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Humira Club Support Group

my little penguin

Moderator
Staff member
Pilgrim
DS didn't do a loading dose pilgrim since he was already on remicade and stable .
He was 75-80 lbs at the time .
The maximum weight ( or slightly above ) for the 20 mg syringe
When it didn't work at 20 mg every two weeks after three months
Docs switched him to 40 mg every two weeks
That lasted a year
Then they added mtx and humira every 10 days that was last sept
He is now on 40 mg humira once a week and mtx 12.5 mg once a week at 100 lbs. which 50 lbs over his dx weight 4 years ago .
 
Soooo maybe someone knows the answer to this, I'm supposed to do my Humira tonight but I'm sick, like congested and a pretty bad cold, and I know when I used to do Remicade if I had a cold I had to put the treatment off, but is it the same with Humira? Should I wait until I get better?
 

my little penguin

Moderator
Staff member
Call your Gi
With DS he can get his humira when he is sick with a cold as long as he doesn't have a fever or active infection requiring abx .
Each Gi is different so I would call yours
 
My doctors kept increasing my Humira and I guess it did work for 4 years, but when I ended up in the hospital with another blockage and I swallowed the pillcam and it was stuck for 42 days, they sent my blood work to. Prometheus Labs in CA. I had plenty of the drug in my system and I did not produce antibodies to it. It just stopped working! Now I'm trying Entiviyo. Do these meds all work for "just a while"?
 
My doctors kept increasing my Humira and I guess it did work for 4 years, but when I ended up in the hospital with another blockage and I swallowed the pillcam and it was stuck for 42 days, they sent my blood work to. Prometheus Labs in CA. I had plenty of the drug in my system and I did not produce antibodies to it. It just stopped working! Now I'm trying Entiviyo. Do these meds all work for "just a while"?
I appear to be in the same boat as you! All of these meds just seemed to stop being effective. In Ontario Canada, they ran out of Entiviyo! They are only giving the drug to people with private insurance for the next few months. In the mean time, my doctor has jacked my Humira up to 2 pens a week to try and get me through until he can get me onto Entiviyo.

Fingers crossed it works for you!
 
I started Humira back in March, so far so good... My fistula and Crohn's are both in remission for the majority.. my fistula hurts once in a while... but I take the Humira shot again and it's gone.
But lately I have been feeling insanely tired... and nauseous! Is this normal to feel daily nausea?? Anyone else experience this? Like I said, I am in remission.. so I'm curious if this is possibly Crohn's related or Humira related...
Can't be pregnant, had a full period spot on the day 2 weeks ago!
I don't like this feeling!
 
I started Humira back in March, so far so good... My fistula and Crohn's are both in remission for the majority.. my fistula hurts once in a while... but I take the Humira shot again and it's gone.
But lately I have been feeling insanely tired... and nauseous! Is this normal to feel daily nausea?? Anyone else experience this? Like I said, I am in remission.. so I'm curious if this is possibly Crohn's related or Humira related...
Can't be pregnant, had a full period spot on the day 2 weeks ago!
I don't like this feeling!
Hi Sea Glass,

I'm sorry to hear you aren't feeling great. It is possible that you could be having upper gi symptoms. How is your weight? Has it dropped at all? Are your BM's normal? Remember, Crohn's disease can affect any where from your anus to your mouth.
I'd check in with your GI. Ask to have your Humira levels measured, it's a simple blood test done the last possible day before your next injection to see if there is enough in your system.
I hope you get some answers soon and return to good health! :strawberry:
 
Hi Sea Glass,

I'm sorry to hear you aren't feeling great. It is possible that you could be having upper gi symptoms. How is your weight? Has it dropped at all? Are your BM's normal? Remember, Crohn's disease can affect any where from your anus to your mouth.
I'd check in with your GI. Ask to have your Humira levels measured, it's a simple blood test done the last possible day before your next injection to see if there is enough in your system.
I hope you get some answers soon and return to good health! :strawberry:
Thanks for your response! I saw my specialist last week with cramp like pains in my left side (felt like the cramps you get while running).. lasted for 2 days.. he felt around both sides to see if there was any tenderness or hardness... nothing... I told him about the nausea etc and lack of sleep but always tired... and he didn't think there was anything to be concerned about. I have been reading many comments about nausea and Crohn's now, just find it strange that it's not associated with a flare up.. maybe it's foods I am eating that are causing it. I hate Crohn's... so different from one person to the next and just so unusual and annoying!
 
