stomach with the pen. The first three didn't hurt at all but the last one I must of done slightly wrong and it stung a bit. Went very smooth and surprisingly easy.

I have had remicade before this but it stopped working so am now starting humira! Hope it works!
 
Ethan, just because the last dose hurt does not mean you did it wrong. I found that most of my doses hurt when I am more anxious about it an when you are doing four in row I can see how anxiety could build up. You'll be fine in the future.
 
I had my second Humira dose yesterday. Single 40ml. Since the first dose two weeks ago I have been in better shape and come of the Pred but nowhere near remission yet. If you use the pen properly it doesn't seem to hurt. I have really high hopes of this but can see that it will take longer to get proper remission.
 
Wow. 4 shots :O I never thought i would have to use a syringe by myself in my life, but oh well.life is funny :) Hope it will work out for you!! I also hope it will go well with me. Am really curious, when the first results will start to kick in.

And what about supplements? Do you take any of those? Since it's immunosupressive. Really wouldnt like to get sick now.
 
My daughter and I were both on Humira while she was hospitalized; she also attended school and daycare and neither of us were sick once while taking it. Although she is on supplements anyway just for Crohns (ferrous sulfate, d3, and a multivitamin)
 
Just got my loading shots today.
2 in the stomach and 1 in each leg.
The 1st one the doc did in the stomach (left side) burned, the next one I did in the right side of my stomach did not burn as much.
Funny the same thing happened when I did the next 2 in my legs, the left leg burned the right did not.
So from now on I will be doing it on my right side. :rof:

Hope it helps, getting tired of being on prednisone all the time.
 
Z_Ghost said:
Just got my loading shots today.
2 in the stomach and 1 in each leg.
The 1st one the doc did in the stomach (left side) burned, the next one I did in the right side of my stomach did not burn as much.
Funny the same thing happened when I did the next 2 in my legs, the left leg burned the right did not.
So from now on I will be doing it on my right side. :rof:

Hope it helps, getting tired of being on prednisone all the time.
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Thats wierd. My doc said I had to take them all in the same area. Like all 4 in stomach or all 4 in legs. I chose stomach for all 4
 
EthanPSU said:
Thats wierd. My doc said I had to take them all in the same area. Like all 4 in stomach or all 4 in legs. I chose stomach for all 4
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Probably just different ideas on how to use it, I would think.
I find it more strange that the left side hurt more than the right.
Then again with me that's about normal
In the last 8 years I have had 3 different docs tell me I am strange :luigi:
 
Had my first 4 today. I was so nervous when i looked into the pen and saw the needle (don't do that lol). Finally got up the nerve to do it. First one in left thigh. Not bad at all. I was expecting much worse.

Second one I did in the right thigh and it hurt much worse. I think maybe I just hit a bad spot. Still not terrible though.

Went back to the left for the 3rd and 4th ones and they weren't so bad either.

For anyone wondering, I would say the needle part doesn't hurt at all but the actual medicine stings a little bit when its going in. At least that was my experience. And I hate needles.

Heres to hoping that it works for me. I've been flaring real bad the last few days. After what we all go through with the stomach pains, these shots are cake!
 
Billk78 said:
For anyone wondering, I would say the needle part doesn't hurt at all but the actual medicine stings a little bit when its going in. At least that was my experience. And I hate needles.

Heres to hoping that it works for me. I've been flaring real bad the last few days. After what we all go through with the stomach pains, these shots are cake!
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I have been stuck by needles so many times over the last few years I have learned to block that pain out.:ybatty:
The Humira did burn a bit.

So far day 1 was better, day 2 even better still.
Have not felt this good in the last 7 months.

Hope it helps you 2.
 
Z_Ghost said:
I have been stuck by needles so many times over the last few years I have learned to block that pain out.:ybatty:
The Humira did burn a bit.

So far day 1 was better, day 2 even better still.
Have not felt this good in the last 7 months.

Hope it helps you 2.
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You felt a difference that soon? I wasnt expecting it to kick in for at least a month or so based on what I've heard. I am feeling better today though....maybe it is working? Or maybe just a coincidence...
 
Billk78 said:
You felt a difference that soon? I wasnt expecting it to kick in for at least a month or so based on what I've heard. I am feeling better today though....maybe it is working? Or maybe just a coincidence...
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I did not think it would work that soon but it seems to be.
I ate 4 times yesterday and did not have to run to the bathroom once after eating and no diarrhea the last 2 days.
My energy level is up 30% over the last few months and I am sleeping better.
And my side is not hurting, still some discomfort but not the pain that is always there.
 
