Humira Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Scaryman,

I really appreciate your reply.. Luckily for me my doctor's as of now think that Humira is an overkill for my condition. The only problem is that the Chemo like drugs give me such bad reactions as I mentioned. I think I may give Humira a try after your encouragement as they too feel that it may be my last resort for now. It's just unfortunate that someone like me, who has had what I believe to be mild flares and typically am not incapacitated because of my Crohn's, has already reached the last resort medicine. My prescription will actually just consist of the Humira though, not the Methotroxate too. He gave me more of an OR situation, basically leaving it up to me to decide which medicine I should take. I plan on going to Duke University in North Carolina very soon to get a second opinion also, but until then I need to start something.

Here's to just praying that new medicine will soon be FDA approved! Us Crohn's people need some sort of relief. I'm a little tired of whining to my wife about my stomach hurting, LOL.

Joey
 
Joey I am newly diagnosed and my GI practices from the "top down" theory. After 4 months on Prednisone with bad withdrawals I started on Humira. We are not waiting for surgery to be our last option prior to Humira. I guess it all depends on what your doctors management style is. Just know that this is very common to jump on it early and hard.
 
Hey I just joined this in hopes that I can get some reassurance, I'm possibly starting humira in a week or two and I'm terrified of taking drugs,
I've been meds free for almost ten years now and have had one re section in my life time, for the most part I am extremely lucky for how small my side effects have been after my surgery! I get minor flare up and minimal pain but I've always had diarrhea and slight stomach discomfort with gas and pain.. Also from time to time my skin on my face in the corners of my mouth and on my eye lids will flare up and crack.. Just in these last few months though I've been having a lot of issues with all my joints, it seems just as one joint starts to get better another will swell up and cause arthritis like pain.. So I've been in the dr office and getting blood work every week and twice a week until my specialist contacted me to pretty say that it's enough and now it's time for me to take further steps... Aka Humira
I lean more towards natural remedies and believe that a lot of may 'crohns' symptoms are due to food allergies. I was allergic to literally everything as a baby but out grew a lot as I got older.. Now my issue is I can't afford a natural path and so my only option seems to be the meds... I am terrified of taking anything with the side effects and it may be the one thing that keeps me from going through with Humira... Please what do I need to be aware of starting from day one to a month or three later and even long term
 
Red89 said:
Hey I just joined this in hopes that I can get some reassurance, I'm possibly starting humira in a week or two and I'm terrified of taking drugs,
I've been meds free for almost ten years now and have had one re section in my life time, for the most part I am extremely lucky for how small my side effects have been after my surgery! I get minor flare up and minimal pain but I've always had diarrhea and slight stomach discomfort with gas and pain.. Also from time to time my skin on my face in the corners of my mouth and on my eye lids will flare up and crack.. Just in these last few months though I've been having a lot of issues with all my joints, it seems just as one joint starts to get better another will swell up and cause arthritis like pain.. So I've been in the dr office and getting blood work every week and twice a week until my specialist contacted me to pretty say that it's enough and now it's time for me to take further steps... Aka Humira
I lean more towards natural remedies and believe that a lot of may 'crohns' symptoms are due to food allergies. I was allergic to literally everything as a baby but out grew a lot as I got older.. Now my issue is I can't afford a natural path and so my only option seems to be the meds... I am terrified of taking anything with the side effects and it may be the one thing that keeps me from going through with Humira... Please what do I need to be aware of starting from day one to a month or three later and even long term
Click to expand...

Hey just wanted to say hi. I just started humira today so I have no expert advice ...however it was a very tough decision for me to go on meds. I am still seeing a naturopath as well, but even she advised start with humira get things under control also do the diet and then maybe I can come off humira. I say give it a chance, but only you know what is best for you.

Hugs,
Christina
 
I was diagnosed in May of this year, my doctor left me no choice other than Humira. It has done wonders for me, but as I read every ones posts i see all kinds of other things listed that people are taking in addition to the Humira. Are these choice medications or doctor recommended choices? Makes me wonder if I should be adding something. I have never had any kind of health problems prior to this horrible Crohn's diagnosis.
 
I looked up methotrexate in combo with Humira. It seems this combo is directed more to different types of Crohns or UC, or is added when Humira alone is not working. My Crohns is in the TI and Humira alone is the first method of administration. I don't want to add anything more than what's necessary , so for me Humira and Pentasa is what I'm currently on. It's only been 8 weeks for Humira. I'm not in remission yet.
 
I started Humira at the end of October this year and due to bronchitis/cold, I was told to skip my last injection (last week Thursday), boy have I noticed the difference. It had not put me into remission yet, but I felt like I was on my way (finally). Skipping last week's dosage, I noticed by Saturday that I was feeling icky again, diarrhea increased, joint pain etc. But the weird thing was that with the joint pain, I noticed that different joints were hurting more than usual. Usually my joint pain is in my back and knees, now I feel it in my ankles and fingers.

Has anyone else ever experienced the start and stop then start again process with Humira?
 
Red89,

You seem to have very similar situations to me. Unfortunately, I do have the extreme pains in my stomach and back like most Crohn's patients. I have never had the D or really any of the other effects other than weight loss. I too went almost 10 years without any medication. My doctor is a little more hesitant to just throw me on Humira, but we really all eventually get left with ONE choice.
 
LodgeLady said:
I would consider Agent99's reply of 4 years on Humira a success story. I am hoping I get some longevity in taking Humira.

Question. Does the fatigue that follows right after taking a shot ever go away?
Click to expand...

