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Ania there are some parents here that have children your son''s age on humira. Some of them choose to take the humira by syringe instead of auto-injector. They also have the GI px a serum of lidocaine to give with the humira. My son hasn't used this method but Mr chicken has a son, age 11, that does use the syringe and lidocaine. Since I tagged her she should see and can give you a more in depth explanation as to their procedure.
 
Thank you for your responses.

Mr chicken, I can't wait for the advices.

My son has sacroilitis not Crohn`s, but I hope I can stay here anyway.
 
Ania said:
Thank you for your responses.

Mr chicken, I can't wait for the advices.

My son has sacroilitis not Crohn`s, but I hope I can stay here anyway.
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Your staying on this forum is not a problem with me! Inflammed joints in the lower back and spine does not sound like a lot of fun. Poor kid.
 
Ds has crohns and juvenile spondyloarthritis so inflamed joints including the back
He is on humira and Mtx for crohns /JSpA
Humira is given by syringe
The Rheumo prescribed lidocaine to add to the humira syringe
I draw the lidocaine in a clean syringe from the vial and open the humira syringe at the stopper where I add the clean syringe of lidocaine to the humira syringe

Things to help with pain
Pull the box from the fridge 1/2 hour before
Emla cream for the skin Prick pain if needed or
Freezy spray
Ds doesn't use it only the pain of the med burns
We use new movies, squeezy balls
Let him ask questions and know exactly what I am doing step by step
( fwiw Ds now draws his own lidocaine ;) )
Give him choices on location to get the shot
Time of day
What is on tv or music
What goodie to eat afterwards
Have him tell you how long it hurts 10 seconds etc
Have him look at you in the eyes during the shots
Ask open ended questions that he has to think about or describe things in detail
Let him push the syringe plunger in if he wants
Or put his thumb over your hand so he can control the plunger if he wants
Practice loosey goosey -relaxed muscles hurt less
Less pain if he is not screaming
Practice stop n go
If he says stop you don't push the plunger anymore
When he says go you push slowly
Teach him basics of meditation
Focusing on a happy thought - a pet , vacation etc...
 
Mr Chicken- thank you soooooo much!

How long does the pain/burn lasts? Is/was your son crying a lot? is he afraid when the shot time comes? I read that even adults get an anxiety..
How does your son handles that psychologically?

Have you noticed any side effects? I am traumatized by the side effects. I am afraid, that from happy, joyful, active boy, he will change into nervous, depressed child ...

I am sorry I am asking so many questions, but I have nobody to talk to..It is so strange and new, scary and terrifying .

In addition to this, English is not my first language, so all of that medical terminology is hard to understand :(
 
We had the family see a child psychologist to make sure he didn't have issues
The child psychologist came up with the techniques above to give Ds control
He used to scream and cry over the shots
But once we gave him more control and he realized the burning pain was 10 seconds
No issues
He now talks while he gets the shots and I get an "ow that hurt " and nothing more
He is fine no side effects and no issues
 
For what it's worth, as I know perspectives change from childhood into adulthood, I was deathly afraid of needles as a kid, and the idea of ever having to give myself an injection (such as when I learned what diabetes was) seemed a frightening impossibility. I won't say that giving myself the Humira shots are nothing...but I realized a month or two in that I was doing something I once thought would be impossible for me. So it may not be easy, but it will work out.
 
Mr chicken said:
We had the family see a child psychologist to make sure he didn't have issues
The child psychologist came up with the techniques above to give Ds control
He used to scream and cry over the shots
But once we gave him more control and he realized the burning pain was 10 seconds
No issues
He now talks while he gets the shots and I get an "ow that hurt " and nothing more
He is fine no side effects and no issues
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Mr chicken- I read that to my son. I told him about yours. It is important that he knows he is not the only one who goes through it.
Thank you.

We will start Humira the first week of August.
 
It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.
 
Caitlin84 said:
It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.
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Once you get the first one down, its all down hill from there. Just never get use to the burn though.
 
We were diagnosed a week ago. I as a mom, start to understand that this is maybe the best way to treat this disease.

