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Humira Club Support Group

By a flare can you specify? I've had Crohn's for a few years. Other than going to bathroom very frequent . Everyday . Is that a flare? I don't have any pain.
Right now I have constant "D", very painful bowel movements, and several runs to the bathroom per day. I have some pain in the lower right quadrant of my abdomen, which is where my Crohn's lives. No fevers and, surprisingly, no sudden weight loss this time. Weight loss usually hits with my flares. My pain is not the worst ever experienced with my Crohn's but it is there.

A flare would be anything showing there is disease activity. Frequent bathroom activity could be a sign of a flare.
 
Right now I have constant "D", very painful bowel movements, and several runs to the bathroom per day. I have some pain in the lower right quadrant of my abdomen, which is where my Crohn's lives. No fevers and, surprisingly, no sudden weight loss this time. Weight loss usually hits with my flares. My pain is not the worst ever experienced with my Crohn's but it is there.

A flare would be anything showing there is disease activity. Frequent bathroom activity could be a sign of a flare.
I have on and off frequent bowel movements , some minor bowel movements, little rectal pain.
 
It has worked will for 5 years for me. But the standard dosage is 1 injection every 2 weeks. Never heard of 1 a month before. In my case it put me in a long remission.

Right now, though, I am fighting a flare and I have concerns about possibly needing to up the dosage.
I take once a week and it is working great for me so far the injections hurt but rather that then the alternative good luck
 
I take once a week and it is working great for me so far the injections hurt but rather that then the alternative good luck
Thanks ChrissyY. My GI put me on another series of Budesonide and it seems to be kicking the flare into submission. I have an appointment in a couple of weeks and will see what he suggests for long term treatment. I hope we just stay on Humira every 2 weeks.
 
Thanks ChrissyY. My GI put me on another series of Budesonide and it seems to be kicking the flare into submission. I have an appointment in a couple of weeks and will see what he suggests for long term treatment. I hope we just stay on Humira every 2 weeks.
I don't know what Budesonide is I know before I found my wonderful GI doc they put me on so much crap. Because of other problems I am only able to take injectable meds mostly. My common channel (I believe that is the small intetine) is only 65 cm long so absorption is very limited. My first GI doc just didn't get that. 3 rounds of prednisone and almost 50 pounds later I said no more and found my "savior" he understood.
 
I don't know what Budesonide is I know before I found my wonderful GI doc they put me on so much crap. Because of other problems I am only able to take injectable meds mostly. My common channel (I believe that is the small intetine) is only 65 cm long so absorption is very limited. My first GI doc just didn't get that. 3 rounds of prednisone and almost 50 pounds later I said no more and found my "savior" he understood.
Budesonide is a steroid. It is also called Entocort.
 
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
 
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
Agree
 
I have heard of that I don't think he ever put me on that. I know prednisone and other steroids work well for many but for me it just made me gain weight and feel terrible. I'm glad they are helping you. It's so hard for people to understand what we go through with this disease on the outside we look fine but our insides are a mess lol.
Absolutely. Budesonide is a steroid, not as powerful as prednisone. I am on Humira for my maintenance med, so I understand about using injection meds. I had 3 feet of my small intestine and 6 inches of my colon removed because they were such a mess. Before my surgery I had a sudden weight loss of 40 lbs in about 7 weeks. I was a horrible mess, but I had people telling me how I looked wonderful because I lost weight.
 