Sorry for the late reply, LodgeLady! Yes, I use to become fatigued and have headaches when I first started Humira. It was so bad that it affected my weekend (I injected on Fridays), so I started injecting on the beginning of the week instead. I'm back to Friday injections and it doesn't seem to bother me like it did in the beginning.
 
Titanette said:
I was diagnosed in May of this year, my doctor left me no choice other than Humira. It has done wonders for me, but as I read every ones posts i see all kinds of other things listed that people are taking in addition to the Humira. Are these choice medications or doctor recommended choices? Makes me wonder if I should be adding something. I have never had any kind of health problems prior to this horrible Crohn's diagnosis.
Click to expand...

Titanette - I've been on Humira for 4 yrs now and my doctor would rather that I take Humira AND 6mp. However, I get a severe reaction to 6mp (severe nausea and vomiting, stomach pains, and my entire body gets cold from the inside... just cant get warm). Anyway, the reason he wanted me on the 6mp is because adding the 6mp to the Humira treatment has shown to lengthen the amount of time Humira is effective before the body develops antibodies to the Humira. Since I can't take the 6mp, I'm only on Humira and I've had good luck with it. I recently had a blood test and it showed that I have NOT developed the antibodies to Humira. I've been feeling poorly though, so the good ole colonoscopy is tomorrow. Oh Joy!
 
Spoke with my Doc today. While we are waiting for the full effects of Humira to happen , he agreed to let me slowly re-introduce some fiber in my diet. IE, small salad. I have been on a low fiber diet for 4 1/2 months. He said I will know within 2 days if any of this reintroduction will negatively effect me. So small salad tonight it is!
 
Agent99, thanks for the response. I am not sure what 6mp even is. My doctor has not recommended anything but the Humira. I see her next month, so I guess I will ask. I would prefer not to have anything else in my body if possible. I hate that I am on the Humira.
 
Sorry to post twice so quickly, but one more question. Has anyone had high blood pressure since going on Humira? My blood pressure has always been low, but it has been off the charts high. Had a depo shot appointment and they almost didnt give it to me due to my blood pressure being so high. Went in for my follow up Hep. A vaccination and once again it was really high. I have to wonder if the Humira is the cause.
 
No blood pressure issues but I now have a second respiratory infection in 2 months since starting Humira. I am really trying to give this drug a chance. I'm still not pain free, appetite comes and goes, and now these infections.

I hope your BP settles down soon.


Sent from my iPhone using Tapatalk
 
My bp has been a little high, but I attribute that to age and excessive weight (and possibly hereditary). I don't believe it is anything new since beginning Humira.

I found myself to be less sick while on Humira. When I first started, I posted a sign on my office door and asked all sick people to not enter my office (haha). Now, I'm still very concerned about getting near sick people, but I also know that I feel healthier while on the Humira. My thinking is that while off the Humira, my immune system is out of control overactive. This causes my immune system to fight itself (and cause illness symptoms). While on the Humira, my immune system is "more normal" and thus, it doesn't over react to perceived illness. I dunno... could be erroneous thinking, but I do know that my illnesses (colds, URIs, etc) have significantly decreased on Humira.

I had my colonoscopy yesterday. Although I didn't get to speak with the doc afterwards because I was still sedated, the post-op staff gave me details and the doc did speak with my hubby. Seems I have a small area of inflammation bu it's one of the better colonoscopys that I've had....meaning the Humira is working and he's going to keep me on it. I've got to go back on a strict diet until I see the doc for my follow-up. All-in-all, I'm pleased with the results, however, now I'm concerned that something else is going on because I have had severe lower abdominal pain recently. I've had a hysterectomy (retained ovaries). Now I wonder if what I was feeling was ovary pain from a cyst or something. However, at my recent gyn appt, my gyn pointed out that at my age (haha) my ovaries are not producing much (I can attest to that.... hot flashes!). I guess I'll wait to see what happens at my follow-up.

Good luck on the "small salad" LodgeLady.......... that's one of the things I miss the most when I'm flaring..... a fresh salad!
 
Funding issue kicked in.
my doctor wants me on increased dose of Humira to see if it will help the Anal Sinus try and close over. Surgery failed three times and it seems to be closing with Humira but the nearer its time for another injection the skin is tearing.

so Christmas Eve I had 3 shots and been feeling really unwell. the blurred vision is finally getting a bit better but that feeling you get when flu is just about going to start and shivering and of course being the holidays the NHS basically shuts down.
 
Hi. I have just had my first 4 doses of Humira on Friday. I have been having a flare up since June but it has been really bad over last 4 weeks (Christmas was ruined!). When nurse came to show me how to use the injection pen, she said that I should start feeling the effects of the Humira straight away. I got quite excited that I might start feeling more 'normal' again. But 4 days later and I am still running to the toilet 20+ times a day (I don't know where it all comes from as I am not really eating anything!). I feel absolutely exhausted and have not got out of bed for 2 days. I have been reading lots on line about Humira and I do realise it can take up to 6 months to kick in, so why did the nurse have to raise my hopes??? I am at a loss as to what to do with myself. I've lost a lot of weight (luckily I have a lot to lose!), I am exhausted and my bottom is so sore from going all the time that I can barely sit down (I tend to lay on my side). I rang gastro nurses at hospital for advice and they are closed until the 6th January so rang consultant directly and HE is away until 6th January. In desperation I rang GP who said 'ring your gastro nurse'!! He didn't have any ideas of what to do with me. He gave me more loperamide which I am taking, but that is giving me terrible cramps. I'm in a vicious cycle. Any suggestions??
How long does it take for Humira to start helping? I'm happy that I don't seem to have any negative side effects other than feeling very tired, but I guess that is more because I am in a flare rather than the Humira.
A bit of a rant and moan, sorry. Just feeling a bit fed up! Was looking forward to 'partying it up' tonight but I guess that's off the agenda!!
 
