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Crohn's Disease Forum

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Mousesjca
Look at sterlera it works differently
Hope the MRI is clean
DS had one when he reacted to remicade but his was an allergic reaction no evidence of any issues on the MRI .
 
If it helps anyone feel better I didn't think I'd ever get back to normal. I can eat what I want and now I ride motorcycles. I lost 40lbs during my last flare. Now I've gained it back. I just hope that while I ween off prednisone that the humira can keep me healthy
 
They may just use 6 months as a go forward point.
The point where they determine if the med is working .
Even for JSpA it's not recommended to stop.
 
I am on Humira and still have joint pain. I was wonder how others have got relief from it. I also
have Eosinophilic esophagitis, which is flaring right now. I think I am going to do the 6 food elimination diet to see if I can figure out if it is a food allergy. Anyone else have Eosinophilic esophagitis along with Crohns?
 
Who all is one weekly Humira? I'm almost sure that's what my new GI is going to suggest after my 8/22 MRE which will be 3 months after starting Humira. I hope she gives it another couple of months!
 
Nancy,

GI started me on Humira 2 times per month. +60 mg of Prednisone (I taper out next week), +100mg per day of AZA. 6 weeks into Humira injections, GI increased Humira to 1 time per week.

I am 63 years old so increasing Humira to once a week was a nobrainer for me. Had I been a much younger man I would have thought seriously before going on 1 time a week. T-cell lymphoma is increased in young people.

I find all of this combo of drugs slightly amusing. GI goal is to build a bridge from the Prednisone to the bridge to the AZA with Humira riding herd over them all. Back in my early days of Crohns, Prednisone in heavy doses was the only treatment.

The SCD diet is now back on my radar and I have started the program 3 weeks ago. Anecdotal evidence says that a change in diet can possibly help.
There is a diet forum here that you should join and see if it is for you.

I have had CD for 42 years and now suffer short bowel because of it.

My suggestion to you and all young people here who would like some control over this illness is to take hold of your own treatment. You are the one suffering and only you with active participation in your care can gain some degree of management over your body.

I often wonder why this disease picks it's targets like it does. It changes you and me physically, psychologically, and spiritually .

This ugly disease will be defeated in my lifetime if I live another 10 years. Keep the faith my brothers and sisters, "The Lone Ranger will ride again".

Happy Friday to you all.


Miles
 
After a recent colonoscopy and uveitis my GI doc is recommending that I start humira! I'm newly diagnosed with Crohn's disease but have had it for years! 3 bowel resections and several small bowel obstructions later they've finally given me a diagnosis! This is really the first med that I've been prescribed for Crohn's disease. Has anyone else started treatment with a biologic???

How's everyone today??
 
I started with pentasa, then Imuran, then humira bi weekly, now humira weekly with Imuran.
I'm doing ok today. Went or a nice massage, I wish I could go more often!
 
Lam123 have you had any bad side effects from the humira as of yet! Everything I read scares me to death!!!:lol:
 
I got into a flare and it was either stay on high doses of prednisone or go to weekly, so I chose weekly. I didn't want to stay on high doses of steroids for a long time. My crohns and knees wouldn't calm down.
 
No side effects at all. The first few doses made me feel yucky the next day, but that went away. Humira has allowed me to enjoy special time with my family and enjoy life.
 
It scared me too at first, I was very hesitant. But the small increase risk of cancer, versus stayin very ill from crohns and missing out on life with my son and family. I chose life.
 
Lam123 said:
No side effects at all. The first few doses made me feel yucky the next day, but that went away. Humira has allowed me to enjoy special time with my family and enjoy life.
Click to expand...

I started Humira today biweekly mainly for spinal pain. :( I really hate arthritis and wish it would just disappear. Such a burden.
 
Fingers crossed for you!
You have to be patient though, it took about 4-6 months to really put me in remission
 
I'm really hungry ever since I took my shots. I can't stop eating which is a good thing since I'm underweight. Haven't had an appetite like this in a while.
 
Hi there. I was diagnosed with Crohns over 20 yrs ago, and while I suffered badly in my 20's, I have not had any symptoms for over 10 yrs. In a way I was lucky because I was allergic to the common drugs for treatment, such as Imuran. So I had to find an alternative solution, and did so with changes to diet, lifestlye and some vitamins and supplements.

I went for a colonscopy recently and the doctor says there is some activity there again, but nothing too serious. As i said, I still do not have symptoms. But my doctor recommends Humira as a preventative measure.

I am scared by all I have read about the drug, including risks of infections and even lymphoma in some cases. Also the fact that I had a life threatening reaction to Imuran, I would worry that I would have the same reaction to Humira.