Z_Ghost said:
I did not think it would work that soon but it seems to be.
I ate 4 times yesterday and did not have to run to the bathroom once after eating and no diarrhea the last 2 days.
My energy level is up 30% over the last few months and I am sleeping better.
And my side is not hurting, still some discomfort but not the pain that is always there.
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Glad you are doing so much better. I was flaring bad the last few days and today so far so good.....so maybe we are the lucky ones who get results right away? Not going to get my hopes up just yet though.
 
I'm 3 weeks into Humira (6 shots so far), no effect yet. It's good to see so many people posting here actually (thanks y'all!).

My GI explained Humira is a human protein whereas Remicade is a mouse derived protein, so there are less alergic reactions with Humira (who cares, right, as long as does something...)

Diet questions: I have no loss of appetite but if you read diet suggestions it ranges from "eat meat" to "do a liquid diet." I used to eat well, now i limit the veggies. Probiotics seemed to make me go to the bathroom even more.

Hope they find a cause/cure soon - feel better everyone.

----
OkMontreal, 36yrs old
- CD, lower intestine, since Oct. 2010
- Prednizone (for a few weeks, two times), Mezzavent (3 times a day), 6 Merc (stopped after a few months, no effect), Humira (..waiting...), Peppermint Oil (...what?)
 
Gawddd! Warning! Do not do a ab workout after taking Humira injection in the stomach! I just started my ab workout and just crippled over in pain at the injection site. Haha note to self.
 
Its been a week since my initial dose and I thought I felt better at first but not so much now. Oh well, I know it takes time.

Anyway, was wondering if anyone else has experienced leg muscles cramping up due to the injections? Last night I had some really bad leg cramps and they are continuing into today. Might just be from being dried out and dehydrated because I wasn't feeling well yesterday. But could it be a side effect?
 
Billk78 said:
Its been a week since my initial dose and I thought I felt better at first but not so much now. Oh well, I know it takes time.

Anyway, was wondering if anyone else has experienced leg muscles cramping up due to the injections? Last night I had some really bad leg cramps and they are continuing into today. Might just be from being dried out and dehydrated because I wasn't feeling well yesterday. But could it be a side effect?
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Eat some bananas, Potassium
 
Yeah, bananas are a daily staple. its the rest that i find trivial.

i eat fish and rice which goes over well. potatoes should be great but i'm not convinced they are good for me.

LOL - abs exercises...i believe the crohns works my abs about 5 times a day.

thx.
 
Ive been on Humira for 5 years now.. Was on the Patient assistance program ..... Well now that i have crappy insurance I dont qualify and i cant pay my 3000 deductable and 30% of the 2000 cost for the medicine .... im out and I dont know what to do I know there are so many people with extra Humira laying around ... While i am here suffering .. What do people do witht he extras they have?
 
My dr decided to add 50mg imuran(azathioprine on prescription bottle?) a day.

Is there anything I should look out for while taking this? Or is there anything I shouldn't be taking or eating/drinking while on this?

I am going to take the special enzyme blood test and the weekly blood test probably this week.

EDIT: how long until I might start seeing results?
 
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I am having to decide between two meds: either 6MP or Humira. I feel like Humira is the last resort but I need advise on which one is more preferred. I am only 18 and I just recently had surgery to remove some colon and small intestine in December. My Crohn's specialist says I have a 50% chance of a reoccurrence in the next 5 years. But if I take a medicine the percentage is greatly reduced. I am very confused on which medicine to choose.
 
Hi Glenn,
My doctor, who is excellent, put me on Humira recently when Prednisone and some others didnt work. I have not been on 6MP, but I believe that one is not recommended for anyone who wants to have children. Something about conception issues. Although I could be mixing it up with something else.
ANyway, bottom line is that Humira is supposed to have good results with less side effects. The biggest downside is you have to inject yourself. Im still new to it but Im hoping it helps me.
My best suggestion is to research both as much as possible and decide which fits your lifestyle and comfort zone most. Then if that one doesnt work move on to the other. With Humira I think you have to give it a month or two though. Good luck!
 
filimami01 said:
Ive been on Humira for 5 years now.. Was on the Patient assistance program ..... Well now that i have crappy insurance I dont qualify and i cant pay my 3000 deductable and 30% of the 2000 cost for the medicine .... im out and I dont know what to do I know there are so many people with extra Humira laying around ... While i am here suffering .. What do people do witht he extras they have?
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http://www.humira.com/global/financial-assistance.aspx

Have you tried to see if they can help you get it.
 
GlennF said:
I am having to decide between two meds: either 6MP or Humira. I feel like Humira is the last resort but I need advise on which one is more preferred. I am only 18 and I just recently had surgery to remove some colon and small intestine in December. My Crohn's specialist says I have a 50% chance of a reoccurrence in the next 5 years. But if I take a medicine the percentage is greatly reduced. I am very confused on which medicine to choose.
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I can not say how well 6mp would work, all I know is after just the load dose of Humira I felt 20 years younger.
 
