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Humira Club Support Group

my little penguin

Moderator
Staff member
Why no bloodwork ??
We have done bloodwork more than once with colds
But his esr and crp are always normal except with major need to be admitted infections
Colds don't tend to have fevers
Hmmm
 
We did not do blood work because I was afraid the results will be affected by his cold.
He hates blood work 1000x more then Humira injection ,and I did not want to take a risk we will have to repeat it.

After the visit.
It's too soon to stop the Humira. In 3 mos , if still no symptoms, we'll discuss options.
My son said he's happy he can continue the shots because they don;t hurt and he gets to get a reward. Crazy child. :)
 

my little penguin

Moderator
Staff member
If you stop humira then it may not work in the future
Your body produces antibodies when it's stopped
It does not typically cause anaphylaxis when restarted like remicade but
It does not work as well or at all
If he has jAS or JSpA that doesn't go away and is an aggressive disease
Meds are for life
Not sure on why you would stop once your in remission
Please get a second opinion before stopping
 

Maya142

Moderator
Staff member
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.
 
When I began Humira, I was desperately ill and thought I'd fade away if I had to wait 3 months before I saw improvement. After my loading doses, I came home, sat on my sofa and waited for hours for it to work. lol Like it would.

The next day, I went to WalMart to pick up a few things, and I felt like I had forgotten something. Something was not right, but I couldn't figure it out. I even looked to see if I had put on all of my clothes. :)

Then I realized what it was. I had NO pain. The pain was missing. Humira worked that quickly for me. Less than 24 hours. Funny thing....3 of us started Humira at the same time, and all 3 went to WalMart within 24 hours of the loading doses, and all 3 of us saw major improvement inside of that time period.

So, maybe the key is...after the loading doses....go to WalMart the next day. lol
 
So, maybe the key is...after the loading doses....go to WalMart the next day. lol
Hahaha dually noted. I'm waiting for my loading dose....I opted for a nurse to come administer it and I also opted for the syringe rather than pen because o prefer to control the rate of flow. Presently on weekly 25mg MTX to continue along with the soon to begin biweekly Humira. Not really nervous...this is my third kick at finding something to bring me out if this flare. At this point whatever could work, I'm willing to try. ;-)
 
Well, good luck to you! Humira was my best friend.
Thanks...I'm hoping so too! :)

I have a question for anyone doing both mtx and Humira. Do you inject both on the same day? I just did my mtx injection but not sure when I'll be starting the Humira...I presume within the next few days. Wondering if it matters medically or if it's just rather more convenient.
 

my little penguin

Moderator
Staff member
When Ds started oral Mtx and humira
We were told different days just in case you had a bad reaction to one you would know which drug it was and not have to stop both

Good luck
 
Good point. Well I get my loading dose of humira tomorrow midday....MTX injection isn't until tomorrow evening so I'm thinking I'll just ask the nurse when I'm getting my Humira. ;-)
 
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.
 
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.
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.
 

my little penguin

Moderator
Staff member
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.
 
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.
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 !
 
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
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?
 
How much did you pay for Humira?
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.
 
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.
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.
 

my little penguin

Moderator
Staff member
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?
 
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?
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.
 

my little penguin

Moderator
Staff member
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!
 
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!
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.
 
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.
Can you switch to a syringe?
 
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.
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.
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!"
 

my little penguin

Moderator
Staff member
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
 
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?
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..
 
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.
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.
 
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.
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.
 
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.
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.
 
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.
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.
 
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.
Hope you get the shingles cleared up soon and get started on Humira .
 
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.
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😀.
 
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😀.
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.
 
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?
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.
 
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.
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!!
 
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.
 
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