Any thoughts on it. Is it worth the risk?
 
its good to hear there is hope for us. I am newly diagnosed in my 20's with severe crohns. even though i have only been on humira for a couple months I am a die-hard believer. I have had no side effects and my symptoms are starting to subside. the humira pamphlet scared me pretty good tho
 
I'm on Humira, about two years. Migraines might be a side effect, but they might be occurring for a different reason, I really have no idea. Infections hit me harder and a little more often, but it's not terrible. I have found it to be quite necessary in my case--severe Crohn's, didn't respond to much while in the hospital.

As a preventive thing, though, with no symptoms...I think I'd try other options first. The injections aren't fun, but I got used to them pretty fast. Prevention is good, but I think it's worth exploring something that doesn't require injections and that has fewer side effects. It sounds like you've done well for a while, so my feeling is that it isn't time for the strong stuff yet.

If it gets worse later, by all means try Humira. Yes, there are some nasty things that can happen, but they are extremely rare. Humira has allowed me to live a relatively normal life. (Remicade saved my colon, I switched to Humira because the Remicade wore off too quickly, but I imagine Humira would've done the trick, too.)
 
My kiddo is severely allergic to most things ( food drugs pollens etc.. carries an epipen)
But even though he had two allergic reactions to remicade ( second rxn while on iv steriods)
He has not had any issues with humira.
It is humanized protein so less antibodies than remicade which has murine protein ( mouse).
Right now just trying to figure out a plan to fix the arthritis side of things .
 
Has anyone used Humira for a couple months, had it do nothing.....and then suddenly it starts working? I've been taking Humira for about 11 weeks now and I feel worse than before i started. My doc increased the dose to weekly instead of biweekly, and he wants me to stick with it for another month to see if it kicks in. I feel like this drug does nothing for me, but was wondering if anyone has had the experience of having Humira suddenly kick in after more than 3 months. I mean, i don't even feel a little bit better than before.
 
Took my loading dose today. Wow, those pens are not fun.

I really hope this medication isn't going to take forever to show an effect.
 
Well, I had to go through their assistance program to get the medication, and the pens are what they sent me. Even if there's an option to get syringes next time, I've got another couple months' worth of pens to use up. So I might as well just get used to it.
 
I have my Humira in the fridge waiting on me. I have UC & have for about 25 years. Have tried many different meds. Im soo nervous to start this med from reading all the negative comments on other sites about side effects. Can anyone post if they have had success with this med with UC and the common side effects you have experienced?
 
tamRN,

I too had the meds in my fridge waiting on me, and 9 days ago I started my induction (4 injections). The only side effect to date, I was tired within two hours after my injections. Within a few hours, I was feeling fine. I have switched from Remicade to Humira because I began building an antibody to the Remicade and even after my doctor began doubling my dose every 4 weeks - the Remicade did not last for more than 2 weeks. Thus, my change to Humira…. so far, I am feeling good - zero joint pain, etc.

Have you tried Remicade or another TNF blocker? If so, the Humira may be very beneficial because it is made using a Human Protien and not a mouse protein (Remicade).

Hang in there - Humira may be the ticket!
 
Thank u for the reply!
No, I havent tried remicade. Im currently on sulfasalazine, uceris, folic acid & canasa supp. Just came off another taper dose of prednisone which helps while im on it but flare starts within 2 weeks of coming off. The MD wanted me to try Humira before I went on the last dose of prednisone but I was too scared. Seems like its just a revolving cycle for me. One of my biggest complaints is pelvis and leg pain/aches & fatigue on top of going to the bathroom all the time. I have researched soo much on Humira and just cant bring myself to take it. Ugh! Although I want soo much to feel well.

Im thinking hard. I work 12 hour shifts. If i do decide to start it do u suggest starting when Im off a couple days after?

Thanks again!
 
Maybe the first time you take it you should do it on a day off just in case. I never have any ill effects the day I take my shot. I do like to lie down for about 10 min after taking the shot, just until any tenseness goes away
 
tamRN,

We have both had our illnesses for a very long time. I too started with Sulfasalazine; when first diagnosed in 1993, however, I soon learned I was alergic to sulfa based drugs. I too have taken Prednisone, however, I put on the brakes with that drug because of the outrageous side effects.

Decades ago, when you and I were both diagnosed, doctors primarily believed that a conserative approach should be taken in treating our illnesses. In short, saving the "big guns" (TNF Blockers, etc.) for the future so as our disease progressed there were tools availible in the toolbox. Based on new studies, that medical approach has changed and getting a handle on the disease quickly - shortens flares creating longer remission and most importantly providing quality of life.