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
 
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
I had the total opposite response when I took the 4 loading doses. All the pain went away in my stomach within two days and I felt great for the first time in about 3 yrs. then I got the side effects(don't worry I seem to be the only one that gets the ones that I got). Keep at it because everyone is different and you might do very well with your next shots. Good luck!
 
I got really nauseous and felt sick with my loading dose. I did it on a Friday morning and felt fine till about 4 pm that day then got really tired and the nausea set in and I couldn't eat anything that night and was still sick all the next day. (the Humira people told me this was a common side effect)
I take my 2nd dose of 2 shots (40 mg each this weekend) Just wondering if this is going to make me feel the same way, or since it is only 2 shots maybe I won't feel sick. (again Humira rep said I will probably feel the same for the first 2 months of injections)
has anyone else had these side effects? How long before the shots stop making you sick?

Your input is greatly appreciated.
 
I got really nauseous and felt sick with my loading dose. I did it on a Friday morning and felt fine till about 4 pm that day then got really tired and the nausea set in and I couldn't eat anything that night and was still sick all the next day. (the Humira people told me this was a common side effect)
I take my 2nd dose of 2 shots (40 mg each this weekend) Just wondering if this is going to make me feel the same way, or since it is only 2 shots maybe I won't feel sick. (again Humira rep said I will probably feel the same for the first 2 months of injections)
has anyone else had these side effects? How long before the shots stop making you sick?

Your input is greatly appreciated.
I definitely was sick after my initial dose and after that they suggested that I do it at night so I can just go to bed right after. That seems to help cause I'm able to sleep off the effects, I think I remember having a semi rough day the day after but after going down to one pen each time definitely made the effects lessen significantly. Like I said I would definitely try to do it in the evening if that's possible for you.
 
Thanks that is very helpful. I will take it at night this time so hopefully I can sleep through the nausea. It did make me pretty tired. Thank you so much for your help and I am glad it seems to be working for you
 

my little penguin

Moderator
Staff member
DS started his at night as well
To sleep through anything
He didn't do a loading dose since he is a kid
He was tired the day after injections for a while
Since his body was healing
 
Had my first Humira shot two days ago. Due to a miscommunication, we received the syringe and not the pen, I was not amused! But after doing the syringe (which was not so bad but pretty painful) I'm sure the pen will be a breeze.
 
Hi! My name is Dana and I'm so excited I found this group 😊😊 I've been on Humira now for a little over a year. It works great for my Crohn's but I'm having trouble staying well. Over the last six months I've pretty much stayed sick with some type of sinus or upper respiratory infection. I've been on 7 antibiotics in the last few months and nothing has cleared it up. I will feel better for a few days but then it's back. I have an apt with an infectious disease dr and they are going to do some labs and a chest CT. Has anyone else experienced this problem?? I know it lowers our immune system but I've been sick for a long time now.

I'm looking forward to getting to know everyone and so excited about all the support 😊
 
True, but I didn't do it myself, the nurse did and she did it as fast as possible. Also, psychologically the pen is better if you know what I mean :)
 
This is my second no sting injection since I started a year ago and I just had to share. After a year of having my Humira shot sting, I learned to leave the pen out at room temperature for the day. No sting then! Humira can stay out of refrigerator for 14 days and it says this in information package I receive with each shipment. After that though it needs to be tossed. I used to leave it on counter for 30 minutes and that was not long enough. I am thrilled!!
 
This is my second no sting injection since I started a year ago and I just had to share. After a year of having my Humira shot sting, I learned to leave the pen out at room temperature for the day. No sting then! Humira can stay out of refrigerator for 14 days and it says this in information package I receive with each shipment. After that though it needs to be tossed. I used to leave it on counter for 30 minutes and that was not long enough. I am thrilled!!
I do this too!! I also ice wherever I'm gonna do the shot for a couple minutes before I start and that has made the pain more tolerable or gone completely depending on how long I ice it for
 
We use syringe, keep Humira in room temp. for 6-8h before the injection, ice, and it is painless.

my little penguin- how is DS doing on 7 days injections?