Bilk- I think the drug you are talking about that you should not go on if you want to have kids is Methotrexate. That is what the doctor I saw yesterday at the Mayo Clinic said (he wants me on stronger meds and I want to have kids in the next year or two after I'm married- eloping to Tahiti in October!!!) I'm a female so I don't know if that effects what meds play what role conception wise but just thought I would throw this up there in case anyone else had similar concerns.

Glenn- I don't have any advice. All I can tell you is that I went to the Mayo Clinic in Rochester, MN yesterday and saw a specialist in the GI dept there. They are at the forefront of medicine, especially GI issues. The doctor I saw wants me to start Humira AND 6mp. He said everything shows that patients are most likely to induce and maintain remission when combining the medicines and that taking both does not increase the incidence of the side effects of either. I don't know. I am a little freaked out but it is the first doctor I felt I trusted in a long time, and I am going to do it.
 
Just did my second injection last wednesday and feeling ok but hard to tell if it's done anything yet. In general feel better during the day but going to the loo 3-4 times at night and breakfast time. Was only diagnosed in February and have been improving very slowly since started taking imuran in Early May. Hopefully Humira will speed up recovery. This may sound like a silly question but what is it like to be in remission? Are there no symptoms at all? I wouldn't say my symptoms are really bad at the moment but I'd like to think I could get back to feeling completely healthy. Did anyone else experience a 'transitional period' of a few months or more when starting various meds after diagnosis?
 
JamieG said:
Just did my second injection last wednesday and feeling ok but hard to tell if it's done anything yet. In general feel better during the day but going to the loo 3-4 times at night and breakfast time. Was only diagnosed in February and have been improving very slowly since started taking imuran in Early May. Hopefully Humira will speed up recovery. This may sound like a silly question but what is it like to be in remission? Are there no symptoms at all? I wouldn't say my symptoms are really bad at the moment but I'd like to think I could get back to feeling completely healthy. Did anyone else experience a 'transitional period' of a few months or more when starting various meds after diagnosis?
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Hi Jamie,
I am right around the same time along as you. Just did my second dose yesterday. I have been feeling on and off. But, like you, it';s at its worst in the evenings and mornings. Not sure why. My doctor told me it normally can take a month or two to start working, so be patient! As long as you arent seeing any negative side effects just wait it out. Hopefully we both start feeling better soon.
 
Hey everyone, been posting recently because I started Humira 3 weeks ago. Have a question for you all.

I just did my second dose (2 shots) a few days ago. Since then Ive been feeling much better in terms of having no abdominal pains, diarrhea, or urgency to go to the bathroom. However, I am noticing that I am still having frequent bowel movements (like 5 a day). They are regular though and no pain, D, or discomfort. Is this normal? Has anyone else experienced this as they transition on Humira? Thanks.
 
Billk78 said:
Hey everyone, been posting recently because I started Humira 3 weeks ago. Have a question for you all.

I just did my second dose (2 shots) a few days ago. Since then Ive been feeling much better in terms of having no abdominal pains, diarrhea, or urgency to go to the bathroom. However, I am noticing that I am still having frequent bowel movements (like 5 a day). They are regular though and no pain, D, or discomfort. Is this normal? Has anyone else experienced this as they transition on Humira? Thanks.
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Hey Billk. I haven't seen as clear as improvement as that yet. Diarrhoea seemed to be getting better a few days ago, but been worse last couple of nights probably cos I ate too much when I went out for a meal. In general have been feeling fine during the day though and having periods of up to 12 hours where I'm not opening bowels. Gets worse at night and morning though. I'm taking imuran also at the moment though and I expect that's doing more work as I've been taking it for a couple of months. That's definitely positive if you're already noticing some improvement in symptoms after 2nd injection. Sorry I couldn't directly answer your question, but sounds like we are in a similar situation. We just gotta keep patient and not get too down if you have a bad day out of nowhere. It's really encouraging to know that people on this forum have benefited from Humira and I really hope it works out for the both of us.
 
Billk78 said:
Hey everyone, been posting recently because I started Humira 3 weeks ago. Have a question for you all.

I just did my second dose (2 shots) a few days ago. Since then Ive been feeling much better in terms of having no abdominal pains, diarrhea, or urgency to go to the bathroom. However, I am noticing that I am still having frequent bowel movements (like 5 a day). They are regular though and no pain, D, or discomfort. Is this normal? Has anyone else experienced this as they transition on Humira? Thanks.
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On day 21 now.
Depending on what I eat I can go 1 time to 4 times.
I ate 5 Cherry's last night and had to go 10 minutes later, then went 3 times in the next 30 minutes.
So no more Cherry's for me.
I ate at On the Border tonight (friends Birthday) and had the chicken and so far so good.
 