I don't even freak out about the possible side effects anymore. the injections and fear that that our life will go from injection to injection, with trauma and a lot of crying. I might be wrong.

Mr chicken- is your son getting more infections while on Humira?Does he misses a lot of school days?
 
He doesn't miss a lot of school
He has been on biologics for three plus years including remicade ( had an allergic reaction to it after 8 months). Ds is very atopic so he is allergic to lots of things including food drugs etc.,,
As long as your calm your kiddo
Will get calm
No screaming or crying
10 seconds - that's it then the pinch /burn is done
Vs
A child curled in a ball not moving not eating crying day in and day out
That was reality on the lower meds
So Ds reminds him self it's worth it for 10 seconds


Remicade does not hurt at all
Just an iv
But must be done at a hospital and is a four hour infusion every 6-8 weeks
 
Caitlin84 said:
It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.
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Before starting with humira, I read a lot on internet and I was kind of scared, then I started with it and it was nothing. It hurts? Yes, but for me is even less than 10 seconds, and the pain is totally bearable.
 
Mr chicken said:
As long as your calm your kiddo
Will get calm
No screaming or crying
10 seconds - that's it then the pinch /burn is done
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He is very positive and calm right now. He is a smart boy that way, so I hope for no screaming and panicking.

I wondered why Humira was our doctor first choice?
 
Im on wk 6. So far bm is a little less but not great. still have horrid joint pain and swelling. Hope it helps joints soon. Dr. Said if im not significantly better ill befin 6mp in 2 months to help speed up the process.
 
I would say it took about four months for me to see a big difference with my stomach , and my joints have never felt better than they do now. Hang in there.
 
I've been taking Humira since Feb this year and while the D hasn't improved as much as I would like, my bloods are now good and I feel a lot better all round. Much less fatigued, better mood etc. I don't seem to have any side effects and I don't get a bruise or rash or anything at the injection site.
My arthritis has all but disappeared, amazing!

I can now mostly control the D with psyllium and if this is as good as it's going to get I'm fine with that. The only thing that really needs to improve are my fissures, but even they are getting more manageable.
 
I feel better about it now. I thought it was an intramuscular shot for some reason. A subcutaneous shot doesn't bother me.

Thanks guys!
 
Hi Humira users,
So I started using Humira a year ago and while not perfect, life was tolerable. About 3 weeks ago I started to flare up again. The flare gets worse daily. My GI is (of course) on vacation! I really don't want to go to the hospital because they just seem to default to prednisone. Anyone know what the protocol is when your meds no longer work?
 
Have you talked to the Gi about trying formula only ( boost ensure etc...)
Can be as effective steriods... Sometimes???

Typically flares equal
Bloodwork
Stool tests
Imaging
Scopes
Steriods/een ( formula only)
Then decide on med change

You may want to give the on call Gi a call
 
Mr chicken said:
Have you talked to the Gi about trying formula only ( boost ensure etc...)
Can be as effective steriods... Sometimes???

Typically flares equal
Bloodwork
Stool tests
Imaging
Scopes
Steriods/een ( formula only)
Then decide on med change

You may want to give the on call Gi a call
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Hi Mr. Chicken,

I've never heard about trying formula only. I'll have to ask.

As far as an on call GI, there isn't one.

You mention med change, I don't even know what other medicinal options are left. I've already been on Remicade!
 
Sometimes you can call the nurse at the GI office. Sometimes they will keep in touch with GI via email regarding more important issues with patients.

My daughter started to flare recently. Our GI moved her to a mostly formula (70%) diet and moved the Humira from bi-weekly to weekly. Maybe your GI can move frequency of your dosage?
 
Unfortunately my GI's office doesn't have a nurse, just a secretary. It's a disgustingly flawed system.
I suspect they will have to increase my dose as well. I'm just not sure how to obtain remission.
 
Angie's Mom, what type of issues do you have? I have a narrowing of the intestine which causes a back up. So when in a flare i suggest you back down to broths and ensure and nightly MiraLax.

If you have the runs issue refer to a B.R.A.T diet to soak up the juices in your belly and gut. Thats Bread, Rice, Applesauce and Toast.