Sorry to hear about your suffering, Jennifer! I started Humira on September 3 and feel that it is just recently starting to make any kind of difference. My gastro added a small daily dose of Azathioprine also in November, and I am on various other meds for Crohn's and its related issues. My Crohn's was/is severe, however, and was totally out of control when I started Humira, so hopefully yours will kick in sooner. I will likely be going to weekly injections in March when I see my doc again because I'm still not feeling enough benefits from my current dose (every other week).
 
Thanks for reply. I too have very 'out of control' severe crohn's so maybe I just need to give it time. Unfortunately I have been on most other medication for crohn's and have had bad reactions to all of them, except infliximab, so I really have my fingers crossed!!
 
JenniferH said:
Thanks for reply. I too have very 'out of control' severe crohn's so maybe I just need to give it time. Unfortunately I have been on most other medication for crohn's and have had bad reactions to all of them, except infliximab, so I really have my fingers crossed!!
Click to expand...

Jennifer, I to am new to Humira and agree the nurse should not have told you that Humira would start immediately. As with crohn's, everyone is different, symptom's, treatment's etc. they way medication would work, would also have to be per the individual.

When I started Humira, I was in a flare but I did see result by the time I was giving my self the second (2 shots) injections, however I was still in a flare. Unfortunately, I had to stop due to bronchitis/cold. Once I was off for a few days beyond when I was supposed to take it, I noticed other symptoms along with normal, for me, crohn's symptoms back.

When I first started to consider Humira, this site and all the postings is what convinced me to give it a try, and I am so glad that I did because I have received more information from the posts that I have ever gotten from My Humira or the doctors.

best of luck
Sandi
 
Hello, I just started my loading dose of Humira... i cannot begin to describe how much that hurt!! I was expecting it to be bad because, I can be a real baby when it comes to needles and things of that sort (i'm working on it, i'm getting much better..well i kinda have to lol) ... but oh my, that was the worse pain I've ever felt. I was just wondering if anyone else experienced a lot of pain from the injections. What have you done to cope? It wasn't the needle piercing my skin that hurt, i felt it hit but it was the medication spreading that killed. My nurse said its the PH levels in the medication that my body doesn't like/cant handle. Does anyone know anything more about this? I am so new to all of this! I haven't even been diagnosed a year yet, my anniversary is on Feb 1st!! Thank you all so much! Looking forward to meeting some great people on here!!
 
Michaelagraham, the first four shots killed me, I made my daughter go and learn because I am a needle freak, I almost knocked the first one in my leg out of her hand. I had lost almost 30 lbs at that time (may). I have now gained my weight back and the shots while still not enjoyable, are not as bad. I NEVER put them in my legs, that hurt worse than my stomach. I did read on here where people numbed the area with some ice first, and while the poke was less, I felt the medicine much more and it left a major purple spot on my stomach for days. I will not be doing that again.
It gets more tolerable, and if it helps you anything like it has helped me, there will be dread the day of, but in the end, I can eat!
 
Titanette said:
Michaelagraham, the first four shots killed me, I made my daughter go and learn because I am a needle freak, I almost knocked the first one in my leg out of her hand. I had lost almost 30 lbs at that time (may). I have now gained my weight back and the shots while still not enjoyable, are not as bad. I NEVER put them in my legs, that hurt worse than my stomach. I did read on here where people numbed the area with some ice first, and while the poke was less, I felt the medicine much more and it left a major purple spot on my stomach for days. I will not be doing that again.
It gets more tolerable, and if it helps you anything like it has helped me, there will be dread the day of, but in the end, I can eat!
Click to expand...

oh really? i heard that it hurt more where you have less fat, so thats why they chose my legs.. but maybe my next two injections ill try one on my stomach and one on my leg to compare.. I know what you mean, I was ready to punch my nurse.. I think I might have broken her ear drum..ooops haha but i tired numbing the area after my first injection and i found that it wasnt much of a difference.. i even took them out a couple of hours before being injected because i read on here that it hurts if its cold.. but i guess my body just reacts to the medication! thanks for the reply though!! im glad im not alone!
 
Welcome michaelagraham! Sorry to hear about the pain you experienced with the loading dose. It does sound like your body has a stronger reaction than most, since you tried all the "tricks" (letting the medication warm up, icing the area, choosing a fattier area) and they don't seem to work. I've never heard the pH reason before (i.e. that the pain is caused by intolerance of the pH of the Humira), has anyone else? I've heard a few people on the board say that they started to experience increasing pain after sustained Humira usage; I wonder if this could be related to the pH factor - for example, does the Humira start hurting more because a person's pH has changed?

On the bright side, keep in mind that your next dose will only be 2 shots, and then only 1 shot on future doses. For me, the loading dose didn't hurt too much, but the psychological stress of taking 4 shots in one sitting was horrible. I sat there for a long time before I could bring myself to do shots 3 and 4.

I hope Humira works well for you and gets the disease under control. If it works well, you may not mind the trade-off of the temporary pain every 2 weeks. Good luck!
 
I am a newbie to Humira as well and had my initial doses recently (4+2).
While the first dosage of 4 shots did hurt a lot more than I was prepared for, the next 2 weren't as bad. I did the 2 doses by trying the room temp way and do believe that is the reason for a relatively lesser pain experience.

However, I would like to point out that the Humira nurse I spoke to recently, said that they recommend injecting at a cooler temperature (i.e. injecting right after taking out of the refrigerator) instead. Wonder if it does make a difference to the efficacy of the medicine. Any feedback from anyone? Thanks.
 