Hello I started my loading dose on friday! I am also on Imuran and prednisone for my crohns. Hoping that soon I will be able to taper off the pred, but not in a hurry.
 
:sign0144:

Hello fellow Humira users!

I was diagonosed with CD in June of this year and it has been quite a roller coster of a year. Any way.. I just started Humira yesterday and I can already tell a difference, but it was soooo hard to get out of bed the next day. My question is.. does anyone gain weight after strating Humira? If so, how much? Since January (when all of this began) I have lost 30-35 pounds and I would like to put a little weight back on, but not back to where I was before getting sick.

Thanks y'all and I will be posting my story in the other forum soon.
 
HTML:
Been on Humira for over a year now.Lately I have been having D but no other symptoms typical of flare. Got my bloods back. White blood cell count is normal and sed rate is 2. When I started Humira over a year ago my sed rate was 86. Each time it has been checked, since I've been on Humira, sed rate has gone down Under 15 is the target. 2 is very nice!
 
Took a loading dose of 160 mg 3 weeks ago and 80 last week. Going down to one injection (40mg), every fortnight from Wednesday. So far I have noticed very little if any difference. Does this mean that I am still unlikely to have noticed any improvement after the next injection as well? Seeing as the dose is less than my previous two injections? I know that it can take up to two months to work, but from what I've read on here, some people notice an immediate difference. I suppose it varies but do you cope on 40mg per fortnight or have you had to increase the dose and/or frequency of injections?
 
I'm doing my loading dose tomorrow morning and then taking a nine hour drive to accompany my wife on a business trip of hers. Can anyone explain a little bit about what to expect (if anything) side-effects wise in the first week.

Thanks all, this is my first post here and I hope to become a regular.

Do Good.
 
For me it took 6 months untill i could feel the effect. I have been using Humira since 2007 and it has worked perfectly :( So be patient :)
 
As far as immediate side effects, mine included an injection site reaction. I wouldn't expect you should have any other troubles, some people mention feeling 'run down' or like they might be coming down with a cold. Hope you stay well!
 
MikeD said:
I'm doing my loading dose tomorrow morning and then taking a nine hour drive to accompany my wife on a business trip of hers. Can anyone explain a little bit about what to expect (if anything) side-effects wise in the first week.

Thanks all, this is my first post here and I hope to become a regular.

Do Good.
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I did not have any other then being hyper for the first 4 days.
 
I've been on the every-other-week dose of Humira for a year now. A month ago, the doctor told me to start taking Humira weekly until I can get out of this flare (I'm also on Entocort). I had 2 pens and used them as directed; called about my other pens - the new dosage was denied by insurance and I cannot even get them to refill my old dosage. I can't even begin to describe the depression and anxiety I am feeling. I travel to see my GI doctor tomorrow. I pray she has ideas for an alternative treatment that will be acceptable to my insurance company. :(
 
botrel4: have you looked into or heard of the Humira Patient Assistance Program? My insurance would not cover Humira and I applied to the program and got A LOT of financial assistance. It is really awesome. Good luck and let me know :)
 
just had my loading doses the other day. seems to be having some affect already. tried one shot in my stomach, hurt like mad, so its the legs only from now on (which didnt hurt too much) :D
 
I've joined the club as well! :D

Finished my first 4 doses (stomach only from now on as the leg hurt like crazy fire mad) now waiting for day 15. Getting taken off of 6MP today which I'm glad to be off it. :)
 
I will be starting Humira today...and, im starting to get cold feet lol. I think too much and worry ect.

Egg me on people! Get me to do this! XD
 
Mike its not that bad. And in the long run it should help you.

Yesterday marked my 1 month anniversary on it lol. For some reason some shots hurt a little more than others (I think it depands what part of the muscle you hit). For me my left thigh works best. For your loading doses I suggest 2 in each thigh. The medicine will burn a bit going in but the needle doesnt hurt and honestly its really not that bad.....and Ive hated needles my whole life.

So anyway, after a month ive noticed a difference. I still have a bad day here and there but most days are good. I do tend to get tired the day or two after my injections...not sure if thats a normal thing. other than that no side effects at all. Please keep us updated!
 
I am finally going to my gastro on Tuesday to talk about starting Humira. I have had a terrible summer and I just can't live like this anymore. This is my first post. I am a mom of 2 and have had CD since 1996. I just can't hold it together anymore and my family is suffering because of it. I hate taking medicine. But now I am not only hurting myself, my kids are suffering because I am too sick to do things with them. Sorry to vent. I guess I am still trying to convince myself tat the medicine is not worse than the disease.
 
Mike88 said:
I will be starting Humira today...and, im starting to get cold feet lol. I think too much and worry ect.