Hopefully this proves to be of some help. Stay away from the steroids, im in my first taper and its hell. Im telling everyone i know to never EVER take dreadnisone prednisone.
 
Thanks Sunshine. Right now I'm back and fourth between diarrhea and constipation (no stool, just blood and mucus.)

I had a really terrible night last night so I think I might need to go to the hospital just to get some IV fluids. Wish me luck.
 
I was on Humira for over a year and lost my insurance, therefore lost the Humira. I have been able to keep my Crohn's under control up until the last three weeks. It has gotten bad. I just do not eat in order to work. I see my doctor on Tuesday (not soon enough). I am assuming I will go back on the Humira now that I have insurance again. As much as I dread it due to all the side effects I suffered from (headaches, sores all over my back and chest, alleriges so severe and I had never had them before). Right now all i can think about is getting back to eating. I have lost 14 lbs in the last three weeks.

I have read that going off of it and going back on it can lead to it not being as effective. I hope this is not true. I know I have 50 tests ahead of me to make sure I can go back on it, but I hope that goes really fast. Hate feeling like this and unable to eat.
 
Could you drink nutritional supplements like Boost or Ensure just to have some vitamins and calories while you wait?
 
They go right through me like everything else and give me the horrible pain. I just do not eat during the work day, when I get home i am eating egg whites and toast. I know those two will not kill me, do not stay with me long, but do not kill me.
 
I am so sorry to hear he has this at such a young age.. I didn't know this disease was found at such a young age. I am 26 was recently diagnosed with crohns in march. My dr prescribed me to Apriso and had me on the prednisone taper.. Apriso worked for about 3 months. I was so excited and thought my life was back to normal and then one day I woke up and I guess was my first flare since starting medicine but this flare has not went away..basically the meds worked for a little while and I became immune to them and now apriso no longer does anything for me. I'm miserable right now and am waiting on humira having to deal w my symptoms with out medicine, so actually I think this is best for your child to start right out with humira. When I went in to see my Dr. It was like he already knew he was going to have to start me on humira or something stronger and really pissed me off. I wish he would have just started me off with humira.. I hope all goes well..
 
Sometimes they (the Doc's) have to go through other meds first in order to satisfy insurance requirements. It is really unfortunate. But a lot of people have some quick success with Humira, so maybe it will work that way for you now that you are headed down that road.
 
I'm guessing we're not the most representative group. We either have doctors who were able to get us on Humira right away, whether or not we "truly" needed it, or we failed other drugs due to the severity of our disease. My understanding (could be wrong here) is that people with mild Crohn's are ok with the weaker drugs and diet. Maybe they have to be very strict on their diets, too.
 
Elektrikhd said:
I'm guessing we're not the most representative group. We either have doctors who were able to get us on Humira right away, whether or not we "truly" needed it, or we failed other drugs due to the severity of our disease. My understanding (could be wrong here) is that people with mild Crohn's are ok with the weaker drugs and diet. Maybe they have to be very strict on their diets, too.
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I'm guessing it's bc of insurance purposes. Mine I'm told is mild to severe but I'm guessing more severe... I'm very new at this it's only been a few months and I think it's so hard to figure out what my "triggers" are. Nothing bothers me right away. I always have episodes late in the night like 3 or 4 am and then 8 or 9 am in the morning.. so it's like I have had my breakfast lunch dinner and I'm fine and then every thing happens in the night or am...is this normal w ppl w crohns or do most ppl get effected right away and can pin point exactly what triggers symptoms?
 
Hi Clittle,
Nigtt is when the fevers set in , it probably happens throughout the day but you might not notice them. I suggest a food log , dont expect immediate reaction, it was not abnormal for a food to affect me for 1-3 days after ingestion. Your going to have to find thing to add and remove from your food list. I would start with no milk products, food low in citric acids and keep your sugar counts low, steer clear of high ruffage - one by one add or suptract things from your food list. You will start to see things that flare your symptoms.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 1.9 years - remission
 
Hello fellow Humirans. I have been on 40 mg injections every 14 days since March. In the last month I've had symptoms again, so my doctor is moving me to every 10 days. I feel like it's not going to work, but I'm trying to be positive. Any luck with that strategy out there? I am worried it will be 10 days, then 7 days, then double doses.... ugh.