Hi Idlebrain

I find that if I leave it out for 30 mins or so that it burns less!!! I have been on it for 6 months was doing good but they DC it lasst night at the ER!!!!! Good luck!!!!!
 
michaelagraham said:
oh really? i heard that it hurt more where you have less fat, so thats why they chose my legs.. but maybe my next two injections ill try one on my stomach and one on my leg to compare.. I know what you mean, I was ready to punch my nurse.. I think I might have broken her ear drum..ooops haha but i tired numbing the area after my first injection and i found that it wasnt much of a difference.. i even took them out a couple of hours before being injected because i read on here that it hurts if its cold.. but i guess my body just reacts to the medication! thanks for the reply though!! im glad im not alone!
Click to expand...

I learned a trick many years ago when giving my dog her shots for diabetes, thump/flick the area about 5-6 times, like you are flicking your skin. The pain from the flicking/thumping will make your brain believe that something is trying to cause you pain and will create a numbing effect. I have tried that with my Humira shots, and it worked a little bit more than without doing it.

Sandi
 
How bad was your asthma before? This is good to know. I have mild asthma that comes around occasionally in the fall or after a bad cold with about 3 -4 months of coughing.
 
This was my second attack that happened right after taking the shot, but this attack put me in the hospital. My asthma was very controlled to the point where I was only taking a maintenance inhaler and allergy shots. Be very very careful about starting Humira if you have any type of asthma!
 
Thanks Lodge Lady .... BIG note to self on that one!!!! My asthma doesn't seem to be the chest tightening kind but the coughing kind. I carry an asthma inhaler because the body is unpredictable and it does help on a coughing spasm but I could go years without using it. I am planing to get a pneumonia shot at some point because having asthma makes you susceptible to upper respiratory issues.....just like it does smokers. Whenever anything is going around....it's me and the smokers in the office who are coughing!!! I hope that never changes because the constricted airway type must be very scary. Thank you for sharing with me.
 
Lodgelady thanks for sharing. I haven't had bad asthma in years. I used to have to go in for breathing treatments all the time. I take 10mg singular daily and that is all. The other day I swear it felt like an elephant was on my chest and I thought maybe it was anxiety but now it feels I may be getting something in my chest. Ugh so of course I'm freaked out. I don't take my inhaler bec I've developed a fear of heart palpitations. Over the course of my diagnosis I kept getting terrible chest pains and that caused anxiety so many ER trips where they found nothing and I felt like a basket case so now I'm trying to not be so sensitive about everything but still keep an eye. A difficult balance! Been on humira since dec 18.
 
It was so obvious this last shot. It's like my whole immune system got sucked out 24 hrs later. I am usually not a wheezer but a sweller and cougher. So prednisone is the drug I go on for asthma along with antibiotics. But this episode my lungs were junky. Crap rolling around audible raspy wheezing. It's like I was drowning in phlem. Like I said I never present that way with my asthma, more dry cough and swelling.

I am stopping the Humira. Staying on Pentasa but now I'm being referred to U of MD Crohns and Colitis disease center. My doc wants to get the experts out to really pinpoint the reason for my inflammation, and recommend to him a treatment plan. I love this doctor but understand he doesn't have all the answers. I am very lucky to have such medical facilities so close to home.

Oh, in 3 weeks I have to get my gallbladder out! :(
 
Hungry said:
I started on it in June 2010. It took a few months and now I feel like I don't even have crohns. I can eat and drink whatever i like. My weight is back to pre-crohns and I feel healthy. I still go to the toilet more oftan than what was normal to me before. But it's not really a problem.

but as crohns if different for everyone, I can on advise you give it a chance.
Click to expand...
 
LodgeLady said:
It was so obvious this last shot.

Oh, in 3 weeks I have to get my gallbladder out! :(
Click to expand...

I had my gallbladder out - surgeon specialized in minimally invasive surgery --- I had almost no pain even though a fairly large scar from the simultaneous bowel resection. He did most thru laparoscopy. I highly recommend that -- didn't need one pain killer afterwards. :ylol: Best wishes for your fast recovery!
 
HI everyone,

Finally am looking to start on Humira. I've been through the proverbial ringer between my blood work, colonoscopy, surgeries for fistula, etc. However, after a skin test and chest x-ray, I am confirmed tb negative after a skin test and chest x-ray. So the doctor called today and said he is attempting to get approval to start Humira.

So the short of this long form question is, how difficult is it to get approval for Humira? I have had perirectabl abscess, fistula x2, seton placement, and colonoscopy showing inflammation at the terminal ileum. Any thoughts?
 
I had no issues following Dx -- they sent it to me immediately. Would like to know how you are doing on it as you progress. Keep us informed!! Good luck!
 
@ey218: Getting approval should not be a big concern. Obviously, it is not something that a Doctor would prescribe without due diligence. Looks like they have all the back up info they need to get approved.

I recently got started on Humira as well (was on Remicade earlier) and do feel that it is starting to make a positive difference. Good luck.
 
I've been on Humira for over a year now and overall doing well. Back in December I was placed on prednisone for 9 day to reduce inflammation. That's been about it.

Good Luck
 
hi everyone. I read this forum on and off when I had questions and I find it very helpful. as from yesterday im on humira(I've got Crohn's for 6 years now, small bowel resection), we've tried everything and this was my last resort. I don't find it painful at all :) my pain threshold must be very high, I dealt with excruciating pain till surgery last year. even my surgeon was surprised .
anyway, I thought I should introduce myself since im stalking and maybe I can help others with my experiences also. :)
 
I am beginning to worry that Humira is not going to work.

Been on it for 6 weeks now and no real improvement. Should I be giving it longer?
 