Egg me on people! Get me to do this! XD
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You got this! I was freaking out a bit too. My 4 doses were split into 2 days so on the first day I tried one in the stomach and one in the thigh. Find which hurts less for you. Keep them out of the fridge for a while (at least 20 min I'm using the pens btw).

Its the medication itself that hurts, not the needle. It goes away pretty fast. Just count to 10 and you're done. Keep that needle in there, don't throw it across the room. :p
 
I did it!!! Thank you for all the support everyone :) you are the best. Really happy I found this forum and all you wonderful people in it.
 
I actually think the leg was more painful! which is weird, because i think technically the stomach has more nerve endings in it. Ill probably alternate either way, the difference was not TOO extreme. It burned after pulling the needle out longer than I was expecting lol.
 
Way to go Mike!!
I just gave myself my second dose yesterday and I was a bit nervous. I had picked up some tips from the forum that really seemed to help though: taking the medicine out of the fridge for 20-40 minutes before injecting and icing the area before the shot. It definitely hurt less than it did the first time!!
 
Hi Everyone, sorry I'm new here but definitely not new to crohn's; had it for over 22 years. Had two resections and going for a stricturplasty at the end of september. I have a question about Humira. Im sure you have all read the info pack that comes with humira and may have been, like my self, taken back by the huge number of side effects this drug can potentially cause. Ive been on humira for over 2 years now and it has seen me relatively chrohns free for most of that time. Unfortunately it can increase stricture frequency which is why I am going for my thrid operation. I have also noticed that over the last year my legs ache quite a lot; to the point where I am taking cocodamol to get sleep at night. It is getting much worse lately. I wondered if anyone else has had aching joints or muscles that they feel is attributed to humira use? Thank you
 
Locard56a said:
Hi Everyone, sorry I'm new here but definitely not new to crohn's; had it for over 22 years. Had two resections and going for a stricturplasty at the end of september. I have a question about Humira. Im sure you have all read the info pack that comes with humira and may have been, like my self, taken back by the huge number of side effects this drug can potentially cause. Ive been on humira for over 2 years now and it has seen me relatively chrohns free for most of that time. Unfortunately it can increase stricture frequency which is why I am going for my thrid operation. I have also noticed that over the last year my legs ache quite a lot; to the point where I am taking cocodamol to get sleep at night. It is getting much worse lately. I wondered if anyone else has had aching joints or muscles that they feel is attributed to humira use? Thank you
Click to expand...

I have heard of this happening but for me I get very tired for 2-3 days after my injections. Sorry to hear youre facing the side effect.
 
Mike88 said:
I did it!!! Thank you for all the support everyone :) you are the best. Really happy I found this forum and all you wonderful people in it.
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Awesome dude!!! Told you it wasnt so bad. Now lets hope it works quickly for you. I noticed a slight differenc in 2-3 weeks and now a month in its even better. Still a few symptoms but def working.
 
Locard56a said:
I have also noticed that over the last year my legs ache quite a lot; to the point where I am taking cocodamol to get sleep at night. It is getting much worse lately. I wondered if anyone else has had aching joints or muscles that they feel is attributed to humira use? Thank you
Click to expand...

I was diagnosed with crohn's in June and just started taking humira, this week was my second dose, and my legs ache a lot. I'm not sure if it is the humira or the other drugs (prednisone, imuran) but I feel you pain, no pun intended. And yes, the long list of side effects scare me too but I realize a lot of them are minimal and we are exposed to so many harmful elements just by being out in the world. I have been so ill that I am willing to try just about anything so I won't ever feel this bad again...
 
Amanda D said:
I was diagnosed with crohn's in June and just started taking humira, this week was my second dose, and my legs ache a lot. I'm not sure if it is the humira or the other drugs (prednisone, imuran) but I feel you pain, no pun intended. And yes, the long list of side effects scare me too but I realize a lot of them are minimal and we are exposed to so many harmful elements just by being out in the world. I have been so ill that I am willing to try just about anything so I won't ever feel this bad again...
Click to expand...

Did you inject in your thighs or stomach?
 
Billk78 said:
Did you inject in your thighs or stomach?
Click to expand...

My first time, the four shots, were in my stomach and left little bruises. The two shots this week were in each of my legs. I preferred those spots but not sure if it was because the medicine wasn't ice cold and I numbed the areas. What have you found that works?
 
I've been using the pens for about a year and just did an injection and I think I pulled it out early. Right after I took it off I saw clear liquid- clearly the medication. I only do them in my thigh and won't consider trying it in the stomach.

I took it a little over 20 minutes ago and it feels like it's burning.

Should I be worried? I will be trying to contact my dr and pharmacy tomorrow.

I have a needle phobia so i actually need someone to force my finger down on the button. Should I try switching to syringes and having a dr. give me the injections?