Anyway, I had made it so I did my injections on Saturday since I get a nasty "hangover" the next day. With a 10 day period, that means my next injection is tomorrow, and i'll have to work through my hangover on wednesday. Anyone else get these?
 
I'm tired the day after I take my shot so I moved my day to Saturday evening. I'm a little tired at church but it's ok. I was told that a few day either way will not effect the drugs performance. It took about six months for me to feel better on Humira and many times they have to add another drug like Azathioprine. That's what did it for me.
 
So I had my colonoscopy yesterday and unfortunately they found over 1.3 feet of diseased bowel despite the humira. I have no idea where I go from here. I went to the E.R and the doctor told me, "well you don't look sick, so it's probably not as bad as you think..."

Turns out it was worse! Fantastic diagnostics at work!
 
Finally got insurance, got in to see my GI Doctor, ran all the tests and she called me in a starter pack to get me back on the humira. My pharmacy had it ready for pick up. YAY! Got there and to my surprise I owe $8,000. What the hell? I called me doctor spent hours trying to figure out a plan. met with a company to help get me on the Humira Protection Plan. Finally got the ball rolling and now I have to wait on my pharmacy to get approval for it. They informed this could take days. I am in such bad need of it. I have lost over 20 lbs, I can't eat anything. Just say a little prayer for me. I am not in a position to miss work and it is killing me to get through the day with no food. I know this will work out, i just needed it yesterday.
 
Is it possible to do the injection right after work to give yourself the longest amount of time to recover before you have to go back to work? Hope that made sense.

Maybe you'll move quickly to weekly injections and at least it will be easier to schedule...

My daughter was really tired for the first few months of injections but then I think her body grew used to it. Now she has moved to weekly and I notice that fatigue sets in about 4-6 hours after the shot. Not sure how that will work with school

I hope you feel better with the increased shot frequency. Also hoping you can "fake" your way through your work day in one piece.

I've never heard of people getting double doses - but you never know. I think at some point the GI will just give up on it as a treatment and move on to the next possibility.
 
Pilgrim said:
My daughter was really tired for the first few months of injections but then I think her body grew used to it. Now she has moved to weekly and I notice that fatigue sets in about 4-6 hours after the shot. Not sure how that will work with school
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Pilgrim- how does your daughter deals with the injections?

We are going for the 2nd opinion on Thursday, and next Friday we'll do the 1st shoot. Very scared. :(
 
Titanette said:
Finally got insurance, got in to see my GI Doctor, ran all the tests and she called me in a starter pack to get me back on the humira. My pharmacy had it ready for pick up. YAY! Got there and to my surprise I owe $8,000. What the hell?
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$8,000?! That's absolutely horrifying. I haven't been to work in three weeks and am really counting on the Humira (that I hopefully start Tues) to kick in enough so I can go back to work.
 
Ania said:
Pilgrim- how does your daughter deals with the injections?

We are going for the 2nd opinion on Thursday, and next Friday we'll do the 1st shoot. Very scared. :(
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At the beginning it was tough. She worried about it alot before hand (we have to drive to a clinic to have a nurse do the shot) we would drive with the soundtrack from the movie "Frozen" cranked up so she could sing. Then I could cry while I drove and she wouldn't notice :(

Somewhere about 3 months in, she stopped crying during the injection. We talked beforehand every time about how the injections meant that she would be able to eat (fill in the blanks - carrots, potato chips, whatever) - she had just finished a second 6 week session of Exclusive Enteral Nutrition before Humira. I think that helped her understand a little better - to make a connection.

I did take lollipops and would give her one to suck on right before the shot. It was a little bribe which she was happy to take.

She is 7 months in now. She counts through the pain of the shot which truly only lasts about 10 seconds. It is hard. But, they can get used to it. And in her case it has really helped her get some normalcy back into her life.

Your little one may be very tired after the first set of shots.
 
Pilgrim- thank you.
Do you add Lidocaine to the Humira?
Also-how tired would she get? Did she stay in bed because of that? What about school and being so tired? How long would this last?
 