In addition to my son diagnosis, my husband was diagnosed with MS :( 2015 is not the best for us .
 
We are repeating MRI in Dec. Then January visit, blood work. Hopefully we will be able to do Humira once a month and see what will happen.
 

my little penguin

Moderator
Staff member
Humira dosing is not once a month
The half life of the drug is two short
Standard dosing is once every two weeks
High dose is once a week
They don't move out to once a month at all
:sorry:
If you try to move out further the drug isn't as effective and risk antibodies forming

Hope the MRI shows things are improving
 
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
It does take a few months for Humira to start taking an effect. It has had me in remission for about 4.5 years now. The loading doses are the worst as far as side effects. They most likely will go away over time. If not then there are other options.
 
Hi! My name is Dana and I'm so excited I found this group 😊😊 I've been on Humira now for a little over a year. It works great for my Crohn's but I'm having trouble staying well. Over the last six months I've pretty much stayed sick with some type of sinus or upper respiratory infection. I've been on 7 antibiotics in the last few months and nothing has cleared it up. I will feel better for a few days but then it's back. I have an apt with an infectious disease dr and they are going to do some labs and a chest CT. Has anyone else experienced this problem?? I know it lowers our immune system but I've been sick for a long time now.

I'm looking forward to getting to know everyone and so excited about all the support 😊
Hey Dana! Have you had your appointment yet with the infectious disease doc? Welcome to the group and I hope you find out something soon!
-Rebecca
 
Hello Everyone!

I am going to be starting Humira in the next few weeks pending drug coverage.

I was Dx in June 2008 with mild Crohn's. I was on Pentasa (4000mg/day) until June 2015, then was moved to Imuran after my Crohn's progressed to be less than moderate, but more than mild. Oh good ol' grey areas!

I was taken off Imuran as it was causing my WBC to drop dangerously low and my Dr didn't want to risk me getting a serious infection. Methotrexate not an option as I'd like to have kids in the next few years and the Dr doesn't want me to risk being on it.

She told me my only real next step was to go to a biologic. I'm not nervous about the needles, just a little about the side effects and I know its a bit more aggressive of a treatment than what I need.

Wanted to connect with those on the moderate side of the spectrum and how Humira has been working for you!
 

my little penguin

Moderator
Staff member
Focus on possible side effects
Key word possible
DS is almost 12 and has been on humira for almost 3 years
No real issues
Gains weight and grows
Good luck
 
Hi

diagnosed with Ankylosing Spondylitis and apparently crohn's (AS gives me more problems, I still have gut twinges etc from time to time but so long as I don't overdo the diet I tend to ok-ish). Was approved for humira (for AS) after 3 months. Left knee is blown out but it's ok, some friends pulled together and got me an Irish blackthorn cane so I have something to shake at teenagers rolling by on Skateboards (hehe).

Was expecting pain. So packed up the fishing gear and went to my favourite spot. Injected myself there. Didn't hurt. Caught a fish and came home.
 
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
Four!! Goodness me i thought the loading dose was 2 . Thats what I had @ least. Hope you feel better & quickly.
Best Wishes
Grant
 
I went to pick up my Humira yesterday and found out that my copay for it is now 4xs what it was! Anyone else experience this?
 

my little penguin

Moderator
Staff member
Do you have my humira copay card?
It covers the difference between your insurance and out of pocket .
If you take humira more than Every two weeks you need to call my humira and ask for an escalating to get it approved for more .
 
Hello/,

Been on Humira for 4 months now. Not sure if it's going to fully put me in remission. I still have bad days. How long does this Humira suppose to take, and do I still need to maintain a crohns friendly diet? Meeting with my Humira nurse tomorrow hopefully she can answer my questions.
 
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!
 
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!

I wish you luck my friend..[emoji111]️
 
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!
The fatigue used to be a problem for me also. It used to knock me out within 15 minutes. The past 3 doses, it has not. Hopefully that will pass for ya. Never been sick on it, but always have a migraine all of the next day. I think as your body adjust, so does the side effects.
 
I believe the fatigue has to do with the B nutrition that your body is not getting. That's why my doctor put me on B12 injection, because my B levels were low, but that might be different for others. I do get the headache the day after I take my Humira injection. I always have fatigue.
 