Sometimes the injection is a painful and sometimes I barely feel it. but lately my anxiety for these has been really bad and 3 out of the past 4 have been 'bad' ones. But I don't think I've noticed this burning before
 
How much medication did you see? I know the pamphlet I was given says you may see a few drops come out of the needle and that its normal. Saw a few on my leg the first time I did it there (the only time I'll do it there ever again) cause I put it straight down on my leg without looking so I only saw like a drop or two at most sitting on top of the skin. I count to 10 after I press the button.

Who's forcing you to press the button? Could they possibly do it for you instead? Sure you can have a nurse inject it for you in office (I was told I have that option).

You could try switching to the syringe but that burning will most likely be there. The medication itself burns even if its been out of the fridge for a half hour. How long do you wait to take it after taking it out of the fridge? I wait at least 20 min but have gone a half hour.

When I did my thigh the pain was a 9 for sure on the pain scale. It may depend on which spot you choose exactly so who knows, maybe you hit a nerve in that spot. Mine burned for a while then went away and came back later and went away again.

Let us know what the doctor or pharmacist says.
 
Has anyone ever tried to use a numbing gel or cream on the skin before you inject? I tried some orajel on my skin before I injected this last time and it really made a differnce in the pain level. I was just wondering if anyone esle has tried this.
 
Hey Everyone! I've taken six injections-1 per week, and the last two shots have hurt like the devil. On top of that I get a 3 inch in diameter welt that itches and rash on legs. I took Benedryl and Tylenol, but the welt doesn't come up til day 2 after the shot.

Any ideas on how to prevent this? I can't really stay on Benadryl constantly since it knocks me out cold.

Thanks :)
 
Mountaingem have you told you doctor and asked your pharmacist about the welt and rash? Sounds like an allergic reaction for sure but I dunno if it will get better or worse over time.
 
I've been on Humira for a little over 3 months I think. I have the pen now, I started with syringe and I can inject with needles. But the pen is easiest for me. I get joint pain in my lower back and hips. At night time I also lock up and cant turn over, I try and the pain wakes me about and then I need to lever myself up and unlock my back. My bed is new and is a quality bed, so I think its more me than the bed. I get tired, so very very tired. I am happy the crohns is in remission and that is great. I am still coming off the prednisone and I am also on 100mg Azathioprine. I have afternoon naps and I am in bed at 8:30 - 9pm. This week after my jab I lost a lot of hair, had - but I have heaps anyway, also got abdo pain and nausea till midnight. I put on my QV moisturiser for sensitive skin and my face came out in red welts and rash. I washed it off and it settled down. I am sure this is more to do with the Humira than anything else. On a good day I have about 4 hours of energy. But it all beats have active crohns.
 
Crabby said:
How much medication did you see? I know the pamphlet I was given says you may see a few drops come out of the needle and that its normal. Saw a few on my leg the first time I did it there (the only time I'll do it there ever again) cause I put it straight down on my leg without looking so I only saw like a drop or two at most sitting on top of the skin. I count to 10 after I press the button.

Who's forcing you to press the button? Could they possibly do it for you instead? Sure you can have a nurse inject it for you in office (I was told I have that option).

You could try switching to the syringe but that burning will most likely be there. The medication itself burns even if its been out of the fridge for a half hour. How long do you wait to take it after taking it out of the fridge? I wait at least 20 min but have gone a half hour.

When I did my thigh the pain was a 9 for sure on the pain scale. It may depend on which spot you choose exactly so who knows, maybe you hit a nerve in that spot. Mine burned for a while then went away and came back later and went away again.

Let us know what the doctor or pharmacist says.
Click to expand...

Thank you Crabby,

I can't remember exactly because around the times of my injection my anxiety is bad so everything I remember is a blur. But I know it was more than a couple drops, more like a big drop! and also, after holding light pressure with a tissue the blood looked 'watered down'

usually my dad or mom push down on my finger to press the button. I don't think I would be able to keep my leg relaxed if I had someone else do the pen to me, I can rarely get it relaxed when I do it myself.


I'll usually leave it out about 25-40 minutes, I've done some testing and it seems there's the same probability of it being painful from 20 minutes to 60 minutes of it being out. I've never tried icing or numbing gels.

I will make a post as soon as I talk to them, might be a couple days though.
 
Icing helps a little for me. I still feel the burn but probably not as bad. It definitely helps with the little needle prick though.

My guess is that maybe the needles themselves are too much for you and maybe having a nurse do it in office might be better. Its possible that due to the anxiety you may have let the needle come out for a second and then pushed it back in or it may not have been deep enough. You really need to hold it firmly at all times in that spot (again I do it for the full 10 seconds even though I see the yellow tab in the window) and if you get startled by the click you may have let off some pressure.

You should be able to talk to a pharmacist now.
 