Like you, I too had similar concerns, however, one day comes when the pain and suffering is far too great. The years of saying, I can handle the fetal position a few times a year and get through the day to day severe issues comes to a screaching halt. For me, my transient joint pain, one of the side effects from CD, was far more painful than anything else I was experiencing. Thus, I made the difficult decison to begin Remicade treatments. To say I was stunned by the immediate turn around / pain relief would be an understatement. In other words, I was Blessed! No symptoms, no pain just….quality of life.

In my case, my body began building up antibodies to the Remicade and my infusions beacame shorter in duration and ultimately the dose was doubled. I began my Humira induction approximately 9 days ago and have been feeling excellent.

As previously stated in my earlier post, after my 4 injections (first dose of induction), I became tired after 2 hours and about 5 hours later after the injections, I was perfectly fine and up and running.

In closing, I too work long shifts of 12-14 hr days (a few days per week) and will now do my injections when I have a day off.

The decision in how to proceed in fighting back your illness, aggressively or not, is a tough one and one only you can make. However, for me, I was ready after decades of an unsuccessful cautious approach.

Hang in there because better days are coming your way - you are not alone!
 
Any long-term Humira users have any issues with cysts around the face and neck area? I recently had a bump on my temple removed. The bump had been there for some time with no issues; however, it suddenly became inflamed and had to be removed. Three months ago, I had a painful cyst like thing under my chin. It started with what looked like a pimple on my neck and then grew underneath my skin and became very painful. Even with warm compresses, it never opened up and drained. I had to go on antibiotics to get it to go away. Now it's back again and my GI wants me to see an ENT. I've several red bumps on my face that look like acne only it never develops a head or drains like acne... just painful little bumps about the size of acne. I swear this is from the Humira (I've been on it 4.5 yrs now) and wonder if anyone else has had this issue. I also have sinus (sinus surgery last year) and ear issues. My ears feel like they are full all the time... like I'm on an airplane. The sinus surgery did not correct this problem. I can move my jaw and pop my ears and hear normally for a very short period of time before my ears "fill up" again. The ENT can find nothing wrong.
 
Agent99,

I have had red bumps since starting the Humira, they started on my back, chest, and shoulders. While my chest has improved, my back remains the same, I am now getting them all over my legs. I have brought it to my GI's attention twice and she said it has nothing to do with Crohn's or Humira. I finally made an appointment with my regualr doctor and see her today about them.

They do not get huge or need to be removed, but they never go away and I feel like they are spreading.

I had not wanted to say anything since I had not seen where anyone on here had experienced it. I will let you know what I get told today. I am next to positive this is a reaction to the Humira, but I'm not sure any doctor will say that.
 
Thanks Tinanette! I really get upset when doctors say it has nothing to do with the Humira. How do they know with certainty?!
 
My doctor is currently clueless. She stuck a needle in one and is going to have it tested. Could be a bacterial infection of some kind due to the immune supresser in Humira, could not be. I will get results in a week, she did not want to put me on medication of any kind with me having Crohn's until she knows for sure what it is.

The year it took for me to get diagnosed, I feel like I live at a doctors office. Hopefully will get answers in a week.
 
Ever since I started Humira Ive been having some crazy dreams. I'm still recovering from the one I just woke up from. I had a Jurassic park roller coaster on my front lawn with scary dinosaurs everywhere. What the hell???
 
Same. Hanging in there. Done prednisone now. My knees aren't bad, but not 100% either. I go see GI beginning of Oct. Do u know how long it takes for your body to adjust to not taking prednisone?
 
I hope you feel better. :( I'm not sure how long it takes. I never noticed my body struggling to adjust. I tapered too fast once and got fever but last time I tapered 5mg a week n my body did well.
 
I also have had red bumps all over, which I ought was related to the Humira. Of course my doctor said that's impossible and sent me to a dermatologist who gave me steroid cream and a shampoo to try and get rid of them.
Has anyone else had joint pain with Humira? I've been in a lot of pain, and I'll feel very stiff when I try and stand up or get out of bed in the morning. My knees are swollen and now my doc is sending me to a rheumatologist :sign0085:
Never had joint problems before this...
 
Has the cream and shampoo helped you? I will find out tomorrow from my doctor what the next step is.

I have not had joint pain, but I have read where others have.
 
Of course. So they are calling it an allergy, but not to humira? I hope your get your joint pain gets figured out. I thought Humira was also given for arthritis as well as Crohn's.
 