I take the centrum silver mens +50. I take the vitamins for the older men because it has more in it, plus fish oil. I also take two a day instead of one. Because as you know, most food runs right through us.
 
I take the centrum silver mens +50. I take the vitamins for the older men because it has more in it, plus fish oil. I also take two a day instead of one. Because as you know, most food runs right through us.

Oh yeah!! I do take fish oil, but only one a day. Thx for the response [emoji106]
 
Has anyone ever had issues with bruising at their injection site? I took my shot last Wednesday pm. I know I looked at the site the next morning with no bruising or anything. I didn't notice anything in Friday either. I was in a bit of a rush this weekend, so I didn't look. But I've got a deep purple bruise there today. No bruising anywhere else that I have seen.
 
Hi BlueEyes, I got some bruising when using the Pens. But since using the syringes-nothing. I wonder if its the punch so too speak of the pen that causes the bruising. Certainly when using the syringes I gently insert the needle in & find the whole experience far more pleasant.
Best Wishes
Grant
 
Hello/,

Been on Humira for 4 months now. Not sure if it's going to fully put me in remission. I still have bad days. How long does this Humira suppose to take, and do I still need to maintain a crohns friendly diet? Meeting with my Humira nurse tomorrow hopefully she can answer my questions.
I would maintain the crohn's friendly diet until you know Humira is working. If you have been on it for 4 months I would talk to your GI and see if something else could do better for you. It can take a few months for Humira to really get going. Some people do need to go to weekly injections.
 
You might have to stay on somewhat of an adjusted diet even in remission. I avoid all milk and milk products. I try to limit my cheese to long aged cheese, or at least avoid large amounts of normal cheese. Even soy and Almond milk affect me. Still I can eat most other normal things, Oh and I never touch alcohol. Still some things affect me and stimulate some symptoms but they clear in a few days.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 1.5 years - remission
 

my little penguin

Moderator
Staff member
Second the stay on the crohns friendly diet
DS is on the crohns exclusive diet with humira per his Gi
Basically fruits veggies lean non red meat and fish
No sugar or fillers - nothing packaged in a nut shell
 
Yes, I have found that if I maintain a friendly crohns diet I tend to have more better days than bad. It's tough and you have to give up those foods that you like, but well worth it. I'm on Humira and I eat chicken (white meat), fish, rice, spinach and small amount of gluten free Cheerios plus almonds for snacks. I think it's important to limit my sugar intake and my meal portions.

I do eat some non acidic fruits to. Bananas are great!!
 
Has anyone ever had issues with bruising at their injection site? I took my shot last Wednesday pm. I know I looked at the site the next morning with no bruising or anything. I didn't notice anything in Friday either. I was in a bit of a rush this weekend, so I didn't look. But I've got a deep purple bruise there today. No bruising anywhere else that I have seen.
I have bruised once due to my leg wasn't relaxed upon injection. It took a day or two to show up.
 
Took my Humira about an hour and a half ago and now I'm feeling nauseous[emoji17] has anyone experience this after taking your injection? I've been feeling pretty good the last few days until now.
 
I just had my shot. I forgot about the slightly tingling/numb tongue the first shot, just got the tingles about 10 minutes after and remembered. Need to write this stuff down... Partner is looking at me weird because I keep purring hehe.
 
I have been on my humira now for 7 weeks and I feel like it is really working. I also take azothiapran. But I feel better and am back at work. I only go to the bathroom 2-3 times per day and I am getting happier. But I am wondering if I should be taking more supplements? I take Vitamin D, Fish Oil, Calcium, and probiotics. I just worry about side effects of this medicine with osteoporosis (which runs in my family) and I just want to be as healthy as I can. Do you guys take a lot more supplements? Any advice?
 
Been told today to stop using it after 4yrs 11mths as its no longer working. However IMO it totally did me proud for the majority of time.
Rgds
Grant
 
I have felt nauseous after every humira shot so far. I just started the 1 shot and it makes me feel sick about 3 hours later. They told me that should go away after a month or 2. I hope it goes away for you as well.


Took my Humira about an hour and a half ago and now I'm feeling nauseous[emoji17] has anyone experience this after taking your injection? I've been feeling pretty good the last few days until now.
 
