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Got Humira loading dose. Made me drowsy and somewhat nauseated after. Came home and had a nap. Still a little queasy and overall just don't feel well.
Mtx injection later. Nurse said it's fine to do it as it's an entirely different injection site.
 
Have any of you guys been told not to stop taking Humira. I was told not to stop because body can build anti bodies to Humira. Put me in hospital for 6 days. now back on it every 7 days.
 
I have some weird reactions with Humira,1st if I take shot on my right side couple inch from belly button it will swell up size of orange,on left side same distance from bb,no problem. 2nd reaction I get several small welts on diff area of my body at times. I take shots every 7 days on day 4 or 5 my skin breaks out n rash,then when i get injection fine till day 5 starts over n over been like that now over 10 years. Humira is worth dealing with side effect 4 me.
 
I was told to take an antihistamine before injection if there's an injection site reaction. I didn't have one...though the left thigh site did swell a little and was sore. That injection stung like crazy though so wasn't surprised.
 
Maya142 said:
I agree with my little penguin - I would not stop Humira. I would definitely get a second opinion before you even consider that.

My daughter has Juvenile Ankylosing Spondylitis. She was diagnosed with Juvenile Spondyloarthritis, and then it progressed when she was 16, despite treatment with anti-TNFs (like Humira/Remicade).

She was diagnosed with JSpA at 12. She is now 19 and is quickly running out of medication options. The thing with stopping a drug like Humira is that you can build antibodies to it if you stop it, and it may not work if you need to restart it. There are only a few drugs used for JSpA and so your options are very limited - even more so for kids who are diagnosed at a young age.

My daughter has always been on anti-TNFs but the disease progressed anyway. She has permanent damage in her SI joints and her hips and her right knee. We expect that she will need a hip replacement in her 20s. She is in pain all the time and is often up all night in pain.

I would not go off an anti-TNF even if he is doing well because research shows that most people with AS flare within a year of stopping anti-TNFs. The last thing you want is for the disease to progress. Once damage is done, it's done and there is nothing you can do about it.

And then if you have to put him back on Humira, it may not work and he will have lost one of his drug options (and since there are only 4 anti-TNFs, it's quite a big deal to lose one).

I would definitely get a second opinion and do some research before considering taking your child off Humira.
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Thank you. I have a lot to think about now.
I am very scared of possible long time side effect from Humira. I am also scared of arthritis.
The doc said we could possibly stretch the Humira to every 3 weeks, just to keep it in the system. Then do MRI once a year to monitor.
We have another app in April, so I will talk to her about my concerns a little more.
Thank you again Maya142. I really appreciate your comment.
 
When you increase the time between shots you still increase the likelihood of antibodies forming and the med not working . The half life is still the same.
Many researchers and docs tried this with remicade -
Standard is 8 weeks some tried 12 weeks and then folks developed antibodies .

Honestly damage from JAS is much worse then possible side effects .
Since once damage is done it's done
 
Well after being on Humira just about year now a recent MRE showed around 30 cm of inflammation. I'm not terribly surprised because I had been slowly going down hill for months now. I really only had the 1st month after the loading doses that was really good.

Now going to weekly, hopefully that will do the trick otherwise it is going to be Remicade.
 
Layla said:
Well after being on Humira just about year now a recent MRE showed around 30 cm of inflammation. I'm not terribly surprised because I had been slowly going down hill for months now. I really only had the 1st month after the loading doses that was really good.

Now going to weekly, hopefully that will do the trick otherwise it is going to be Remicade.
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Hoping for you this does the trick. So frustrating, though. The waiting for something to work. I just had my second dose of humira on Thursday along with my methotrexate. No changes for me...infact my guts have been giving me ugly pain since last night. Still exhausted and fevered.
 
humira helped me pretty quick. after 12 days seen improvement.
after 5 months inflammation comes up again.
then going to weekly. until now everything is good !
 
my little penguin said:
When you increase the time between shots you still increase the likelihood of antibodies forming and the med not working . The half life is still the same.
Many researchers and docs tried this with remicade -
Standard is 8 weeks some tried 12 weeks and then folks developed antibodies .