Last night, after the injection, I counted to fifteen before I took the needle out. It seemed to be was on me.
I always use the yellow indicator to know when the injection is done. Basically the little window where you check the liquid turns yellow. Once it's completely yellow, then I take the needle out.
 
went to the GI last friday as I am starting to have symptoms for the last few weeks , started me on predfoam twice a day and upped my humira to once a week , hope I get improvements soon , been on humira for the last year and it had been great until recently, not used to feeling sick anymore .
 

my little penguin

Moderator
Staff member
Ds needed to increase to every 10 days after a year on humira
Then once a week after another year
He us now on every 5 days
So it can be increased and for him it takes about a month to kick in at the higher frequency

Then it's all good

He is also growing and gaining weight as a kid so essentially just outgrowing his dose
 
When I inject Humira, I have having a reaction at the site of injection. The nurse ambassadors stated it was normal, however when I showed my new GI doc, he stated it was not. He recommended that I take Benadryl 30 minutes before the injection. That worked last time, however the next day the heat, swelling and pain at the injection site was back. I had to take Benadryl every 4-6 hours and I basically slept for 4 days until the reaction went away. I have gained nearly 50 lbs in 4 months on Humira and none of my clothing fits. I'm pretty certain I am going to stop taking Humira. Anyone else have a similar reaction with swelling, heat and pain or even significant weight gain? Did you stay on Humira or stop?
 

my little penguin

Moderator
Staff member
Ds is very allergic to everything
He takes daily Zyrtec which also helps with humira injection site reactions and doesn't make you sleepy
He will take Benadryl if a reaction occurs while on Zyrtec
Zyrtec takes longer to build up in your system

Weight gain could be from your intestine healing so your absorbing more
This happens in kids regardless of the med
Ds has been on humira for 4.5 years without any issue
He is gaining like a normal child not too much
But not too little either

It's normal to have injection site pain
Swelling ? Where are you injecting ?
Was one thigh larger than the other ?
Did they check for antibodies ?
 
Ds is very allergic to everything
He takes daily Zyrtec which also helps with humira injection site reactions and doesn't make you sleepy
He will take Benadryl if a reaction occurs while on Zyrtec
Zyrtec takes longer to build up in your system

Weight gain could be from your intestine healing so your absorbing more
This happens in kids regardless of the med
Ds has been on humira for 4.5 years without any issue
He is gaining like a normal child not too much
But not too little either

It's normal to have injection site pain
Swelling ? Where are you injecting ?
Was one thigh larger than the other ?
Did they check for antibodies ?
I'm not really eating enough to gain that kind of weight. I have a 500 calorie deficit daily to try to lose/maintain and it just keeps going up. Not sure what to do.

I am injecting in my thigh and afterward it looks like a softball. When I showed my GI doc a pic, he was concerned. He asked me to put it in the backside of my arm. I tried that and my shirt sleeve was so tight I had to wear a sleeveless top and my husband's jacket to work. It was embarrassing because I had to keep explaining why my arm looked like it did. A co-worker asked if I had a tumor.:yfrown:
 
Penguin is right that the weight gain could be due to absorbing nutrients because of a healing gut.

I don't know why this kind of swelling is happening. At my injection site I get a small amount of swelling. It looks like a mosquito bite and it usually goes away in a few minutes after the injection. That is the "normal" reaction to me.
 
I went to my G.I. yesterday to followup on my latest flare. Their is some pain but it is not too bad right now. I am actually rather use to it. But my G.I. wants to know why it isn't going away on the Budesonide. So he ordered the Prometheus blood test to check levels of Humira. Now we are seeing if the insurance will cover the test. Apparently my insurance has a reputation for not paying for this test. Not sure what I would do if the insurance will not pay for it. Is there any program that would cover some of the cost?


I also am scheduled for a colonoscopy next Thursday.
 
Hi Doug. When I had a Prometheus test done earlier this year, I was advised by my GI team at Cedars-Siani to have the test performed down the street at UCLA since Cedars is billed as out-of-network. They were right. UCLA ended up being in-network. I realize you most likely don't live in the Greater Los Angeles Area, but the point I'm trying to make is it depends on the lab that does the draw and eventually processes the claim and not Prometheus. You'll have to do some research for your area. I believe Prometheus has a help line that you could try and inquire which lab might be your best bet. Good luck.
 