I've heard it takes a while and I'm thinking I read 3 months somewhere. I'm sure someone more knowledgeable and familiar who taking it will respond.
 
Welcome 3kiddiesmumma!! I talked to my Rheum nurse yesterday and asked her about Humira and she said her patients are doing really well on it and no one has complained of painful injection sites.
 
Sandi Creek going to try that with the next shot. I always do that with my horses but never thought to do it with my son. Does it minimize the post injection stinging?
 
Zoodles said:
Sandi Creek going to try that with the next shot. I always do that with my horses but never thought to do it with my son. Does it minimize the post injection stinging?
Click to expand...

Zoodles, I feel that it helps with the sting of the needle going in, but the burn that I experienced originally when I started taking humira doesn't affect me anymore after reading some of the other posts and trying their methods.
 
i have been told not to squeeze any skin/fat. just hold the pen against my skin and stretch the skin with the thumb and finger. had no discomfort at all, stings a bit when the medicine goes into the body but the needle doesn't.
 
hi. just a question. does anyone have any pain still, with humira I mean? and any headaches and fatigue still going on?
how long it takes to feel better?
thank you
 
Wish I knew

I have been on it for 2 months and I have no improvement

I have also had no side effects which I hope is a good thing and I am trying to stay positive.
 
the bloating and discomfort seems worse, pain ( not excruciating but still pain), headache and tired like hell. I will take out some foods from my diet and see if it makes any difference.
 
Hello everyone. I need some serious advice. I am starting AmeriCorps (a 10 month service) in a couple weeks. We travel a lot for this program. I can always get my shot wherever I am. That is one thing they guarantee to me. The problem is keeping the numerous shots at the proper temperature for extended periods of time. I should have access to a refrigerator when we arrive at places, but other than that it is up to me. A cooler is a possibility. The problem is that ice packs are not ideal because we may be driving for 20 hours and I would be afraid that they would melt before then. How about ice? But then I would be afraid that it would get too cold. Anyway, any advice at all would help.
 
Ssvarner said:
Hello everyone. I need some serious advice. I am starting AmeriCorps (a 10 month service) in a couple weeks. We travel a lot for this program. I can always get my shot wherever I am. That is one thing they guarantee to me. The problem is keeping the numerous shots at the proper temperature for extended periods of time. I should have access to a refrigerator when we arrive at places, but other than that it is up to me. A cooler is a possibility. The problem is that ice packs are not ideal because we may be driving for 20 hours and I would be afraid that they would melt before then. How about ice? But then I would be afraid that it would get too cold. Anyway, any advice at all would help.
Click to expand...

Seriously I would put off starting Humira in this situation. First it may take some time before you know if it's even going to work. Secondly, in the beginning there is a lot of fatigue. Keeping the syringes in an absolute cool environment is paramount. Given all the uncertainties I would wait the 10 months before starting it.
 
I wouldn't start the shots until you are certain you can comply with necessities for the medicine care. Either that -- or don't go to Americacorps due to medical issues.
 
Ssvarner, I've given a lot of consideration to traveling with Humira as well - though as of yet I have not had to do it. I like to travel internationally for weeks at a time but am very concerned about temperature control (also a little concerned about problems getting medication through customs/security, but possibly a doctor's letter would suffice). If you use the search function on this site, you'll be able to find a few threads on this specific topic.

I've read that people have traveled with Humira using small battery powered coolers, or they have used insulated bags filled with ice packs - and on flights they ask the flight crew to put some ice packs in the freezer so that they can swap out packs as they melt (this latter method, assuming you are on a flight, can probably last you until you get to your destination where hopefully you'll have a refrigerator).
 
LodgeLady said:
Seriously I would put off starting Humira in this situation. First it may take some time before you know if it's even going to work. Secondly, in the beginning there is a lot of fatigue. Keeping the syringes in an absolute cool environment is paramount. Given all the uncertainties I would wait the 10 months before starting it.
Click to expand...

I'm sorry for the confusion. I have been on Humira for 3 years. There is no option to stop the medication nor am I willing to resign at AmeriCorps.
 
scoutfinch said:
Ssvarner, I've given a lot of consideration to traveling with Humira as well - though as of yet I have not had to do it. I like to travel internationally for weeks at a time but am very concerned about temperature control (also a little concerned about problems getting medication through customs/security, but possibly a doctor's letter would suffice). If you use the search function on this site, you'll be able to find a few threads on this specific topic.

I've read that people have traveled with Humira using small battery powered coolers, or they have used insulated bags filled with ice packs - and on flights they ask the flight crew to put some ice packs in the freezer so that they can swap out packs as they melt (this latter method, assuming you are on a flight, can probably last you until you get to your destination where hopefully you'll have a refrigerator).
Click to expand...

The problem with the small battery powered cooler is that I will have a 3 months supply of Humira to begin the trip
 
I'm reporting in after 7 weeks on Humira. The headaches went away after 4 weeks. I still have fatigue, heavy fatigue for two days after the shot. I have had severe joint pain which I understand is rare but does happen. I just had a shot on Tuesday and so far my joints are only stiff, not painful. Keeping fingers crossed that it wont get as painful as the last two week cycle. In the first 4 weeks of treatment my intestinal symptoms abated (loading dose was most helpful for those symptoms) but the past 3 weeks have been a struggle. I pulled sweet potato off my menu and symptoms are improving. Too bad! It was a safe food that I loved.

Ssvarner, we own a battery operated cooler that we use for traveling with medication and it works very well. There are some models that are better than others. Don't know if that will help in your situation. I had one shot misfire and after many phone calls, I was directed to call Abbvie. They were extremely helpful! They overnighted me a replacement plus and extra shot. Based on my experience, I would suggest you call them and ask their tech about what they suggest. Best of luck to you!!
 