Honestly damage from JAS is much worse then possible side effects .
Since once damage is done it's done
Click to expand...

How much did you pay for Humira?
 
Hi

iam new to this site,my husband diagnosed with Ulcerated Stricture they call it as Crohn's but after 3 yrs of dragging not to take Humira/remicade now we had to make choice,doctor advised strictly he need to take injection so we preferred to take Humira?please give me some insight abt Humira?
I heard medicine cost lot more not sure if we can cover?heard abt assistance program?did they run all ur income proof?
 
kavya said:
How much did you pay for Humira?
Click to expand...

Hi Kavya.

I have been on Humira for over 4.5 years. I am on the Humira co-pay assistance plan, or I would not have been able to afford it. I pay $5.00 a month for Humira. That I can afford. If you have insurance the co-pay assistance plan will help with what insurance doesn't cover. If you are uninsured they have other assistance programs. Check it out at www.Humira.com.
 
DougUte said:
Hi Kavya.

I have been on Humira for over 4.5 years. I am on the Humira co-pay assistance plan, or I would not have been able to afford it. I pay $5.00 a month for Humira. That I can afford. If you have insurance the co-pay assistance plan will help with what insurance doesn't cover. If you are uninsured they have other assistance programs. Check it out at www.Humira.com.
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My husband has good job? But insurance not that great!we already have so much billls piled up? Do u havd good job? Inspite they provided assistance program pls guide?
 
The Humira co-pay assistance will pay a very large portion of what your insurance does not. I have always only paid $5, even with a high deductible insurance plan. And it even helped me to meet my deductible, as that is seen by your insurance as an out of pocket expense.
 
Assistance program is regardless of income ( unless you have govt funded insurance - Medicaid in US )
Otherwise it covers most of your copay
Some only pay $5
Some pay more depending on what your portion of the bill is
Good luck
Ds has used it for 3+ years
 
Just posting to join the group. I've been taking 40mg of Humira every other week since August of 2014 with moderate success when also used with Imuran. When I went off Imuran for a while, I flared back up. Thankfully, the combination seems to work for me. In regards to cost, I also only pay the $5 copay through the Humira assistance program. I'm not sure how they're able to work that out for most people, but it's a godsend.
 
My insurance is from my employer so not sure how much we need to pay from our pocket for medicine,lets see we just submitted forms to humira now they need to check and get back to us

Hope for Best

regards
Kavya
 
I have not officially been told yet to start Humira. I also have psorasis. I had read that Humira can help with psorasis. Are there any of you who have psorasis who have been helped from the Humira?
 
ronroush7 said:
I have not officially been told yet to start Humira. I also have psorasis. I had read that Humira can help with psorasis. Are there any of you who have psorasis who have been helped from the Humira?
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Hi Ron. I have a very small case of psoriasis. One small patch on my right leg. When I showed it to my G.I. he told me it was psoriasis and said, you are already on major therapy for that with the Humira, LOL. Humira is prescribed for medium to severe cases of psoriasis.
 
Humira can help with psoraiss but typically Mtx is added to humira or remicade etc...
To fix psoarisus that starts after being in a biologic
 
I am to start Humira in the near future. I have some mild cerebral palsy. I don't have the best coordination. When I have had the other biologics, they have had nurses come out to give the shots. Is there anyone else here who has had coordination problems who had been able to successfully give themselves the shot? Thanks.
 
Your best bet may be the pen. It's pre-loaded and all you do is pull off the caps on both ends, hold it to the site you're injecting and push a button. I could not do the injections, but did well with the pens.
 
4 years and 6 months on Humira.

3 of those years at 1 injection a week as opposed to 1 every 2 weeks. Past few months though I've been going through a "mini" flare of sorts. Or maybe I'm just less tolerant of certain foods, I'll find out when I get my colonoscopy reports.

Still have an appetite and energy, I just get surprise poop attacks every now and again.

One thing my doctor did say after the procedure was that she didn't see any fistulas so I guess Humira is def working for that, even after nearly 5 years!
 