Prometheus will help appeal things with the insurance to try to get them to cover it. I will tell you I have UHC and Prometheus billed them $2,500 for the test. My insurance paid what they should after I met my deductible. They have the Prometheus Links program that can help defer the cost if the insurance denies it or you have a big deductible- it can make the cost be $250, $175, or $75. The program has an income threshold though. For a 2 person household it was in the low 80k range for the cutoff. 888-892-8391 is the number for the billing/links program. The website has the application, but minimal info on how it works.

To add I had it drawn at home through the mobile phlebotomy company through Prometheus. I needed a Sunday draw.
 

my little penguin

Moderator
Staff member
Who draws it can make a difference
One was done at the hospital lab - covered 100%
Second one was done at our house per Prometheus new rules
Not covered at all
Had to appeal etc..
Eventually taken care of but it took over a year
 
I will qualify for the Prometheus Links program. So I am happy about that. My GI's nurse is checking to see where I can get the blood draw taken. Just waiting for the word.
 
Yay!

Just used the first one of the new Humira syringe today. Very quick and easy and NO STINGING!

With the last ones I would take about 15-20 seconds to inject so I could pause when it stung.

Brilliant!
 
last post on the humira support , Im starting REMICADE® (infliximab)in the next day or so , been in hospital for the last few days with a bad flare , oral pred had no effect so im on iv hydrocortisone and its helping bring it back under control , here's hoping the remicade will work fast .
 
last post on the humira support , Im starting REMICADE® (infliximab)in the next day or so , been in hospital for the last few days with a bad flare , oral pred had no effect so im on iv hydrocortisone and its helping bring it back under control , here's hoping the remicade will work fast .
Hoping the best for you.
 
The FDA approval was for all indications that Humira is approved. Including Crohn's and Ulcerative Colitis.

According to the article AbbVie is suing the manufacturer for patent infringement, trying to get the courts to block this biosimilar from coming onto the market. Humira accounts for about 60% of AbbVie's gross revenues, so I am sure they are fighting this tooth and nail.
 
Visited my G.I. today. Got the results of the Prometheus test and my Humira level is 2.1. To be therapeutic it should be 5.0. Good thing is I have not built up the anti-bodies to the Humira. We are switching to weekly injections. Hopefully we don't get push back from the insurance.

Also, the biosies from my last colonoscopy show inflammation markers. So I think the ulcer that was found at my surgery site was definitely active Crohn's.
 
Hello All! Several years ago I had hip replacement surgery. I was scheduled to undergo two successive knee replacement surgeries three years ago , when I came down with severe UC . After two years of generally unsuccessful treatments, and sporadic remissions, I finally wound up on Humira and , so far, a year long remission. During the ensuing time I also developed a deteriorated shoulder joint , which now also needs replacement. I am in constant, sometimes , excruciating pain. The Orthopedic Surgeon who did my hip and was to do my knees has informed me that he will not operate on me because I am a Humira patient. I have managed to find a few surgeons who will operate , If I can suspend the Humira injections for a period of time preceding the operation ( 10 days to 2 wks ) and a period of time after. (????). Has anyone using Humira been faced with a similar situation? I would appreciate any input or advice anyone could offer. Rivergypsy
 
Hello All! Several years ago I had hip replacement surgery. I was scheduled to undergo two successive knee replacement surgeries three years ago , when I came down with severe UC . After two years of generally unsuccessful treatments, and sporadic remissions, I finally wound up on Humira and , so far, a year long remission. During the ensuing time I also developed a deteriorated shoulder joint , which now also needs replacement. I am in constant, sometimes , excruciating pain. The Orthopedic Surgeon who did my hip and was to do my knees has informed me that he will not operate on me because I am a Humira patient. I have managed to find a few surgeons who will operate , If I can suspend the Humira injections for a period of time preceding the operation ( 10 days to 2 wks ) and a period of time after. (????). Has anyone using Humira been faced with a similar situation? I would appreciate any input or advice anyone could offer. Rivergypsy
Don't let it be for an extended time otherwise you might develop antibodies. Consult with your GI.
 

my little penguin

Moderator
Staff member
DS had his tonsils out while on humira
So he took humira
Two weeks later had his surgery
And waited a week or so to have humira again


Last year he had mastoiditis so they pulled humira while he was on iv abx and later oral abx
A total of 4 weeks without humira
He did end up on pred afterwards while waiting for humira to kick back in
Now a year and half later not an issue

Good luck with your surgery
 

Maya142

Moderator
Staff member
Generally you will have to stop a biologic for a major surgery. My girls both have AS and we have been told that when they need hip replacements (or any joint replacements), we will have to stop biologics (older one is on Humira) in advance.