I've had two doses of Humira, and thank G-d everything is going well. The only problem is that my second time, when i injected my self, it hurt so much i started to let go of the pen. Luckily someone right next to me held it in, but i can't hold it in myself b/c of the intense pain. Any tips?
 
I've had two doses of Humira, and thank G-d everything is going well. The only problem is that my second time, when i injected my self, it hurt so much i started to let go of the pen. Luckily someone right next to me held it in, but i can't hold it in myself b/c of the intense pain. Any tips?
I always have my wife give me the shot. It hurts almost every time and I just can't do that to myself. Humira has put me in remission, so it is worth it.
 
Little Penguin- is DS taking Vit D or Fish Oil? If so, what doses.
I see you added SS to the list. I am sorry. How is he doing?

We are doing really good with Humira. No pain. Injections became a part of our life's routine. No big E like you said. I am still worried about possible side effects.. but what can I do? Life.
 

my little penguin

Moderator
Staff member
Ania to feel better I read the full insert on children's Tylenol which I know I gave both kiddos a few hundred times without any issue
But read those warning on the insert on possible side effects - beyond scary


Glad things are old hat now

DS is fine no reoccurrence of SS

He had low vitamin D for a very long time so Gi has home take 2000 Iu
But checks his levels at least once or twice a year to make sure he isn't getting too much kwim

Check with your Rheumo before giving any supplements

DS doesn't take fish oil
He eats salmon once to twice a week every week
Plus avocados / olive oil and canola oil all high omega 3 foods in his diet

He follows the crohns exclusive diet which is suppose to be geared to reduce inflammation etc...
So lots of tomatoes / strawberries no red meat
Lots of fish
Only fresh fruit /veggies no canned or frozen food
No packaged food etc...
 
I have been on my humira now for 7 weeks and I feel like it is really working. I also take azothiapran. But I feel better and am back at work. I only go to the bathroom 2-3 times per day and I am getting happier. But I am wondering if I should be taking more supplements? I take Vitamin D, Fish Oil, Calcium, and probiotics. I just worry about side effects of this medicine with osteoporosis (which runs in my family) and I just want to be as healthy as I can. Do you guys take a lot more supplements? Any advice?
A multi vitamin, vitamin c in addition to B12. It is true hat we have to stay as well as possible, to stay out of the hospital. I personally take B12 injections a week; however, I had 13 inches of my small intestines removed. Too much of anything is not good, but since we aren't able to each a lot of vegatables and salads...anything we can do to help ourselves is great. Sounds like you are on the right track. Stay positive! :)
 
I've had two doses of Humira, and thank G-d everything is going well. The only problem is that my second time, when i injected my self, it hurt so much i started to let go of the pen. Luckily someone right next to me held it in, but i can't hold it in myself b/c of the intense pain. Any tips?
Keep you pen in room temperature for at least 4 hours. It helps with the pain because its not cold. I have been on humira for over 3 years. I always took my shots in my legs. I recently moved to my stomach....I couldn't believe how much easier and better it is than my legs. I hit a blood vessel a month ago in my leg, and just decided to change it up. I was terrified to try my stomach....I couldn't believe I didn't try before!! My legs took a beating...but leave the shot out of fridge for about 4 hours. "Changed my Life, trust me". I can say...I am giving you some good advice :)
 
Ania to feel better I read the full insert on children's Tylenol which I know I gave both kiddos a few hundred times without any issue
But read those warning on the insert on possible side effects - beyond scary


.
As always, you calmed me down.( well, I even smiled when I read that) I like your perspective - simple and so right. Thanks
 
I've had two doses of Humira, and thank G-d everything is going well. The only problem is that my second time, when i injected my self, it hurt so much i started to let go of the pen. Luckily someone right next to me held it in, but i can't hold it in myself b/c of the intense pain. Any tips?
I leave the pen out at room temp as well. I take 2 injections a week and I agree that the stomach is better. Another trick is to place an ice cube on the injection site until it's good and numb. The pain is from the actual medicine and not the needle itself. (my husband actually has to give me my shots!)
 

my little penguin

Moderator
Staff member
Adding lidocaine to the humira syringe
Lowers the ph and makes it hurt less
Would not recommend leaving the med out more than 15-30 minutes
Per the humira website
If you leave it out longer check with the manufacturers of humira
 
Adding lidocaine to the humira syringe
Lowers the ph and makes it hurt less
Would not recommend leaving the med out more than 15-30 minutes
Per the humira website
If you leave it out longer check with the manufacturers of humira
Now Humira info says it is good up to two weeks at room temp but to remember that you start counting when it first comes out. So no putting it back in the fridge and thinking it can keep longer. We let ours warm up overnight at room temp before injection day. Seems to help.
 

my little penguin

Moderator
Staff member
I realize the packing info says up to two weeks but that accounts for shipping to your house or pharmacy
Again if it's more than 15-30 minutes talk to the humira rep
 
Hey all.