IAmTheWalrus said:
4 years and 6 months on Humira.

3 of those years at 1 injection a week as opposed to 1 every 2 weeks. Past few months though I've been going through a "mini" flare of sorts. Or maybe I'm just less tolerant of certain foods, I'll find out when I get my colonoscopy reports.

Still have an appetite and energy, I just get surprise poop attacks every now and again.

One thing my doctor did say after the procedure was that she didn't see any fistulas so I guess Humira is def working for that, even after nearly 5 years!
Click to expand...
That is great.
 
I don't know how much longer I can subject myself to this dreaded button push. I've tried drowning it out with noise canceling headphones...but now it hurts as soon as I push the button. Every time I do the injection it takes me longer and longer to push the button. Even tried drowning my sorrows in a nice stiff drink first. Idk how much longer I can do this.
 
LCATC945 said:
I don't know how much longer I can subject myself to this dreaded button push. I've tried drowning it out with noise canceling headphones...but now it hurts as soon as I push the button. Every time I do the injection it takes me longer and longer to push the button. Even tried drowning my sorrows in a nice stiff drink first. Idk how much longer I can do this.
Click to expand...
Can you switch to a syringe?
 
LCATC945 said:
I don't know how much longer I can subject myself to this dreaded button push. I've tried drowning it out with noise canceling headphones...but now it hurts as soon as I push the button. Every time I do the injection it takes me longer and longer to push the button. Even tried drowning my sorrows in a nice stiff drink first. Idk how much longer I can do this.
Click to expand...

You can request pre-filled syringes... Thats what I use and it's wayyyyyy better. Little bit of a sting as you inject but you can take your time, doesn't hurt to make the poke, and zero obnoxious button noise that makes you shake and scream in surprise every damn time. Oh wait that's me.. I hate the auto-injector pen. Did it twice after the first one scared me so bad I screamed, jumped, then because of the shock of the sudden jab I didn't hold it down so the Humira just ran out of the pen and all down my leg. I actually cried lol it was terrible. The next one I did in my thigh while sitting and it took me a full 10 minutes to get enough courage to press the button. It still scared me but at least I was sitting so couldn't move from the sudden piercing jab. I seriously felt traumatized from it. Lol never again!
Anyhow...so yah, I'd just request the pre-filled syringes ;-)
 
I don't know how much longer I can subject myself to this dreaded button push. I've tried drowning it out with noise canceling headphones...but now it hurts as soon as I push the button. Every time I do the injection it takes me longer and longer to push the button. Even tried drowning my sorrows in a nice stiff drink first. Idk how much longer I can do this.
Click to expand...

LCATC945: I know that feeling all too well. Here's what I do now because I dread it, too. And the dumb thing is it doesn't last but 10 seconds. There's something about the anticipation of it. So here's what I do. I act like I've forgotten it. So I run quickly to get it out of the cabinet where I've left it to get to room temperature, run in the bedroom and lie on the bed, pull up my shirt and t-shirt really fast, rub the alcohol on my belly and put the pen on really fast and push the button. Bam. No thinking about it. It has helped me because it seems to lessen the time to think about all that goes with it. I remember one time I got so nervous over the noise and anticipation that it shot out sideways and I kept trying to stick it in. LMAO. It was a mess. I told the company it misfired! What else could I do??? Good luck man. I'm with you 100%. Now I'm doing it every week, so I do a lot of "forgetting!"
 
Syringe syringe syringe
That s what we use for Ds
He has an epi pen for food allergies and anaphylaxis so no way were we using an autoinjector
They even change the design of the epi pen a few years ago because of the dread click that caused people to jump
Now it's a jab motion no click or button

Syringe is so much better
To avoid pain have someone ask you questions you need to think of the answers for
This stops the pain signals
 
ronroush7 said:
I have not officially been told yet to start Humira. I also have psorasis. I had read that Humira can help with psorasis. Are there any of you who have psorasis who have been helped from the Humira?
Click to expand...
hey,Ronroush,,Humira cleared my skin and my nails 100%..it does absolutely nothing for my stomach pains
 
Humira 40mg pen every other week with 4 methotrexate 2.5 pills every week will clear your psoriasis of the skin and nails..It worked for me for the last 3 years..My Crohn's was in me for a very long time.What brought it out was straining 3 hemorrhoids out,that's what started my ordeal..
 