For some minor surgeries, they have been allowed to stay on biologics, but for a major surgery it is generally considered too risky (because of the infection risk).

My girls were both made to stop Humira for just a wisdom teeth surgery -- and that's a pretty minor surgery. Both girls missed 3 doses (both were on weekly Humira). Both did flare, but they also healed very well -- no complications.

You should definitely have your GI and orthopedic surgeon talk to each other and figure out how long you need to be off Humira.

Antibodies typically take months to form - not weeks, so you should be ok on that front.
 
Generally you will have to stop a biologic for a major surgery. My girls both have AS and we have been told that when they need hip replacements (or any joint replacements), we will have to stop biologics (older one is on Humira) in advance.

For some minor surgeries, they have been allowed to stay on biologics, but for a major surgery it is generally considered too risky (because of the infection risk).

My girls were both made to stop Humira for just a wisdom teeth surgery -- and that's a pretty minor surgery. Both girls missed 3 doses (both were on weekly Humira). Both did flare, but they also healed very well -- no complications.

You should definitely have your GI and orthopedic surgeon talk to each other and figure out how long you need to be off Humira.

Antibodies typically take months to form - not weeks, so you should be ok on that front.
In the near future, I have to have a benign place removed from my scalp. I wonder if I will have to stop the Humira for that?
 

Maya142

Moderator
Staff member
That is really something to ask your doctor.

My daughter actually had a mole removed from her scalp while on a biologic, Imuran and Prednisone in the spring. It took forever to heal - they told us one month, but it took 6!! In hindsight, I wish we had waited till she was off the Prednisone at the very least.

It really depends on many things - infection risk, your history, the kind of surgery etc.
 
I was told to temporarily suspend my Humira because of upcoming surgery. Waiting for a call back from surgeon on when I can restart the Humira.
 
Good Luck with surgery Ron!!!! I've been gone awhile. I did end up being taken off the Asacol. Then Doc put me on Azathioprine and after about a month he said let's do Humira. Today was my first set of 4 shots. I hope this works! Is anyone else on Azathioprine and Humira together?
 
Good Luck with surgery Ron!!!! I've been gone awhile. I did end up being taken off the Asacol. Then Doc put me on Azathioprine and after about a month he said let's do Humira. Today was my first set of 4 shots. I hope this works! Is anyone else on Azathioprine and Humira together?
Thanks. It turned out to be squamous cell cancer but they got it all.
 

my little penguin

Moderator
Staff member
If you didn't take it out
It's good till the expiration date on the drug box
So about a year
Calling my humira program or ask your pharmacist they should be able to tell you
Officially
 
Well, I was informed by my insurance company today they are denying my change to weekly Humira injections. This change has become a nightmare. I hate insurance company's playing doctor. They told me that they would cover Remicade, Entivyo, or Cimzia. So it looks like my days in the Humira Club are numbered. Thanks, insurance company!
 

my little penguin

Moderator
Staff member
Wow
Can't believe they won't approve it
Ds went from every two weeks
To every 10 days
To every week
To every 5 days over the past 5 years
Never had to get it re approved
Once the drug was approved any frequency was"fine"

Hope the doc can appeal the denial for you
 
My G.I. appealed the decision from the insurance company to deny the weekly Humira. We lost that round of appeal. We filed a second appeal, and lost that as well. The third round of appeal has been filed. In the meantime, my G.I. is providing me with Humira samples to supplement my old every other week prescription. So I have actually been on weekly Humira for 6 weeks now. I really hope we get the insurance company to change their minds because in 6 weeks my abdominal pain has gone away and my stools are coming around to being solidified. The weekly Humira is working. I would hate to have to make a change because the insurance company does not want to pay for this.
 