Hi all!
New to the group- starting on humira in a few weeks...have a rectal abscess that needs to be under control. am currently on imuran, but not putting me into remission, so going to try to add humira
 
Michelley said:
I'm reporting in after 7 weeks on Humira. The headaches went away after 4 weeks. I still have fatigue, heavy fatigue for two days after the shot. I have had severe joint pain which I understand is rare but does happen. I just had a shot on Tuesday and so far my joints are only stiff, not painful. Keeping fingers crossed that it wont get as painful as the last two week cycle. In the first 4 weeks of treatment my intestinal symptoms abated (loading dose was most helpful for those symptoms) but the past 3 weeks have been a struggle. I pulled sweet potato off my menu and symptoms are improving. Too bad! It was a safe food that I loved.

Ssvarner, we own a battery operated cooler that we use for traveling with medication and it works very well. There are some models that are better than others. Don't know if that will help in your situation. I had one shot misfire and after many phone calls, I was directed to call Abbvie. They were extremely helpful! They overnighted me a replacement plus and extra shot. Based on my experience, I would suggest you call them and ask their tech about what they suggest. Best of luck to you!!
Click to expand...



glad (or should I say not so glad :) ) im not the only one with headaches.
you gave me hope it will subside. the bloating is the most that bothers me. as from Monday im gonna take out foods too, see if it helps.
 
3kiddiesmumma - This week was the best yet as far as side effects. The only side effect since my shot on Tuesday is some fatigue. I feel some headache type pressure but certainly not a headache! The horrible headaches have really cleared up! The bloating is improved a lot this week too. Paying attention to food triggers is making a big differnce for me. I had a breakthrough this week with adding millet and quinoa (gluten free grains) that I soaked overnight in apple cider vinegar (breaks down chemicals known to be gut irritants). I am so happy to finally enjoy some grain after nearly two years off it. My motto is "stay the course and keep up the hope!!!" *And pay attention to my guts!! lol
 
Joining the club.
I had my first shots on Wednesday. Wednesday night I had headache and pressure/pain behind my eyes.

Before the shots I was/am on 25/30 Pred but I was getting quite a lot of stomach pain even when eating my safe food :(. CRP was at 77. This seems to fluctuate a lot, anywhere from 30-114.

I'm really hoping this new drug helps me, I was feeling so down this week because I got the impression if I ate my safe food I wouldn't get any pain.

New to crohns (symptoms started in Sep 2013, diagnosed Oct 2013)
 
@Jag23: I must say it was a relatively quick diagnosis. It typically takes months, if not longer, before one is conclusively diagnosed.

I have been prescribed Humira recently too and see considerable improvement. Wish you well.
 
idlebrain said:
@Jag23: I must say it was a relatively quick diagnosis. It typically takes months, if not longer, before one is conclusively diagnosed.

I have been prescribed Humira recently too and see considerable improvement. Wish you well.
Click to expand...

I was in hospital with suspected appendicitis and from there I had a camera OP and then CT scan and then a colonoscopy confirmed crohns. Since then my GI has said I may have had crohns around 2 years due to my weight loss but my main symptoms only started in September.

I wish you well too, so far I have seen an improvement but it's difficult to tell yet, when my Pred is lower I will then know because I've never gone lower than 4 tablets without my pain increasing a lot
 
I am looking for a portable electronic medical cooler for travel with 2 or 3 humira injections. Does anyone have any advice on a brand or where to get it?
 
Hello everyone, I was searching on the internet about Crohn`s and found this forum. My Name is Rafael Valente, I`m from Rio de Janeiro/ Brazil. I take humira shots justs by myself ( 15/15 days ) since 2009 and not a single side effects, just some small pain in the injection area for 3 minutes in the bely.

My Crohn`s started in 2004 and only is 2006 I was able to certify what desease I`ve have. From 2006 until 2009 I lost around 70 Pounds, and more than 10 times in emergency. After start the Humira, in 6 months I got back the weight I`ve lost and I participate in Abbott Health check program in Brazil to see the efficiency of their product.

By the way, the success rate of humira appears to be linked with European Strains ( My Father is Italian and Mother is from France ), Brazilian Mix appears to not have a great success rate with Adalimumab, as Brazilians appears to create anti-bodies for Adalimumab.

The doctor just request that I avoid Alcoohol, Smoke ( I`ve quit in Dec 2012 ) and spicey foods.

Since Treatment with humira Starts, never more needed to go to the ER...

So, anything that I can help from Brazil, please let me Know!

Check on Youtube => /watch?v=c6jzPISp0Ko

Sorry for my english...

Best Regards!!!
 
Last edited:
Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
 
Titanette said:
Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
Click to expand...

Yes. I have been on it ever since I was diagnosed. As far as I know, it is not uncommon to be prescribed. Typically used to control inflammation in the large intestine (UC) but can also be effective in the small intestine with proper dosage.

Don't worry too much. If you are comfortable with your Doctor and her expertise, I would go ahead and take it. May be ask her for the specific reason why she thinks you should start taking it, if you haven't already.
 
I had so many crap doctors in the process of trying to figure out what the heck was wrong with me that I no longer trust any of them. I feel like they just want to pump you up with a bunch of crap. All my blood work came back good minus the inflamation, but it was lower than the blood work just before starting Humira.

Thanks for responding! It looks as though she is not giving me the option, her response was where do I call in.
 