I'm going to be starting Humira next week. Having my loading dose on Monday. I'm starting to get quite nervous about it. :(

I was diagnosed in 2010 and am currently on the following medication:

4x 1g Pentasa Sachets
2x 20mg Omeprazole
2x 210mg Ferrous Fumarate
2x 50mg Imuran

I've also been on Pred during flares. I've had about five since being diagnosed. My CRP has never really been under control, always between 35-48 generally. My most recent test showed it at 45, which was a couple of weeks ago. My Crohn's consultant said Humira is the next logical step for my treatment, and warned if I left my CRP at this level then I would encounter a lot of problems in the future.

I've been feeling so tired since Thursday, and have also lost my appetite with a tad bit of nausea mixed in too. I've been on the loo 7ish times a day, where as my normal is around 5. I'm concerned this is the start of another flare although I can't be sure. My bowel nurse said the best thing for me is to just start the Humira.

I've read a lot of people feel really sick after their first dose. How long did that last for you guys? And how long does it take until you start to feel better? :( Is there a different medication I should ask my consultant about before I start Humira, or should I just follow his advice and start it ASAP? I'm so confused and worried about it, I don't know what would be for the best..
 
Hey all.

I'm going to be starting Humira next week. Having my loading dose on Monday. I'm starting to get quite nervous about it. :(

I was diagnosed in 2010 and am currently on the following medication:

4x 1g Pentasa Sachets
2x 20mg Omeprazole
2x 210mg Ferrous Fumarate
2x 50mg Imuran

I've also been on Pred during flares. I've had about five since being diagnosed. My CRP has never really been under control, always between 35-48 generally. My most recent test showed it at 45, which was a couple of weeks ago. My Crohn's consultant said Humira is the next logical step for my treatment, and warned if I left my CRP at this level then I would encounter a lot of problems in the future.

I've been feeling so tired since Thursday, and have also lost my appetite with a tad bit of nausea mixed in too. I've been on the loo 7ish times a day, where as my normal is around 5. I'm concerned this is the start of another flare although I can't be sure. My bowel nurse said the best thing for me is to just start the Humira.

I've read a lot of people feel really sick after their first dose. How long did that last for you guys? And how long does it take until you start to feel better? :( Is there a different medication I should ask my consultant about before I start Humira, or should I just follow his advice and start it ASAP? I'm so confused and worried about it, I don't know what would be for the best..

I had my loading dose three weeks ago and just had my second dose past Friday. Honestly, I didn't feel sick.. after the first dose, I felt tired and fell asleep; when I woke up about an hour later, I felt fine and good :D:D
For me, I ended up having bowel resection and removed about 1 foot of my small intestine before I started Humira... so hopefully, I will never have that terrible blockage again with this medicine! If your GI thinks you need it and your symptoms are not getting better with the medicines that you are taking, I think starting Humira ASAP is the best option you have at this point..
 
I dont feel sick after my shots. I do get sleepy. Headache every once in a while. A few days before i do see more symptoms. Been on humira 5 months. I will be switching to remicade if approved by my insurance.
 
Hi my name is Sylvie, 23 yrs old and I was diagnosed with crohn's at the age of 16. My Dr. has recently asked me to consider starting Humira because the Azathioprine isn't being as effective anymore. The only symptoms I get is blood in my stools (all the time), but other then that I do not have cramping or much frequency, and he said my colonoscopy showed worsening of the disease.

My question is for the ladies!
Since I'm only 23, I would like to try and conceive in the next 2-3 yrs and I am wondering if there are any of you who have taken Humira while trying to conceive or during/after pregnancy? My concerns of course are the effects that it has on the baby or if taking Humira will effect my chances of a pregnancy.