The Humira got me to a point of remission, I believe. Unfortunately I was dealing with some lesions that might as well have been cancer...the next stage was cancer. I made the decision to stop. Out of three doctors, none would advise me about what to do. Go figure. Good luck to you. HUMIRA DID NOT GIVE ME CANCER. IT LOWERED MY IMMUNE SYSTEM SO MUCH THAT MY BODY COULDN'T FIGHT IT. I want to be clear about that part.
 
Thanks Jimmy. My G.I. is providing the sample pens for free while we fight this decision. I have studied my options if we don't win this appeal, which are Remicade, Entyvio, and Cimzia. (The insurance company has told us they would cover these meds.)
 
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Well, this is a different twist. We lost the last round of appeal. But my G.I. has decided to provide me with 2 free samples of Humira pens a month. We are also continuing my old prescription for Humira every 2 weeks, which the insurance will pay for. I did not think this was an option, but my G.I. has talked to the drug representative and has made the arrangements. I am very happy about this development.
 
Well, this is a different twist. We lost the last round of appeal. But my G.I. has decided to provide me with 2 free samples of Humira pens a month. We are also continuing my old prescription for Humira every 2 weeks, which the insurance will pay for. I did not think this was an option, but my G.I. has talked to the drug representative and has made the arrangements. I am very happy about this development.
Doug, just curious, as I am battling insurance now. You say insurance won every round. On what grounds? Any advice or lessons learned insurance-wise?i did not get push-back from insurance when requesting weekly Humira but am getting pushback to try Stelara. Cool that your gi has samples for you.
 
The grounds for their decision was the FDA regulations, which for Humira is 1 shot every other week. The insurance company's rules are they will not pay for dosages that exceed the FDA regulations. Did not matter what my G.I. said or did. I wish I could be of more help on your situation Mark.

I saw my G.I. yesterday and the situation has changed. Abbvie will not let him continue using samples, They want to be paid for their med. I get it. The weekly Humira has put me back into remission, so now I will go back to every other week. If I experience any symptoms I am to contact him and we will go for a new biologic therapy. This never seems to end.
 
Well, this is a different twist. We lost the last round of appeal. But my G.I. has decided to provide me with 2 free samples of Humira pens a month. We are also continuing my old prescription for Humira every 2 weeks, which the insurance will pay for. I did not think this was an option, but my G.I. has talked to the drug representative and has made the arrangements. I am very happy about this development.
Great News!:dance:
 
Saw my GI today. The decision was made to switch me to Entyvio. I expect the insurance company to approve Entyvio because their letters denying the weekly Humira showed a list of biologics they would approve. Entyvio was on the list. So after 5 years 6 months of Humira, which did a incredible job for years and when it started failing it was not due to anti-bodies being built up, it was simply levels below therapeutic level.

I will stay around the Humira Club if you folks will have me. But I will also join the Entyvio Club.
 
Saw my GI today. The decision was made to switch me to Entyvio. I expect the insurance company to approve Entyvio because their letters denying the weekly Humira showed a list of biologics they would approve. Entyvio was on the list. So after 5 years 6 months of Humira, which did a incredible job for years and when it started failing it was not due to anti-bodies being built up, it was simply levels below therapeutic level.

I will stay around the Humira Club if you folks will have me. But I will also join the Entyvio Club.
Sure, we will have you and I wish you the best on Entyvio.
 