I have really lost faith with these doctors. Switched to a new GI, says I have inflammation in TE. Puts me on gut wrenching antibiotics, 4 months prednisone and Humira. Guess what? I have a non functioning gallbladder that could be the root cause of all my problems. Question is why didn't he r/o GB a year ago?

Yep I feel they just want to pump you full of drugs. I took myself of of ALL of it and want to see how I feel after my surgery on Thursday. Sorry to get OT!
 
@Titanette: I hear you. I recently changed my GI and I am cursing myself for not having done that much earlier despite being less than pleased with my previous doctor all along. I guess I was afraid of change and I was already overwhelmed with the diagnosis, prescriptions, and Remicade infusions that quickly followed for more than an year. I was so frustrated one day and researched online and hesitantly setup an appointment with a different doctor. I am glad I did and he recommended Humira instead which seems to be helping me a heck lot better than Remicade. More than anything, I feel like I can trust his judgement and am more comfortable asking questions and discussing options.

Bottom line, if you are unsure, don't hesitate to get a second opinion and in the process, may be you will find a Doctor who is a better fit to your needs and condition. I understand how unappealing that is, but it is worth the effort because of the chronic nature of the condition.
 
hi. I need to do my shots(x2) today and I woke up with tonsillitis. shall I do the shots or call the doctor? I need antibiotics every time I get tonsillitis and with humira might not be a good idea.
 
Don't take the shots! Once I took it with a mild cold on board and it ended up going into full blown bronchitis and laryngitis.
 
LodgeLady...
Everyone responds differently. I have taken the shots many times with colds. Everyone responds differently. I have asked many times and my doc has always said go ahead. He cites the documentation and his experience. You seem to respond very differently to the drug that many others (asthma attacks, bronchitis, etc). It is fine to share your experiences, but I would be care on giving out such direct advice based on a small sample set.
 
mrjohns2 said:
LodgeLady...
Everyone responds differently. I have taken the shots many times with colds. Everyone responds differently. I have asked many times and my doc has always said go ahead. He cites the documentation and his experience. You seem to respond very differently to the drug that many others (asthma attacks, bronchitis, etc). It is fine to share your experiences, but I would be care on giving out such direct advice based on a small sample set.
Click to expand...

Glad you have no issues. I would want to know ALL reactions. They are not all good.
 
I agree they are not all good. One should be aware of what can happen, but based on the data. What needs to be taken into consideration is advice from one's doctor (assuming you have a knowledgeable doctor you can trust). The biggest concerns are TB, HepB, certain fungal infections (I was told it was a certain fungi found in dry arid regions), and not necessarily respiratory or flu type infections. That is, unless you are prone to run away infections and then, maybe this type of treatment isn't for that person. Respiratory infections were reported in 17% vs 13% with placebo. Again, your experience may be different and this type of treatment might not be for you. I, though, wouldn't advise anyone to not take a treatment. It also depends on what you are treating. Is the "cure" worse than the "disease". I would take a few extra colds over my Crohn's and Psoriasis.
 
I called him and he advised to wait a few days then do the shot. im not taking antibiotics, hopefully it will ease in 2 days and do the shot. since the first 4 shots I had ear and a fingernail infection! now tonsillitis :) happy days here
 
3kiddiesmumma said:
I called him and he advised to wait a few days then do the shot. im not taking antibiotics, hopefully it will ease in 2 days and do the shot. since the first 4 shots I had ear and a fingernail infection! now tonsillitis :) happy days here
Click to expand...

I'm sorry you're having such a tough time. I have been taking Humira since December and I can feel my body try to come down with something for a day or toe and then luckily so far... Fight it off.

Hang in there and I hope it helps the crohns!
 
Ckoenig said:
I'm sorry you're having such a tough time. I have been taking Humira since December and I can feel my body try to come down with something for a day or toe and then luckily so far... Fight it off.

Hang in there and I hope it helps the crohns!
Click to expand...

Thx Ckoenig.
 
Joining the Humira club this week! After ten months of remission (maintaining on just pentasa) my body decided to rebel and my Crohn's is worse then ever. So anxious to get started. I'm a little nervous because my liver is already on the fritz, but it seems like any treatment option is sure to kill the liver. I'm going to be doing bi-weekly liver blood tests which should be interesting.
 
DS has been on humira for almost a year now and remicade before that- he has had multiple ear infections as well as strep throat ( but he was 8 -10 years old so normal for a kid).
He has always been able to get his shout as long as he was on an abx and fever free for over 24 hours.


Hope your tonsillitis feels better.


The only time we delayed a few days was due to having his tonsils removed. ;)
 
Need help!!

Hi all,

I haven't been on here for a while but really need some help!!! I've been on Humira for 3 years now (which I've put on so much weight :depressed: )
I already have one child but I got Crohns when I was pregnant but was not on medication. I am looking to have another child and wanted to know if anyone has fallen pregnant on Humira? And if the baby was ok I don't mind myself suffering but I do not want me child to. I'm a little bit worried!!

Xx
 
my little penguin said:
DS has been on humira for almost a year now and remicade before that- he has had multiple ear infections as well as strep throat ( but he was 8 -10 years old so normal for a kid).
He has always been able to get his shout as long as he was on an abx and fever free for over 24 hours.


Hope your tonsillitis feels better.


The only time we delayed a few days was due to having his tonsils removed. ;)
Click to expand...

I delayed only one day as the doctor said, I used only home remedies and worked. didn't feel any worse after I took my shot and tonsillitis was gone after. so all good :)
 
Faye Faye xx said:
Hi all,

I haven't been on here for a while but really need some help!!! I've been on Humira for 3 years now (which I've put on so much weight :depressed: )
I already have one child but I got Crohns when I was pregnant but was not on medication. I am looking to have another child and wanted to know if anyone has fallen pregnant on Humira? And if the baby was ok I don't mind myself suffering but I do not want me child to. I'm a little bit worried!!