Aura said:
I've been on Humira for a little over 3 months I think. I have the pen now, I started with syringe and I can inject with needles. But the pen is easiest for me. I get joint pain in my lower back and hips. At night time I also lock up and cant turn over, I try and the pain wakes me about and then I need to lever myself up and unlock my back. My bed is new and is a quality bed, so I think its more me than the bed. I get tired, so very very tired. I am happy the crohns is in remission and that is great. I am still coming off the prednisone and I am also on 100mg Azathioprine. I have afternoon naps and I am in bed at 8:30 - 9pm. This week after my jab I lost a lot of hair, had - but I have heaps anyway, also got abdo pain and nausea till midnight. I put on my QV moisturiser for sensitive skin and my face came out in red welts and rash. I washed it off and it settled down. I am sure this is more to do with the Humira than anything else. On a good day I have about 4 hours of energy. But it all beats have active crohns.
Click to expand...

You get blood work done right with the Aza? How often? I get mine once a month (mainly because I was on 6MP). I was recently taken off 6MP since my blood work wasn't looking good (higher liver count and not in therapeutic levels) so now I'm just on the Humira and both my GI and Rheumy are happy with that. Are they able to check with blood work if the Aza is within therapeutic levels for you?
 
Crabby said:
Icing helps a little for me. I still feel the burn but probably not as bad. It definitely helps with the little needle prick though.

My guess is that maybe the needles themselves are too much for you and maybe having a nurse do it in office might be better. Its possible that due to the anxiety you may have let the needle come out for a second and then pushed it back in or it may not have been deep enough. You really need to hold it firmly at all times in that spot (again I do it for the full 10 seconds even though I see the yellow tab in the window) and if you get startled by the click you may have let off some pressure.

You should be able to talk to a pharmacist now.
Click to expand...

I was thinking the needle may have come out and gone back in but then I noticed that white part locks? Or does it only lock after a certain point of extension?

I normaly will count to ten when the yellow tab stops also.

Maybe it isn't deep enough sometimes, I don't grab the area around it because I thought you only needed to do that when injecting into the stomach. Both hands are on the pen. I don't think that would go over well with me either. Feeling the medication actually going in!

Ah, just thinking about all this is making me feel the anxiety! I thought the weekly blood draws and b12 injections would help me out with anything that has to do with needles!
 
Just did my 2nd maintenence dose. I always do my in the stomac while grabbing the skin with one hand and pen in the other. I did it while it was still cold. I honestly think my pain theshold is very high since I really don't even notice the pain anymore
 
Zac with no K said:
I was thinking the needle may have come out and gone back in but then I noticed that white part locks? Or does it only lock after a certain point of extension?

I normaly will count to ten when the yellow tab stops also.

Maybe it isn't deep enough sometimes, I don't grab the area around it because I thought you only needed to do that when injecting into the stomach. Both hands are on the pen. I don't think that would go over well with me either. Feeling the medication actually going in!

Ah, just thinking about all this is making me feel the anxiety! I thought the weekly blood draws and b12 injections would help me out with anything that has to do with needles!
Click to expand...

I'm not sure about the lock but I know that wont matter if you pull away.

When I did my leg I also pinched the surrounding area. I never feel the medication going in even when I inject in my stomach. :p

I starting counting to 10 once I hit the button. In the pamphlet it says that when you see the yellow tab the injection is done but I see the yellow tab within like 3 seconds. :p I keep holding down longer just in case.

Some day you may want to try the stomach. For some people it hurts more in the leg and others more in the stomach. The leg hurt me a lot more. Perhaps your anxiety might go down a little if it hurt less. The leg made more sense to me since I don't want any needles near my stomach but that pain in the leg was no fun so stomach it is! ;)
 
Just a thought, but if you have anxiety with the needle stuff (I do too, TERRIBLY) maybe you could talk to your doctor about a short term anti-anxiety medicine for the days you inject? Something like xanax, it's not too long lasting and may be enough to help you get through the injections on your own rather than racking up more medical bills by going in and having someone else administer them. I have pretty serious issues and I take a xanax before any kind of blood work etc. unless I am told not to because it will interfere with results. I hope it gets easier for you. Try to remember, you have done it before, so you know you can do it.
 
Thanks again Crabby! Maybe I will get the nerve to try the stomach- hopefully sooner than later!

-And still planning on calling the pharmacy and contacting my main dr, trying to decide on switching to syringes first so I don't have to make more stressful calls than I need ..