EastCoast902 said:
Started mine Monday- 4 belly shots once a week for 4 weeks, then 1 once a week (or 2- can't keep it straight). Haven't had a pain since. Is it all in my head!! Hopefully not.
Click to expand...

This is for Humira? Normally the loading doses for Crohn's is 4 shots at one time, 2 weeks later 2 shots. Then it is 1 shot every 2 weeks for maintenance doses. If that doesn't work, then they may add a med or go to weekly injections.
 
DougUte said:
This is for Humira? Normally the loading doses for Crohn's is 4 shots at one time, 2 weeks later 2 shots. Then it is 1 shot every 2 weeks for maintenance doses. If that doesn't work, then they may add a med or go to weekly injections.
Click to expand...
It is the same for me.
 
I will, but I have nothing to compare it to, just diagnosed in Nov. Entocort since Dec, which isn't doing much. This is my 1st time on Humira. My GI recommended the high loading trial because "I need it"....I need life to get back to some kind of normal.
 
EastCoast902 said:
Started mine Monday- 4 belly shots once a week for 4 weeks, then 1 once a week (or 2- can't keep it straight). Haven't had a pain since. Is it all in my head!! Hopefully not.
Click to expand...

I felt great for the 1st month too, almost immediately so I don't think it's all in your head!
Sadly it went down hill from there and a year and 30cm's of inflammation later, I've changed to weekly shots around 8 weeks ago which is starting to do something I think.
My levels were tested and they were low so I really hope this will do it as I don't have any side effects so would like to stay on Humira rather than change to something else.
Sadly public health here doesn't cover weekly shots so I'm getting the additional Humira on compassionate grounds from Abbvie. :dance: However they only do this for 3 months so there's a fair chance that things will return to the bad old days once I'm back on fortnightly shots...:stinks:

I saw you are on a high loading dose regime, I've never heard of that before but it makes sense, it might have made all the difference for me. Hope you will remain pain free forever and that this regime is right for you!
 
Had my 2nd set of 4 belly shots yesterday, not as bad as the first set. 2 more weeks of 4 shots, then down to 1 a week. I might be able to do this! Hopefully the humira will work. The week was not bad, about 50%. And I ate a salad!!!:biggrin:
 
How long does it take for the Humira to work? I have had both my loading doses(four shots the first time and two sbots last Wednesday). I have had diarrhea lsst night and this morning.
 
ronroush7 said:
How long does it take for the Humira to work? I have had both my loading doses(four shots the first time and two sbots last Wednesday). I have had diarrhea lsst night and this morning.
Click to expand...

They told me to give it 6 weeks. Although my pain has somewhat lessened, I still have diarrhea, which I don't mind (6x yesterday and 2x today). The back ache and cramping is the most bothersome.
 
New Humira prescriptee here! Was going to start right away on combination therapy 6mp + Humira but came down with a case of Shingles....ugh. Luckily not at all painful, a mild case. But it has to be gone before starting the combo. Will be starting Mon after next. A little worried and reading up on all the potential side effects.
 
aypues said:
New Humira prescriptee here! Was going to start right away on combination therapy 6mp + Humira but came down with a case of Shingles....ugh. Luckily not at all painful, a mild case. But it has to be gone before starting the combo. Will be starting Mon after next. A little worried and reading up on all the potential side effects.
Click to expand...
Hope you get the shingles cleared up soon and get started on Humira .
 
ronroush7 said:
How long does it take for the Humira to work? I have had both my loading doses(four shots the first time and two sbots last Wednesday). I have had diarrhea lsst night and this morning.
Click to expand...