I would appreciate any insight :)
 
Has anyone ever gotten bruising on abdomen after an injection near but not at injection site? I have a new bruise about an inch under my belly button. I injected in the right lower quadrant, and it's bruised too
 
Has anyone ever gotten bruising on abdomen after an injection near but not at injection site? I have a new bruise about an inch under my belly button. I injected in the right lower quadrant, and it's bruised too
Ive never injected there but I do get some bruising once in a while on my leg.i noticed when I leave the pen out for an hour before injecting it usually doesn't happen.
 
Has anyone gotten to the point where they can't inject thenselves anymore? Like not physically but mentally. Seems like each time it takes me longer and longer to push the button.
 
Yes, I went through the same thing. Beyond the mental aspect of it, for me it was the constant bruising- I could only inject into my legs using the auto-inject pen, which quickly became too much for me so I switched to the regular syringe. I now have the option of injecting into my stomach or legs. I can control the rate of speed in which the Humira goes in (a true God send, trust me), and I now have ZERO bruising or residual pain! This is terrific as I now have to do the injections weekly.
 
Hi everyone - I'm joining the club. I'm meant to be having my loading dose on Wednesday, although I have picked up a cold from my son so I'll have to see whether they want to postpone it.

I've had to come off azathioprine due to CMV colitis and low lymphocytes. The CMV colitis has been zapped with some antivirals, so now I'll be trying the Humira to see if I can get back into remission. I'm bloomin' fed up with having to leave the table during dinner to have to go to the loo.

Fingers crossed!!
 
I use the syringe I can't inject myself so I get hubby to do it. I can even watch him do it. The stuff stings really bad going in hubby does it slow and I get it out of the fridge an hour before injecting it. Does anyone have this problem as well.
 
I get it out of the fridge an hour before injecting it. Does anyone have this problem as well.
Hi Ang71-- get it out of the fridge few hours before the injection. We let it sit on the counter for 6-8h. Ice the injection area. It helps.
 
I leave it out of the fridge for 30 minutes and it does help , and sometimes I delay the hitting the button , I find putting on headphones with loud upbeat music helps a lot and distracts from the click and burn(slight) .
 

my little penguin

Moderator
Staff member
I would ask your Gi
Every doc is different
Ds is permitted if he doesn't have a fever , active infection or need abx
But again every doctor is different

So please ask yours
 
For those on the pen here is an idea. I hear the click and tense up and I feel it. I used noise canceling headphones and I didn't even feel the needle go in. Feel the after the fact as in after the shot is done. But I didn't feel it go in my leg at all.
 
I've just been reading all the posts about injecting and the pain. They made me laugh. We Crohnsies have far worst pain than the 10 seconds of a Humira injection. Yes it is painful, it stings and it's not at all pleasant - but it is over so quickly. I'd sooner have this than the pain of a blockage and a trip to hospital in an ambulance - which I sometimes do twice a year. I sing a song really loudly whilst I do it to distract myself... And I think about the good it is doing. I think you're all much braver than you realise coping with the illness in the first place.
 
I've just been reading all the posts about injecting and the pain. They made me laugh. We Crohnsies have far worst pain than the 10 seconds of a Humira injection. Yes it is painful, it stings and it's not at all pleasant - but it is over so quickly. I'd sooner have this than the pain of a blockage and a trip to hospital in an ambulance - which I sometimes do twice a year. I sing a song really loudly whilst I do it to distract myself... And I think about the good it is doing. I think you're all much braver than you realise coping with the illness in the first place.

Noise canceling headphones. I'm tellin ya. Can't even hear the dreaded click
 
If the injection is hurting it might be where you are injecting it. Fatty tissue is best . I let mine sit for 30 minutes out of the fridge. Also let the alcohol swabbed prep area dry before you inject through it. I tend to put pressure on the pen inject and give it a 10 count , before I release pressure and remove the pen. Seems to work for me.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 2.5 years - remission
 
Well, I finally had my loading dose today (it had been postponed as I had a cold and sore throat last week).

After reading all about the pain I asked to have the syringes so I could slow down the rate it went in. I was really miffed to be presented with four pens instead and the nurse had to persuade me to try it as they didn't have any syringes.