ThatsWhatSheSaid, thank you, that's a great idea! My blood specialist nurses made sure I got some kind of anxiety med after having a ton of trouble getting an IV in me for an Iron infusion.
It has been hard to tell for me if the specific brand I've been using is really helping though. I don't remember anything from the infusion days because of some other med they give me after the iv is in but my mom tells me that I'm constantly telling her I don't think they're helping- like my mind is still freaking but my body might be a little more relaxed?
I also have been getting weekly bloodwork and monthly B12 injections. Shots don't get me worked up much and I have been doing a good job at not letting myself think so much about the blood draws until they start checking my arm.

I wish I would of tried this a long time ago!
 
Just joined today because I'm starting my first doses of Humira in the morning. I'm a little nervous. I wouldn't say that I have a fear of needles, but I've never had to give myself medicine before that wasn't in a pill form. I love how supportive everyone is on this site! I think I'll try the legs and then go from there.
 
davidfindley said:
Just joined today because I'm starting my first doses of Humira in the morning. I'm a little nervous. I wouldn't say that I have a fear of needles, but I've never had to give myself medicine before that wasn't in a pill form. I love how supportive everyone is on this site! I think I'll try the legs and then go from there.
Click to expand...

Yea Davidfindley! If you haven't read on here or heard from your nurse, there are some ways to ease the pain of the shots. I found that my second doses (that's as far as I've gotten in the treatment so far) went much smoother and less painful with a couple of tips. Taking the pens out of the fridge 20-30 minutes before injecting and icing the area you will inject. Both of those made the shots feel much better (you know what I mean:) Good luck and let us know!
 
Hey David-just wanted to send you some support on your first dose this morning! :emot-waycool:

Let me just share a few tips I've learned:

Take the pen out of the fridge about 15 minutes prior to injecting-it hurts less.

Take a Tylenol afterwards for swelling.

Icing the area for 15 minutes prior helps with pain as well.

I need to set a timer so I will hold the pen down long enough for the meds to fully release-10 seconds.

Best wishes and here's to better health for you!
 
Amanda D said:
My first time, the four shots, were in my stomach and left little bruises. The two shots this week were in each of my legs. I preferred those spots but not sure if it was because the medicine wasn't ice cold and I numbed the areas. What have you found that works?
Click to expand...

I dont like it in my stomach at all. It might be more of a mental thing because of the stomach pains I get with crohns. Plus Im fairly athletic so my thighs have some meat/muscle on them.

To be honest each injection is different for me. Sometimes it hurts way more than others. Other times I wonder if it even worked cause I barely felt anything. Could have something to do with the spot on my leg Im hitting. I recommend the upper thighs. Oh and for some reason my right thigh hurts more than my left lol.


Best advise, just keep trying different spots and see what you get most comfortable with.
 
davidfindley said:
Just joined today because I'm starting my first doses of Humira in the morning. I'm a little nervous. I wouldn't say that I have a fear of needles, but I've never had to give myself medicine before that wasn't in a pill form. I love how supportive everyone is on this site! I think I'll try the legs and then go from there.
Click to expand...

This sounds very similar to how I felt when I started. I almost made my wife do it for me because I just didnt like the idea of sticking myself....but you get used to it very quickly. I did 2 in each thigh for my loading dose and have stuck with the thighs ever since. The needle doesnt really hurt, its more of a burning sensation from the medicine. And like ive said before, sometimes it hurts more than others...no idea why.

Please check back and keep us updated.
 
Just did my shot; I love how one of my cats always manages to step right on the spot when he walks over me to cuddle up afterwards :p
I'm hoping it helps me get a decent night's sleep, been having insomnia from pred the last few weeks but humira always makes me sleepy!

:)
 
Im actually looking forward to my next dose on Thursday. I have been flaring since my last one. I think it's because they delivered it warm and maybe it didnt work. Going to switch pharmacies for sure.
 
lost kitten said:
Just did my shot; I love how one of my cats always manages to step right on the spot when he walks over me to cuddle up afterwards :p
I'm hoping it helps me get a decent night's sleep, been having insomnia from pred the last few weeks but humira always makes me sleepy!

:)
Click to expand...

My cat does the same thing! Or manages to get in the middle of everything-I usually have to put her out of the room and close the door when I inject. My husband gives me the MTX shot, and she hates him for an hour afterward, hissing and everything-gotta love the kitteh's...:ylol2:
 
I'm going to attempt switching to syringes to have a nurse give me the injection. The pens are supposed to ship on friday so I think I'll need to try to get my prescription changed to switch in time.

Would the nurse treat this as justa normal shot or is there anything I should tell them to do while injecting or preparing?
 
Billk78 said:
Im actually looking forward to my next dose on Thursday. I have been flaring since my last one. I think it's because they delivered it warm and maybe it didnt work. Going to switch pharmacies for sure.
Click to expand...

You really ought to contact the manufacturer on this, maybe they will replace the warm pens at no cost. Or at least stop doing business with that pharmacy...that's terrible you're suffering is most likely from their error!:ymad:
 

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