Humira is a wonder drug. Having tried so many drugs and not having found results I have been so relieved after finding Humira. While it really clears up blood and arthritis symptoms I am also finding that it is a remarkable way to get off a lot of the pills. Humira injections are much more convenient and a better way to manage severe symptoms. My doctor recommended the drug for arthritis since after having crohns for so many years arthritis started to develop in a bad way. This way very discouraging. My parents pushed me to find resources to get help for myself. Through many doctors visits I finally found that help with the drug Humira. My prayers at night were answered. Today, I am in remission and thankful that I pulled through with the drug Humira. The injections are painful but after so many doses I was able to gradually wein off the drug into a more stabilized routine of resting with a modified diet. When I was done with drug my legs felt pain and soreness but I was glad I could be in a more stabilized routine and not have to bleeding from my colon. This was some of the relief we had been looking for, after many years of struggling to make it by. Humira truly is a wonder drug. I feel so blessed they have something like this on the market. My family and I have a new life with Humira. While it is a wonder drug, it still takes a lot of work to maintain fitness with Crohns Disease. By this I mean doing walking everyday to maintain my strength. The responsibilities with crohns disease are endless, but Humira is making the journey a lot more peaceful. I am grateful for Humira but at the same time it was a last resort when I started the drug and it really worked for me. Now my life is about therapy to maintain a level a care. The work never ends with crohns and colitis but humira is saving lives by creating ways for people to gain remission in their lives. As I have reflected on my own journey I hope others will share their stories with me on how they are coping. Diana from Stroudsburg, Pennsylvania
 
hellmira works good for my crohns but the side effects destroyed what was left of my life. I hate this drug and wish I could get off it. it is a nightmare, then again severe crohns is a nightmare as well. cant wait till the end of it all.
 
hellmira works good for my crohns but the side effects destroyed what was left of my life. I hate this drug and wish I could get off it. it is a nightmare, then again severe crohns is a nightmare as well. cant wait till the end of it all.
I'm sorry, Paul. Would you elaborate? What are your side effects? I'm a month into weekly injections of Humira from a year of biweekly, and I feel worse!!!!!
 
Well, I seem to have side effects that ive only seen a couple other people mention so i'm sure you wont get these.

My side effects are severe ringing in my ears, very increased level of social anxiety which I've always suffered from, increased depression and really bad panic attacks. Also insomnia. I feel the higher the dose the better it works for my case of crohns but also the side effects become unbearable. this has led to drinking and taking drugs every day just to deal with all of this. I really hope I get some more serious health prob. so it will end naturally and soon for me. ive been on this med after trying every natural homeopathic treatment under the sun. (about 8 yrs ).

I'm sure it will go better for you bec. I haven't noticed these side effects listed by anyone else but me. actually , two people had similar complaints but that's not a lot compared to how many people take it.

hope you get better soon!!
 
Well, I seem to have side effects that ive only seen a couple other people mention so i'm sure you wont get these.

My side effects are severe ringing in my ears, very increased level of social anxiety which I've always suffered from, increased depression and really bad panic attacks. Also insomnia. I feel the higher the dose the better it works for my case of crohns but also the side effects become unbearable. this has led to drinking and taking drugs every day just to deal with all of this. I really hope I get some more serious health prob. so it will end naturally and soon for me. ive been on this med after trying every natural homeopathic treatment under the sun. (about 8 yrs ).

I'm sure it will go better for you bec. I haven't noticed these side effects listed by anyone else but me. actually , two people had similar complaints but that's not a lot compared to how many people take it.

hope you get better soon!!
I'm so sorry you're in such an awful place. At the risk of sounding dumb, have you considered trying a different biologic to see if the side effects would be less? I know Crohn's treatment isn't just about trying to achieve remission, but get or regain a better quality of life!

What I experience is hyper skin sensitivity at times. Fevers that make my skin crawl. Insomnia. I always feel fluish the 24-36 hrs after injection and for me, Ive not experienced remission.

Anyhow, sending you warm thoughts and hugs.
 