Hope it starts working soon for you Ron .
 
aypues said:
New Humira prescriptee here! Was going to start right away on combination therapy 6mp + Humira but came down with a case of Shingles....ugh. Luckily not at all painful, a mild case. But it has to be gone before starting the combo. Will be starting Mon after next. A little worried and reading up on all the potential side effects.
Click to expand...

Best of luck aypues with the humira when you start it , im on it 10 months and no side effects , hope the shingles clear up quickly .
 
Hello all , Crohn's for nearly 20 years. I've been on Humira for just over four months and finally started to see some benefits. To begin with I had lots of diarrheah and headaches and a unusually high fever twice. Now in the last two weeks less Loo visits , no joint pain no back ache and full of energy. I've read that it can take up to 6 months . I've kept the faith. Give the drug a chance and be positive😀.
 
Toora said:
Hello all , Crohn's for nearly 20 years. I've been on Humira for just over four months and finally started to see some benefits. To begin with I had lots of diarrheah and headaches and a unusually high fever twice. Now in the last two weeks less Loo visits , no joint pain no back ache and full of energy. I've read that it can take up to 6 months . I've kept the faith. Give the drug a chance and be positive😀.
Click to expand...
That is great
 
Had my 3 round of 4 shots today, 2 normal bathroom trips and no pain for 36 hours!! Woot Woot!! One more week of 4 shots then I go to 1 shot every 2 weeks. I have to ween off (from 6mgs to 3, then none) the entocort in 2 weeks as well. :ybiggrin: Still watching my diet closely and have decided red meat is a trigger.
 
Hi everyone 😊
Hope your all well.
Thought I would join this group as I've recently started humira. I had my first 4 injections two weeks ago. I did them in my legs and they bruised horribly and I was suffering with a lot of muscle and joint pain. I had my next dose, 2 injections today which I decided to do in my stomach. I think they initially felt less painful but an hour later and my stomach was in agony and still is several hours later. It's like a burning throbbing pain. Anyone find a least painful place to do it? Any other side affects?
 
Well it was bound to happen sometime. I have been in remission since 2012. The last couple of weeks I have had problems. I am having several bathroom trips a day, with diarrhea. Sometime explosive diarrhea. Sharp abdominal pains, and yesterday green poop. Using the patient portal for my G.I. Clinic, I contacted them and was advised to get in ASAP. I have an appointment with my GI's physician's assistant on Thursday this week. (I would have had to wait until May 30th to see the GI himself.) Seems Humira is failing me now.
 
Abbynormal said:
Hi everyone 😊
Hope your all well.
Thought I would join this group as I've recently started humira. I had my first 4 injections two weeks ago. I did them in my legs and they bruised horribly and I was suffering with a lot of muscle and joint pain. I had my next dose, 2 injections today which I decided to do in my stomach. I think they initially felt less painful but an hour later and my stomach was in agony and still is several hours later. It's like a burning throbbing pain. Anyone find a least painful place to do it? Any other side affects?
Click to expand...

I have 4 at a time as low on the belly as they can get. Out of 12 shots so far, one has bruised and one from yesterday is driving me nuts it is so itchy, other than that no problems at all. Mine are syringes, not the pen.
 
DougUte said:
Well it was bound to happen sometime. I have been in remission since 2012. The last couple of weeks I have had problems. I am having several bathroom trips a day, with diarrhea. Sometime explosive diarrhea. Sharp abdominal pains, and yesterday green poop. Using the patient portal for my G.I. Clinic, I contacted them and was advised to get in ASAP. I have an appointment with my GI's physician's assistant on Thursday this week. (I would have had to wait until May 30th to see the GI himself.) Seems Humira is failing me now.
Click to expand...
I am sorry, Doug. I hope they are able to help you.
 
I just took my loading dose of Humira on Friday. I slept through most of the weekend. I did three injections in one leg and it seemed like the closer I got to the top of my leg, the more painful it was. I put the last one in my other leg. I was also due for my B12 injection so I was feeling like a pin cushion.

I am hoping that the fatigue eases up and am SO happy that next time there will only be two.
 