We asked our doctor about Lidocaine. We were told that adding it unnecessarily prolonged the shot and in the end would probably just add to the problem of pain instead of helping. We have worked through the shots without it and now I am glad we didn't mess with it. There are parents here who feel it has been a great help, though, and I don't argue that. For us, she went without it and it is fine now.

For the loading doses, she was profoundly tired, and also would have a bit of confusion for a short while right after the shot(s). For the first two months really I made sure she could just come home and sleep for as long as she needed to (between 2-4 hours). As her body adjusted to Humira it was less time on each subsequent day until she got to the point where there wasn't really a huge fatigue difference. 2-3 months for us, or about 6 injections.

She is only 4, Ania, so school will be new to her in about a month. There is a lot to plan for with that I think with Crohn's. As for the Humira, we are on a Monday schedule. I haven't decided yet if it would be better for her to take it before school, so she doesn't have to worry about it all day and risk her being quite tired or maybe just do the opposite and have the shot after school. But it would colour her whole day, having to expect it later on. I don't know yet. Maybe another parent or even an adult who has to plan it around work will add in some advice.
 
There are two schools of thought on the lidocaine
If you inject it first then inject the humira
It makes the shot take longer which is what most doctors office would do .
Rheumotolgist however mix the two together
Humira syringe get the lidocaine added to it.
This adds a tiny amount of extra fluid for DS 0.2 ml of lidocaine in an 0.8 ml dose of humira . The lidocaine addition lowers the ph of the humira and decreases the sting
Again it's still only 10 seconds to inject so no increase in time .
If DS could get it at the ped office I probably wouldn't do the lidocaine since they would inject separately
But since I have to do it at home ( injections are not covered in the U.S. )
I prep the syringe first then call DS and inject so same amount of time - less pain

I know of other parents who tried both versions with lidocaine - didn't make much of a difference. Some use Emla cream to numb the skin but that doesn't help with the med burn .
As far as fatigue - DS still is tired the next day some but does go to school
We give it the morning so fatigue hits at night and he sleeps through most of it .
 
K will inject only 0.4ml of Humira plus 0.2 ml of Lidocaine 1%. My friend is a RN so she will come to do the shots. At least on the beginning...

I decided to do the shots Friday afternoon, so if he gets fatigued , he is home at least.

Now, I am thinking... Will he be able to play soccer Saturday morning?
 
This may all depend on where the shot was given...if in the leg, there may be some muscle soreness at the injection site. I've been on Humira about 2 years now, but in the beginning the muscle soreness was enough that I wouldn't want to be playing any contact sports for a couple days after. The injection site is sore to the touch...I can't imagine getting it hit with a soccer ball!
 
Ania said:
K will inject only 0.4ml of Humira plus 0.2 ml of Lidocaine 1%. My friend is a RN so she will come to do the shots. At least on the beginning...

I decided to do the shots Friday afternoon, so if he gets fatigued , he is home at least.

Now, I am thinking... Will he be able to play soccer Saturday morning?
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I would make sure he also drinks a lot of water before and after the shot to prevent migraine headaches. Play side effects by ear, personally I'm more lethargic from being sick than from the meds. I've also never had any muscle pain after injection but I do get a large injection site hive about 2 inches across.

Another trick I learned was to leave the meds out of the fridge for about an hour before injecting to lesson the stinging.

With any luck the benefits of the drug will far out weigh any side effects and temporary discomfort he might have.

Good Luck!
 
Ania said:
K will inject only 0.4ml of Humira plus 0.2 ml of Lidocaine 1%. My friend is a RN so she will come to do the shots. At least on the beginning...

I decided to do the shots Friday afternoon, so if he gets fatigued , he is home at least.

Now, I am thinking... Will he be able to play soccer Saturday morning?
Click to expand...

I take mine on Saturday evening. If I'm a little tired in church I get forgiven quickly=)
 
Angie's Mom said:
I'm more lethargic from being sick than from the meds.

With any luck the benefits of the drug will far out weigh any side effects and temporary discomfort he might have.