Hello all! This is my first post. I'm pretty new to this forum. I've been pretty much flaring up since my youngest son was born in Nov 2014, but ignored a lot of the symptoms. I haven't been on any medication since 2008 (I'm 34 and have had Crohn's since I was 16, diagnosed in '99). I obviously didn't take good care of myself and I think these last few years of being in a flare and not taking care of it created lots of scar tissue in my ileum. I had a sudden attack. Dr said dilation of my intestines and severe inflammation. He didn't say partial obstruction or stricture outright because the CT can't really confirm that but I have never felt a pain like that before in all my years with Crohn's. I couldn't use the bathroom, I couldn't walk normally and my whole abdomen felt like Mike Tyson punched me.
I've been on Prednisone for a month and a half now. First attempt at tapering didn't work so I went back up to 40mg. Now that I got approved for Humira I've continued to taper but all my pain and fatigue are coming back.
I'm nervous about all the side effects of Humira but I hope it works to get my energy levels and pain under control.

How quickly does Humira work? I start on Tuesday but I'm nervous about continuing to taper off the Pred. Even though I hate it, and I feel like it's just a mask, it does relieve the pain.

All feedback appreciated!! Thanks!
 
I'm 60yr old male diagnosed with Crohn's. I have pain constantly, some days real bad, others I have discomfort. I tried entocort and that didn't work. My doctor is putting me on Humira which I'm really afraid of taking seeing all the side effects it causes. What are your experiences taking Humira?
 
Everyone is different in how they react to medicies. I am getting ready to go off of Humira because it didn't do anything for my crohns .
 
I have been on Humira for 3 months now. No side effects that I can tell. I have had Crohn's for 41 years. Had a surgery in 2000 for strictures. The Humira takes awhile to start working but I do feel a difference and feel like it is helping me. Like said, people react differently.
 
I'm 60yr old male diagnosed with Crohn's. I have pain constantly, some days real bad, others I have discomfort. I tried entocort and that didn't work. My doctor is putting me on Humira which I'm really afraid of taking seeing all the side effects it causes. What are your experiences taking Humira?
I have been on humira since 2012. Humira has been very good for me. The side affects aren't too bad. The side effects haven't been too bad. I get flush after my injection, and get tired after my injection. Other than that, I am great. I am not in remission, but I work full time and live a normal life. You can't ask for more than that :). In my experience, giving my shot in my stomach is much easier and less painful.
 
I just had my loading doses two weeks ago. Joint pain started about five days afterwards and I am fatigued but it's not been a miserable experience. I liken it to having worked out really well the day before and you wake up sore the next day.
 
My 19 yr old daughter was diagnosed with Crohn's early Feb this year and is getting her first dose of Humira on Wed. She had symptoms of stomach pain for around 3 months before she saw a GI. It never crossed my mind that this is what she could have as her bowel movements were normal. I'm poop obsessed as I have had UC for around 25 yrs. I feel so bad for her.

She was put on 40mg pred straight away for 2 weeks and then tapered off. Her pain came back so went on Aza 100mg and she has pain maybe once every few weeks but only for 5/10 mins, bowels still good. The calprotection is still very high so dropped aza to 75mg and put on humira.

The PBS in Australia covers this ($38) but she is going to USA to work for Disney for 1 year (all planned before diagnosed) and sorting out insurance is a nightmare.
 
The PBS in Australia covers this ($38) but she is going to USA to work for Disney for 1 year (all planned before diagnosed) and sorting out insurance is a nightmare.
Is she working directly for Disney? I would think Disney would cover her for health insurance while working in the US. I would talk to Disney and see if they have any health insurance plan for their workers. I would think it would work out.
 
She is working directly for them. Unfortunately their insurance is limited...especially for pre exsisting. I'm waiting to hear back from them regarding getting our own insurance....it seems to be a bit of a grey area.
 
Is she working directly for Disney? I would think Disney would cover her for health insurance while working in the US. I would talk to Disney and see if they have any health insurance plan for their workers. I would think it would work out.
Disney do provide 2 choices of insurance but neither cover pre existing conditions. She is travelling on a J-1 visa so it's basic-ish cover. Still waiting in emails from elsewhere with info.

On a good note....she had her loading dose yesterday. 4 in her stomach and apart from a slight sting with each, she has had no side effects...so far.
 