I chose my stomach for all four injections (my thighs are very sensitive and bruise easily). The nurse did the first one, carefully watching my face to see my reaction. Well I kept waiting for some sort of searing pain to kick in and asked the nurse if it took a while for that to happen - it never did. She did one more pen and then I did the other two - all the same: a tiny sharpness but no real pain. Fantastic!!

Maybe it's because I have decent wodge of fat on the front of my tummy - at least it's good for something!! Maybe I'm just one of the lucky ones?

Anyway, a very pleasant surprise - which is something we Crohnies can't say very often!
 
My first losing dose was Monday, too. It's been an interesting experience thus far. I'm hoping for remission, its been 2.5 years from my first symptoms and nothing has helped yet. I requested the syringe but was pressured by my pharmacist and Dr.s to get the pen so I'm going to give it a go.

I'm glad the pen isn't a problem for some but for me it was a painful experience.

#1 - right leg - OW!
#2 - left leg - Ow.. oh, hey, not so bad
#3 - right belly - HOLY MOTHER OMG TAKE OUT THE HOT KNIFE (Etc. Censored)
#4 - back to left leg - Ahhh that's refreshing after the belly catastrophe

I like to think that I'm very tolerant of pain, being stuck often plus the crohns pain, but this was a reality check for sure. Maybe in my excitement I didn't let the alcohol dry but I feel like it was the meds that burned. Pens sat out for almost 2 hours, too. Also, I'm 6 ft 150 lbs, not much meat on me.

The biggest scare was waking up to a huge bruise on my left leg, 6x4 inches yellowish-green with a chunk of dark, and several 1/2 inch sized bruises on both legs. My Ambassador called to check in, told her my situation and she says "Uhhh, that's not good. Call your doctor. I'm reporting this through my channels" (as a side effect I assume?). Spent that day calling pharmacist and Dr.s with no response. Called again today, no response. I guess I'll be OK seeing as how I'm still alive but it's pretty frustrating giving up so much, working with so many healthcare professionals, traveling hours and spending thousands just to be ignored when the insurance money for the crazy expensive drug clears. Why do I travel so far too be treated like cattle? I'm considering Mayo clinic at this point as it's in my network.

I'm not giving up, by the way, and will take next dose as scheduled. I'm sorry this is so negative but it's my experience. I'm very glad it has worked for others and I do hope I'm next in line for relief.

Here's to better health in the new year.
 
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I'm really sorry you had such a bad time with it. Perhaps this will strengthen your case if you want to push them to supply you with syringes next time as so many people seem to find it easier to control the administration of the dose that way.

They really should listen to you. They should know that any medication is only worth giving if patient compliance is good, and that means making it as manageable and stress-free as it can be for you.

Let us know if you are able to get the syringes if you decide to change.

Also, I hope it didn't seem like I was gloating that it went so well for me. It's just that I was really quite anxious after reading so much about how painful people find it, and it was such a relief that it wasn't a problem in the end.

I just wanted to let other potential Humira takers know that it might not necessarily be as bad as they expect. It's good to hear all experiences though - fore-warned is fore-armed, and all that!
 
My son is on Humira since August. Well, he got a cold. Typical running nose, fewer , but not so bad etc
OMG, poor kid! Since last Saturday his nose wont stop running. He has blisters around his nostrils and lips. It hurts to blow his nose.
How many more days will it last?
 

my little penguin

Moderator
Staff member
Colds don't tend to last any longer - my kiddo is on humira /mtx weekly for both.
He just got over a cold which started two days after his non Ibd sibling .
Yep he is better but his sibling is still sick.

Have you put vasoline around him nose /lips to protect them until they heal?

Notified his Rheumo of the fever ?
Any fever and both docs get a call right away they can tell you how to handle the humira

Hugs
 
Have you put vasoline around him nose /lips to protect them until they heal?

Notified his Rheumo of the fever ?
Any fever and both docs get a call right away they can tell you how to handle the humira

Hugs
Yes, we apply Vaseline+triple antibiotic ointment .
I called the reumo about the fever, and he said if it is within normal range and no longer than 3 days , do nothing. Fever ( highest 101.2) went away.
Running nose still on.

We have a post MRI visit with the reumo this coming Monday, but couldn't do a blood work because of the cold :(
 
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