Good Luck!
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My son does not feel sick, almost has no pain ( maybe 6 days total since January). This is why I am afraid of the side effects and fatigue and migraines and pain associated with the shot. He won't be able to appreciate the relief the med brings.
 
Only 0.4 ml - how much does he weigh ??
I know the Gi started DS on 0.4 ml at age 9
But honestly he weighed too much - was close to the max weigh for the 20 mg syringe
- med did nothing for three months
Then we increased to 0.8 ml (40 mg ) syringe
Within 2 months he was good
Just could have saved a lot of time IMO if we had started with the right dose
The recommended weight range for the 20 mg is printed on the box
 
Even f he has no pain
Damage can be done
In particular with SI joint - it can erode or cause fusion of the bones
Add in delayed puberty , delayed growth /nutrition - takes way more energy when there is inflammation
Possible anemia again due to fighting inflammation even in the joints
 
I gained a little bit of weight on humira, but it is more because the drug enables you to eat again and stops the side effects of the disease that cause the weight loss.
 
When kids reduce inflammation their bodies can use the calories more effectively which leads to normal weight gain.
Ds started gaining weight after remucade and continued to gain weight at a normal pace on humira .
Linear growth started about 6 months later
 
Great! Now I put the puzzles together. K is skinny. Now I think it is related to the inflammation. I was afraid he might loose more weight with Humira, which would not be good.
I love you guys. You are answering all my inexperienced questions.

I called my pharmacy today to see how much will I pay for the Humira.
Shock!
The lady on the phone said 973$. I asked her if this is before of after the insurance and she said it is AFTER the ins. !!!! Regular price is 3300$ per injection.
Good thing I got that Humira card which brought it down to 5$.
Who can afford almost 2K a month?


Can you please explain a little the correlation between WBC and Humira?
K WBC is 4.6 which is the lower end I think.
 
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i seriously get tired of catching ever god damn cold sunder the sun...living with a grubby 5yr old brother dosnt help im sure, and going back to college classes wont either...anyone have any tips? I knew id have lowered immunity, and ie been taking every vitamin i could handle and yet im still taken down
 
Caitlin84 said:
$8,000?! That's absolutely horrifying. I haven't been to work in three weeks and am really counting on the Humira (that I hopefully start Tues) to kick in enough so I can go back to work.
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I feel for you. I am not sure how I have continued to work. It is basiclly the only thing I do. I finally got the Humira protection plan and now just awaiting the pharmacy/insurance approval. This cannot happen soon enough. After a 100 phone calls, come to find out the doctors office sent the HUmira to a retail pharmacy rather than a specialty pharmacy and that is why I owed so much. I think it is pathetic that I had to do all the leg work to really get the ball rolling in the right direction. I lack the energy to do anything. The good news is I will be getting it, possibly as early as tomorrow.
 
Hi folks, currently on Remicade infusions, alng with 100 mg Imuran daily. I would like go to Humara due to the convenience of self injection,,is anyone taking Both Imuran and Humara??
 
I have been on Humira and Imuran. I was admitted in to the hospital bcause the Imuran was too much medication for me. I had to stop Imuran, and remain on Humira. I have been on Humira for a bit over 3 years. May not effect you this way, but my system can only take Humira.
 
Twbuto said:
Hi folks, currently on Remicade infusions, alng with 100 mg Imuran daily. I would like go to Humara due to the convenience of self injection,,is anyone taking Both Imuran and Humara??
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I've been on Imuran and Sulfasalazine for 16 years now and added Humira a few years ago after trying Remicade. No problems so far with the combo.
 
dreamintwilight said:
I have not yet started on Hmira. I'm still in the process of being diagnosed. But my GI doc mentioned starting on a biologic once it was diagnosed and Humira is the one that is covered by my insurance plan. I assume I'll start on that.