Joint aches and little red bumps are also associated with Crohn's. I forget the precise details, but I've read about it before.
 
About a year ago I started having severe joint pain after being on Humira for about 7 months. I am 52 and would get out of bed like a crippled "old person". If I drove my car for over 1/2 hour I could barely get out of the car. I also was sent to a rheum., he did some blood work and my c relative protien was very high. He upped my dosage of humira and that seemed to help. Now I only have joint pain off and on. I have found that working out at the gym helps. I just baby my knees. Good luck!
 
I got my results from all of my red bumps and I have a staph infection. My mom was sick and in the hospital for three months, my doctor says with my low immune system I more than likely picked it up there. I have contacted my GI to find out if I continue my shot of Humira and if it is ok to start the penicillin. Hoping for an answer from her quickly...yeah right.
 
Hi guys, I would love to join this group. I am starting Humira in two weeks, and was wondering what infections people have battled since starting this medication? Did anything underlying get out of control for anyone? Thanks for any responses!
 
My daughter didn't have any negative affects on Humira except for fatigue & headaches. They were manageable. We scheduled Humira before bed and it seemed to help. No additional illnesses, a couple of colds last year but no biggie. Hope it goes well for you!
 
SupportiveMom said:
My daughter didn't have any negative affects on Humira except for fatigue & headaches. They were manageable. We scheduled Humira before bed and it seemed to help. No additional illnesses, a couple of colds last year but no biggie. Hope it goes well for you!
Click to expand...


Thank you :)
 
Oops, I just injected a months worth of humira in one sitting (80mg). I forgot its not the initial loading dose anymore! Ugh! Well hope it helps me...

Update: guts are rumbling like mad. I'm worried.....
 
Last edited:
Titanette.. That stinks. Didn't know staph infection means off humira
Jaja I wonder what this will mean for your next dosage? Hopefully they can get you a replacement for the one in2 weeks? I hope your stomach calms down.
 
My guts are still really loud and I just woke up. I've been sleeping since last night 11pm! Never felt this sleepy in my life. I'm guessing my next one won't be until October now. Thanks for writing me. <3
 
My stomach is rumbling really loud after starting Humira. No pain so it doesn't bother me that much. I had (or still have) staph infection on skin before starting but it has stayed in control. In fact it has been getting better after starting humira. No need for antibiotic creams or local cortisone creams.
 
hi all! im back after a long absence! since 4 years my therapy ih humira and now i stay well!!humira is perfect for me! but unfortunately in recent months there have been a new problem: kidney stones!
but the situation is still much better than a few years ago
 
Hi everyone,
I was just officially Dx with Crohn's today and my doctor and I decided that my treatment plan will be Entocort for 6-8 weeks then taper off and also Humira, which I should be starting in about a week or so. I think we are doing Humira right off the bat primarily because of the extent and severity of disease (it's all along my upper GI tract, small bowel, and distal colon). Apparently I'll be scheduling surgery sooner or later if we don't do some sort of intense treatment, so we decided Humira would be the best choice for me right now. No surgery for me, thank you very much! :)

I'm glad this group exists for me to join. It's a great resource.
I'm going to read up on Humira now!
 
I wish you the best of luck!!!!! i was in the same boat as you in june/july. im still trying to get the flare under control. the humira might not be working for me, ill know next week. ive learned to measure progress by monthly, its hard not to get discouraged
 
I think it's safe to say Humira has kicked in for me. Today is injection day and I haven't even done it. Quite the contrast from counting down the hours like I have the last few months!
 
Hi everyone,

Seeking some support today. Humira is doing the opposite of what I hoped it would do for me. My condition has worsened since my last dose. I now have explosive diarrhea, urgency, high fevers, severe abdominal pain, wheezing in my chest. I know this has nothing to do with the two pens I injected bc I called Humira and they said it takes a lot of Humira to overdose according to their trials.
 
Ja ja, how are you today? Any better? Could you have the flu or something unrelated to Humira? Crossing my fingers you bounce back quickly.
 
SupportiveMom said:
Ja ja, how are you today? Any better? Could you have the flu or something unrelated to Humira? Crossing my fingers you bounce back quickly.
Click to expand...

Thank you. :( I'm not doing well. Went to the doctor today and having my stool checked. Humira exasperated some preexisting condition. Question is which one. The symptoms like explosive diarrhea/pain are not typical for me.....check back soon.
 
Juuh said:
My stomach is rumbling really loud after starting Humira. No pain so it doesn't bother me that much. I had (or still have) staph infection on skin before starting but it has stayed in control. In fact it has been getting better after starting humira. No need for antibiotic creams or local cortisone creams.
Click to expand...