Disney do provide 2 choices of insurance but neither cover pre existing conditions. She is travelling on a J-1 visa so it's basic-ish cover. Still waiting in emails from elsewhere with info.
I just did a little research and found out something about the Affordable Care Act that I did not know. Immigrants in the United States on a J-1 visa are exempt from the ACA for 5 years! This means employer's do not have to offer them coverage meeting the ACA requirements. (No pre-existing condition coverage). The ACA stopped the practice of not covering pre-existing conditions for us American citizens. I thought it was eliminated for all individuals. Another flaw in the ACA that needs correcting. I hope the Trump bill does that, but I doubt it.
 
Heard back from Disney and it is compulsory to have their insurance (albeit nearly useless) as they are the visa sponsors.

Does anyone have experience of the Humira Patient Assistance Program? Can anyone apply or do you need to be a US citizen?
 
You want to contact the Humira co pay assistance folks because they have other programs for when you are not insured. The co-pay assistance program is the most common. I am not sure how the others work. But it is worth a try.
 
I have suffered from Crohn's since 1997. I have had two surgeries. I have been suffering from a flair up since December 2016. Been on Humira since April 2017.

How long does it take for the med to work. I have been in the hospital four times since December of 2016. Since starting Humira, it seems as if I have been sicker. The cramps and pain are everyday. When the vomiting doesn't stop after a few hours I go to the hospital. My surgeon seems to think that Humira is a wonder drug and has ruled out another surgery because of my age.

I'm very frustrated at this point. Every time a take a Humira injection, I get sick four to five days later. Trying to get in to see a specialists at University of Michigan. I try to keep my spirits up. I have a good job that is sticking by me at this point, great health insurance and a great support group so I am very thankful for the blessings in my life and I don't complain, as I know it could be a lot worse.

If someone could advise me on the Humira deal that would be great. I'm just tired of being sick and not feeling well all the time. My quality of life has gone down the tubes since the flair up in December of 2016. I don't make plans because I never know how I'm going to feel from one day to the nex
 
I think i have heard with some people it could take as long as six months. I hope you can get in to see the specialist soon. Keep us updated.
 

my little penguin

Moderator
Staff member
How often are you taking humira ?
It can take 3-5 months
But some need more frequent dosing
Ds is currently on a shot every 5 days
Plus methotrexate
Methotrexate can boost Humira
He has been on it over 5 years at this point
When he first started it took every bit of 5 months and closer to 6 months but he was on humira every two weeks
Then moved to every 10 days
Then every 7 days

Are you on steriods while starting humira
This makes the humira more effective faster
Since you probably have a lot of inflammation still

Hope your second opinion has ideas

You said surgeon
What does your GI say ???
If no GI then please see one asap
 
Starting my loading dose tomorrow, 4 shots, for active Crohns Disease in the gut.

I'm either feeling bunged up, or not holding anything in and it's exhausting me. I remember when I first had an infliximab and within 3 days I was much better. It terrifies me to think that Humira could take several months to begin working and controlling a flare.

Does Humira work like an infliximab / prednisone to get rid of ulcers or as a maintenance drug like Azathioprine?

Prednisone isn't working for me any more, I am hoping the Humira works as a boost to overcome the flare.
 
The loading dose of Humira was awesome, and for a couple of weeks I felt great. Hopefully the first 4 shots will give you a break...good luck!
 
I am pending approval from Aetna to get started, but preparing mentally. When you do the loading dose, do you feel any different afterwards? (Is there anything I should prepare for other than the injection pain?)
 
No the giving yourself the shot just stings a little while drug is put in. Just rub your injection spot after and it goes away pretty quickly. No other effects for me. Good luck.
 
The loading dose is not that bad. Just don't hesitate and be thinking about it. Push the button and count to 10 or so. The nurse that showed me how to do it said to inject in the belly. I have been doing it since February. You will probably feel really tired that evening so don't be alarmed. It is one of the common occurrences to the injection. I still get a little tired even on the single pen injections.
 
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