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

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

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

I know my worry is premature since I am not even slated to start Humira yet, but was just looking to gain more knowledge about it. Thanks :)
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Drug reactions are only similar with crohn's with respect to both Crohn's and Humira reactions being individualized. I may have reactions that you won't experience and vice versa.
But be prepared for fatigue and other things. Your Dr. will advise you what to look for. Example being 5 months ago I had the flu, My Doctor ( in another state) advised me to get a chest Xray STAT! I replied, " why are you so adamant about a xray?" Because humira is a Immunosuppressant and there was a need to verify no infections. Point is do not put the cart before the horse. I understand your researching the drug, But most of what you will find may sway your opinion of the drug based on what you read here. You might not have those complications that others had. Humira has been a blessing for me, I am now overweight with a appetite that can't be controlled, three years ago if I was told that I would be overweight I would not have believed it.
 
Hi dreamintwilight,

It is not the needle stick itself that is so bad. Infact it isn't very different from any other injection. It is the medication itself that causes a burning/stinging sensation as it enters your body. Since each injection requires about 10 seconds to fully administer it is quite painful. The loading doses are considered the worst because it is usually 4 injections in one sitting. As for body fat, injections are done mid thigh or in the abdomin. The needle itself is shallow. I myself am very lean and have no troubles with injecting.
Be sure to hydrate well prior to and after your injection to prevent headaches, and best of luck to you for a successful treatment!
 
I am talking humira and Mercapturine. I have a question...For the past six months, every other month...I have ran a high temp...Like 103.00. I have been to the ER a few times. They found nothing. Any thoughts you guys? I am going in this time for a CT to see if there is an abscess? But, really? This is driving me nutso. They ran my blood tests, and I looked at it this morning. The one thing that stands out is the sed rate. Any input would be very helpful. I haven't been on line lately...So my signature is off..I am not taking Cimzia, and I can't figure out how to change...
 
Glad to say im starting to noticee some stomach improvements but nothing with my joint pain yet.go back nezt month for a dr. Visit and may still get 6mp added. Been on humira for 2 months.
 
I am a Crohn's patient. I take Methotrexate injections weekly. I am about to begin Humira shots. My question to those who take both drugs is.....do you take them on the same day?

Methotrexate leaves me pretty tired and slow moving the next day after my shot, so my concern is how I will feel if I take both the same day which is what I'd prefer to do.
 
hey guys! anybody on here have Crohn's Psorisis? then again, ive always had my psorisis even before a doc said i had crohn's. Anyways, when in icu my skin cleared beautifully, but when i started Humira i flared again, and now my doc says my Humira isnt working well. so what have you guys added to your Humira?

shes thinking 6mp, the chemo drug.

Ive read that Remicade is great for psorisis, what should, if anything, be added to that if i take it?

for some reason it dosnt seem that i hear anyone taking any one drug alone, always adding something to it.
 
Ds has taken mtx and humira the same day many times
He is on a once a week mtx dose and every 10 days humira dose so they often overlap in timing .
Folate daily ( even mtx day ) massively helps woth the fatigue
He takes 2 mg of folate a day .
 
SunshineSam said:
hey guys! anybody on here have Crohn's Psorisis? then again, ive always had my psorisis even before a doc said i had crohn's. Anyways, when in icu my skin cleared beautifully, but when i started Humira i flared again, and now my doc says my Humira isnt working well. so what have you guys added to your Humira?

shes thinking 6mp, the chemo drug.

Ive read that Remicade is great for psorisis, what should, if anything, be added to that if i take it?

for some reason it dosnt seem that i hear anyone taking any one drug alone, always adding something to it.
Click to expand...

I take Imuran and Humira; in the beginning its was Imuran alone. It really helped my psoriasis (which I've had since age six). When doc added the Humira, my skin cleared, my Crohn's cleared, and until this last week, all was good. I'm flaring with both issues currently. I hope you find a combo that works!
 
Most docs prescribe folic acid which is harder for the body to absorb
Folate can be found OTC and is easier to absorb
Ds Rheumo was ok with using folate instead
 
Today my son ( 10 yo) had his first Humira injection.

He was nervous all day.
I applied Lidocaine cream on his leg. Then mu friend-nurse mixed Humira with Lidocaine .
We put some ice and Buzzy Ladybug on the injection site.
K was playing a video game.
He asked if he could see when the needle is in . He kept playing.
Then he asked if she going to do it soon. She did, and when we looked the syringe was halfway empty. HE DID NOT FEEL IT!
AT ALL!