How are you feeling?
 
I'm going to have to stop humira for a couple of weeks because of a leg operation, as there are questions whether it is working or not, it will be a good test.
Hoping to get the bloodtest concerning antibodies back as well, as that will definitely decide whether I'll stop completely or not.
 
So I just started Humira on mon. night and this is kind of weird wondering if anyone else had this but its like every other day i wake up feeling amazing have a great day then Boom next day feel like I've been hit by a truck no joke had a great day all together yesterday then wake up today and can barely get out of bed everything hurts didn't do to much yesteday or anything and can't figure out whats going on low grade fever today nothing to worry about
 
Just got insurance approval for Humira and am currently taking Entocort which we will taper after starting humira. My GI office is 3 hours away and not sure how comfortable my PCP's office feels about injection training since he stated that he doesn't know that much about Humira. Does anyone know if a nurse from humira will come to the house to train me how to do the injections? Thought I read that somewhere? Anyhow anyone else have a Humira nurse come to your house for training?? Thanks
 
When I started Humira, a home health nurse came to my house for the initial 4-pen dose, and AbbVie (the Humira company) called me before my injections for the first three months to make sure I was comfortable doing them myself.
 
I think that the Humira company sent a nurse after clearing it with my insurance. You can always call and ask for sure; they've always been very nice and helpful every time I've called them. :thumright:
 
i just started mine and Humira has started a newer program my GI doctors office just had to fax them a paper and Humira pays for what they call an ambassador called me and came to my house and they are basically on call anytime you may need to ask them a question or anything my lady that came was sooo nice and made me feel easier about doing it less intimidating she stayed while I did all 4 shots and went over everything before hand and answered any questions i had only thing was she couldn't do the actual shots for me just coached me through the entire thing
 
I had a partial obstruction and flare last week & my GI upped me to 80mg every two weeks. I'm pretty bummed about having to double my dose. It took a good while for me to accept having to take it in the first place. I really hope she lets me try 40mg again in 6 mos or a year.
 
got the results of prometheus back, i am continuing humira, my next dose will be at the 3 month mark and it is just starting to kick in for me.
 
Hello! Thursday I will be on Humira for 18 weeks. I am happy to report much improved in the pain and diarrhea department- took I would say, 12 wks.
As far as side effects: something weird is happening to skin on my legs, but not severe (psoriasis?) also I DO have fatigue the day after the dose. Does anyone feel crushing fatigue just BEFORE the dose like I do today?
Could it be Crohns fatigue because I need the shot?
All in all I am glad I gave it a chance those 12 weeks! :)
 
Thanks Napali Coast. I have requested your message moved to its own thread so more people see the webinar info as not everyone looks at this thread.

Thank you for sharing.
 
I'm having "mystery symptoms" going on, which I suspected were residual lyme disease or a coinfection. Results from a specialist were negative, but I'm feeling worse anyway. I'm wondering if anyone here has any thoughts, any similar experiences.

I'm having problems with short-term memory, "brain fog," feeling too hot/feverish at times when the ambient temperature doesn't fit (but not running an actual fever when I've been able to check. Very fatigued, increasing joint pain (knees constantly, some back, left elbow and shoulder, fingers), some muscle pain (mostly neck), maybe a little nerve pain, tingling in face accompanied by redness, sometimes a faint white splotchiness on my palms. Occasional little muscle spasms and cramps/charlie horses. Left side seems to be hit more than the right.

The nurse at work noted that the redness in my face was similar to the butterfly rash of lupus. So that's added to my list of things to investigate, along with chronic fatigue and MS, since it's looking like lyme isn't actually the cause for me. I've been on Humira for 2 years.
 
margaretpierce said:
Hello! Thursday I will be on Humira for 18 weeks. I am happy to report much improved in the pain and diarrhea department- took I would say, 12 wks.
As far as side effects: something weird is happening to skin on my legs, but not severe (psoriasis?) also I DO have fatigue the day after the dose. Does anyone feel crushing fatigue just BEFORE the dose like I do today?
Could it be Crohns fatigue because I need the shot?
All in all I am glad I gave it a chance those 12 weeks! :)
Click to expand...

could it be erythema nodosum? red-like bumps on legs?
 
SupportiveMom said:
Thanks Napali Coast. I have requested your message moved to its own thread so more people see the webinar info as not everyone looks at this thread.

Thank you for sharing.
Click to expand...

Napali Coast: I have created a thread in the main treatment forum titled:

Know Your IBD: A Webcast Series for Patients

Dusty. :)
 

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