Had the last of my 4 loading doses today. That makes 16 in all. In 2 weeks I start 1 every two weeks. I cannot inject myself, so have made arrangements with a local nurse to do them. I am sure eventually I will be able to inject, but because this is a clinical trial, the humira only comes in syringes. I have had no pain in the past week, and ate everything in sight including salad, corn, beets, steak etc..... Gained back 2 lbs of the 30 I lost since this all started in Sept.

Energy level is blah, but so is the weather, only side effect if you want to call it that (so far) is itchy injection sites.

I know from reading this site, that this bubble will most likely burst, but right now I'll take it!!
 
ronroush7 said:
I am sorry, Doug. I hope they are able to help you.
Click to expand...

They have put me on budesonide for this flare. So far no changes to the Humira. The PA thinks the flare would be worse if it was not for the Humira. Will see how well the budesonide helps.
 
I just had my loading dose of 4 shots today with my doctor. The first one was in my left upper thigh and was very painful; he was pressing down pretty hard and it really hurt. After that we switched to the other leg which I did, and it didn't really hurt much. Then we went up to the abdomen and that wasn't so bad either. Afterwards i do feel some generalized pain in my lower abdomen and upper legs but it isnt bad. No bruising so far either.
 
Hi everybody. Just joined group. Wondering if anyone can relate to what I think are Humira withdrawal symptoms. My 17 yr old son had partial small bowel resection one month ago, so he has been temporarily off his Humira weekly injection for about one month. Healing nicely from surgery, but just a few days ago he started having terrible nausea, agitation, headache, weakness. No pain, no issues with pooping. To me symptoms seem like those he'd get when he was taking the medicine every two weeks and was ready for a shot. Those symptoms went away when he switched to weekly shots. Doctors always say it is breakthrough disease, and never discuss the issue of Humira withdrawal symptoms, but that is what I am witnessing. Anyone else have this experience on Humira? He's supposed to wait a few more weeks to begin taking it again.
 
That would cause withdrawal symptoms? Problem is from what I recall, they can't test for Humira antibodies yet in blood.
 
Is there a group on here where I can post results from a cat scan and see what options others have regarding? Thanks for any info.
 
I've been on Humira for 3 1/2 years and i've always thought the pen injections were much less painful in the stomach. Somebody suggested holding an ice cube on the spot you're using for a minute or so beforehand. That does help a bit, but I always forget.
 
I did my Humira today. The last two times I have done it on my left side and I don't experience as much pain. Also, I seem to notice more of a positive difference on the psoriasis but not so much with the Crohns yet
 
Humira seems to stop catastrophic trouble with me, but if I'm foolish I still have loose bowels. Ice cream, milk, now sometimes coffee and cola bother me, so Im getting more careful.
 
I'm bowing out of the Humira club after 4 years and 8 months! My most recent scope did show some inflammation in the colon, so they want to start me on Remicade this Friday.

Not sure why, I assumed both drugs were the same so if Humira has "stopped working" then surely the Remicade will be useless.

Either way. I'll miss this thread! :(

(Even though I rarely post :lol2: )
 
What other medication are u all on?
I take humira and azathioprine. I was given the option to stop my pentasa but I don't know whether too or not. Would it still be beneficial to take?
 
Abbynormal said:
What other medication are u all on?
I take humira and azathioprine. I was given the option to stop my pentasa but I don't know whether too or not. Would it still be beneficial to take?
Click to expand...
This is just me personally. My doctor switched me from pentasa to lialda. Besides pentasa , lialda and humira, I am on imuran , colestipol , VitronC and a probiotic.
 
I haven't been feeling so well lately and my dr wants to measure drug levels before the next injection. What would that show?
 
tlattin said:
I haven't been feeling so well lately and my dr wants to measure drug levels before the next injection. What would that show?
Click to expand...

My doc has me taking blood test every three months to check whether I'm developing ant-bodies against Humira.I thought it was a requirement for everybody.
 
I don't know, I was originally put on pentasa when first diagnosed but then when I got a fistula I was put on azathioprine and then as the disease has gotten worse I was boosted up to humira and told I can stop the pentasa if I wanted to but still take the azathioprine and have 3 monthly b12 injections
 

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