I am soooo happy. I was prepared for crying, panicking etc. I cant believe he did not feel anything. I think it is the Lidocaine that helped. Very glad. As a mom, very thankful.
 
Woohoo on the lidocaine
Yes the Emla cream works wonders
Glad he did great and you did too!!!
Much easier without tears
Ds does a lot better now than when we started 2.5 years ago but
We didn't know to use lidocaine cream or spray and we didn't know to add lidocaine to the humira syringe - it took a year to year half of tears before anyone told us ...

Hope fully it will kick in soon for him
But it tends to take 3-5 months to reach full strength
 
So I'm on Humira and flaring badly since the beginning of July. I have to see a new GI/ surgon but can't get an appointment until mid October.

My problem is this, I've become really dizzy to the point where I have a hard time standing. I've also been throwing up a lot. Any ideas on what could be causing these dizzy spells?
 
I am on Remicade, but will be switching to Humara, soon. Imuran is always being taken, 100 mg daily,,,dry heaves, occasional vomit episodes seemed to accompany the Imuran. Fatigue definitely an issue, but most symptoms are being improved. The reason for the move to Humara is the convenience of home injection as opposed to a hospital visit for the Remicade infusion. Hope all goes well for my fellow Cronnies, good luck,,.keep on trucking and thanks for of your feedback.
 
Ania
Why would you want to boost the immune system ?
These kids have hyper active immune systems so the meds bring them down to where all the "normal " kids are .
 
my little penguin said:
Ania
Why would you want to boost the immune system ?
These kids have hyper active immune systems so the meds bring them down to where all the "normal " kids are .
Click to expand...

It is our immune systems that are confused and attacking the bowels. These biologic meds sort of shut down the immune system to prevent this attack. Unfortunately, while doing that, it prevents our immune systems from fighting legitimate issues like viruses and infections. People using these meds should avoid crowded areas, wash your hands ALOT! And use lots of hand sanitizers!
 
Actually it doesn't affect your immune system enough to increase your risk of common colds etc... Only opportunistic infection risk is increased.
My kiddo has been on them for 4 years including lower school grades 2nd -5th grade where the kids at school are basically coughing all over each other. No issues he was actually less sick than my "healthy" kiddo
Biologics do not suppress the immune system to the same extent as some on meds for an organ transplant - they have to avoid crowds - not eat lunch meat etc...
Biologics are not that severe - heavy duty Ibd meds that's it
Hand washing yes - flu shot yearly yes
But otherwise that's it .
Most kids with Ibd have a hyper immune system meaning more than just their gut is affected( in my kids case skin/lungs/joints etc...) all over react to things and cause inflammation .

Always talk to your Gi before trying to "boost" an immune system
Our specifically told us not to .
Your Gi or Rheumo may have a different opinion
 
been on Humira for two months now, but its stopped working. My doc took blood work and said my blood shows its not workinng. ill see her tomorrow about weather its not workinng at all or if its working slightly and just needs some help.

my question to you, my crohnies, is what have you added to Humira in the past?
and if you had to quit, what if anything has worked other than Humira?
 
SunshineSam said:
been on Humira for two months now, but its stopped working. My doc took blood work and said my blood shows its not workinng. ill see her tomorrow about weather its not workinng at all or if its working slightly and just needs some help.

my question to you, my crohnies, is what have you added to Humira in the past?
and if you had to quit, what if anything has worked other than Humira?
Click to expand...

I'm sorry to hear this,

Let me know what your doctor says, currently Humira has stopped working for me too. Have you tried remicade? It is a fantastic drug that works really well. I developed drug induced lupus from it but that is very rare.
 
Just an interesting bit of news, the government of Ontario in Canada sent a form to doctors who prescribe Humira letting them know that they will not cover increased doses of Humira because their research indicates that there is no benefit to increasing the dose beyond the 1 injection by weekly. Further more, they sited "unknown side effects" and additional health risks as factoring into their decision.
So, anyone who receives Trillium drug benefits is S.O.L!
 

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