Xx
Click to expand...
YEP! I had a beautiful boy on Remicade and a gorgeous girl on Humira. Both very healthy. The only restriction I had was to stop 3rd trimester and during breastfeeding.

GOOD LUCK!
 
Titanette said:
Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
Click to expand...

I have been on Lialda in the past, and it was recommended to me just for stool forming. I don't see any problems with it, other than having to swallow a few more pills a day, and the monthly cost. There doesn't appear to be any health issues with this drug.
 
Thanks for that info smack116. After reading all the info on it I do not feel it is something I have to have to, at least right now. I let my doctor know how I felt and she has now backed up some and said I do not have to do it at this time.

I do not think these doctors understand the cost of things.
 
Hello everyone. Well after 4 weeks of fighting with my new insurance company, I finally got my Humira today. Sickening as this sounds I was jumping up and down with joy. I started in October 2013, stopped in November for 2 rounds, started again in late December, Stopped early January due to insurance company denying me and then refusing to reopen the case after it was appealed (doc had to order all over again). Today I finally get it and lo and behold, I develop a cold sore.

My question(s) are to anyone/everyone is, do you have cold sores since being diagnosed with crohn's? I had never had a cold sore until I was diagnosed with crohn's, and about two weeks ago, I developed canker sores. Any relation? I realize that canker and cold sores are completely different, but I find it odd that while off of Humira (and feeling crappy,) I get the two things I never had before my disease.
 
Humira is an immunosuppressant . Your body may have fought off these infections in the past. Now on Humira your body will not fight off illness as readily as before. Probably explains the occurance of these new sores.
 
ECang said:
Im starting Humira today! should i do legs or stomach? i think i might have my fiance inject it for me because I am a little scared of needles lol. Any side effects i should expect?
Click to expand...

I do it in my stomach - just took it tonight. Have been on it for about a year - it has really helped me with the foods I can eat and the pain. I take it in my stomach, after freezing the skin with one of those blue ice packs. Then I use the alcohol swab and the do the shot. I would try to do it yourself - I hate needles and it really is not that bad. I have the pen so you can't see the needle - it looks like a magic marker! The whole thing takes about 10 seconds. Only the last couple seconds hurt. Then I put a bandaid on it in case there is a little bit of bleeding. Let us know how it goes.
 
This has probably been answered in previous pages, but, is swelling/redness/itchiness at the injection site a concern? I've been on Humira once a week since November, but the last three injections I've gotten that reaction every time. Is it just a common side effect, or is it something I should pay more attention to?

I see my GI in a week or two so I'll probably mention it to him then because I'm terrified of building up a resistance to another biologic... :(
 
Reaction at the injection site is the most common side effect. That's not to say it isn't something you should be worried about. Talk to your doc.
 
theOcean said:
This has probably been answered in previous pages, but, is swelling/redness/itchiness at the injection site a concern? I've been on Humira once a week since November, but the last three injections I've gotten that reaction every time. Is it just a common side effect, or is it something I should pay more attention to?

I see my GI in a week or two so I'll probably mention it to him then because I'm terrified of building up a resistance to another biologic... :(
Click to expand...

I started getting the red, swollen, itchiness a the injection site after about 3 or 4 shots. Initially the itching was so intense that I had to use some cortisone cream for about 3 days. I also made sure to take an antihistamine the day of my injection. Gradually the itching stopped but it was just red and swollen and then suddenly, after 8 months, the injection site reaction stopped completely. I don't take the antihistamine anymore either. My GI doc did not seem to be worried about it but I would mention it to your doc when you seem him next.
 
Deborah said:
I do it in my stomach - just took it tonight. Have been on it for about a year - it has really helped me with the foods I can eat and the pain. I take it in my stomach, after freezing the skin with one of those blue ice packs. Then I use the alcohol swab and the do the shot. I would try to do it yourself - I hate needles and it really is not that bad. I have the pen so you can't see the needle - it looks like a magic marker! The whole thing takes about 10 seconds. Only the last couple seconds hurt. Then I put a bandaid on it in case there is a little bit of bleeding. Let us know how it goes.
Click to expand...

I don my stomach too and really don't bother me at all. no swabs(just have a shower before) and if I had a drop of blood it stopped straight away. I got confused today and had my shot and should be next week :( im so embarrassed to call my doc, hes lovely but its such a stupid mistake. I put it in my phone to remind me in the future. anyone did this before?

just wanted to show you a link a friend sent me today. do you believe this is true? I have doubts but im torn about it too


http://quirkycooking.blogspot.com.au/2014/01/guest-post-recovering-from-crohns.html?m=1
 
I don't know. It seems like a big push for her new product/business. I know everyone responds differently BUT if this product was all that we'd be hearing about it a lot more.

I am all about diet right now and less about medication. Hope I can find the right mix.
 
I am new to the forum. I started taking Humira in November 2012. It worked for about 2 months and has stopped working. The doctor added Methotrexate and it is still not working. I still have painful diarrhea. What do I do now?
 

Similar threads

K
So confused after apparent relapse
Replies
6
Views
2K
Opieshuffle13
O
M
Humira/high risk group?
Replies
3
Views
2K
my little penguin
my little penguin
Papantoine
Neglect?
Replies
0
Views
273
Papantoine
Papantoine
A
Superstition and Anxiety
Replies
12
Views
2K
Aituk7
A
Soryan
PARADIGM SHIFT NEEDED!!!
Replies
1
Views
1K
kiny
kiny

Latest posts

Back
Top