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personally i dont think the risk of infection is that high. crohns is caused by overactive immune system, just clean up, take care of yourself and get a flu shot. my doctor also said the risk of cancer increases by like 1%
 
I am newly diagnosed as well and was scared when my only option was to be on Humira. I have been on it a year and have not gotten sick. I do take vitamins every day, and I drink lots of water. Get your flu shot, also a pneumonia shot. I am a single mom and I feel like I never stop, and even that has not affected me in easily getting sick on Humira. I can eat, I do not miss work anymore, I carry hand sanitizer, and wash my hands frequently. Taking precautions never hurts.

The freedom I have to live now far out ways the risks at this point.
 
With risk of infection, I've tended to think of it this way: with an overactive immune system, the Humira will make me have a normal immune system. So, really, I'm going to the "normal" risk of infection. That said, I've also taken more care about washing my hands, using hand sanitizer when I can't, and being aware of things in a preventive way.

As far as risk of cancer or other nasty things...in my case, my Crohn's was severe enough that I'm willing to risk something bad down the road to be able to function now, and not need major surgery. The really bad things that can happen are pretty rare, and keep hopeful that if something does go wrong for me, it will be far enough in the future that medicine will have advanced enough that it can treat it better by that time.

I had some benefit from prednisone, but it wasn't helping enough alone, and I found its side effects much more undesirable.
 
I've come to the conclusion that anything has to be better than prednisone. And the risks of things that are almost guaranteed with prednisone were pretty bad anyway. I have one doc having me get a pneumonia vaccine, and another paying real close attention to my thyroid antibodies. In general I believe it will come out as a win-win situation. Help the problems I am having now and maybe help some problems nobody seems to be able to fix. Plus I got a new talking pen that my six year old is eyeing as his new toy to play doctor with :)
 
wow thanks everyone this really makes me feel better about starting it and I agree that if it can help me get back to normal now its worth the risk in the future. sounds like it has helped you guys just cross your fingers it goes as well for me! :)
 
sarahh5397 said:
wow thanks everyone this really makes me feel better about starting it and I agree that if it can help me get back to normal now its worth the risk in the future. sounds like it has helped you guys just cross your fingers it goes as well for me! :)
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I have had some of the same concerns. They talk about some scary stuff associated with it. I just got approved from insurance today, now just waiting for it to get sent from some pharmacy. Any way let us know when you start and I will post when I start and we can compare. I just had to get a kick in the butt and a better attitude about it. We will be fine :)
 
I think mentioned this in my original post but I'm feeling better every day. I started Humira in May so it took a while to kick in. I cut back on wheat a week or so ago too so that's probably made a different at the same time. Yay!!
 
I just wanted to update: I posted a page or two back about having anxiety about giving myself my injections after being on Humira since last November (the anxiety just started this last month), and ordered some Emla (lidocaine) patches from my pharmacy. I put those on about an hour before my injection, and then had my SO administer my injection for the first time...

I was still pretty anxious about it, but I didn't look and he had watched me enough times and did it for me. I barely felt a thing and I'm so relieved. I'm so lucky I can count on him and that he's always been so great about my health and my medication.
 
yea please let us all know how it goes I am feeling a lot more positive since reading these posts. Honestly even some side effects have to be better than dealing with this on a daily basis. thanks for all the positive feed back.
 
sarahh5397 said:
yea please let us all know how it goes I am feeling a lot more positive since reading these posts. Honestly even some side effects have to be better than dealing with this on a daily basis. thanks for all the positive feed back.
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I just get a stuffy nose every once in awhile, but otherwise: no side-effects for me, and it's really helped! I'm sure you'll be fine.
 
I have a dear friend with crohns and I am worried about her. She took humira for a few months but then had a strange side effect. Everything she ate tasted like rancid food. Has been on antibiotics which helped for a few days but its back with a vengence. She is losing weight like crazy. Potassium low. She stopped humira but still has the taste thing going on. Went to the ER and they could not find a reason for her to be doing this, she was in tears. She is on antibiotics again. And I am praying this helps until she can get to another doctor. Her GI doc has no reason for this symptom. Has anyone had this happen and if you have how did you get rid of it? Treament? Thanks
 
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Yes, the only thing she is eating now that has any taste is tomatoes. So what I am understanding is that she is having a flare up from crohns and she just might have to ride it out?
 
She has been to a regular doc, they said bacterial infection,(2 weeks ago) she was on steroids and bacterial medicine, it got better for a few days then it turned and came back, quick. Went to the ER the other day and they cant find anything but a bladder infection, now she is on antibiotics. I am praying that this works so she can eat again.
 
I lost my taste and smell 3 yrs ago. But I was bleeding in my nose. I had sinus surgery in April. It stopped the bleeding and smell every once in a while. But they are usually connected, taste and smell. The ent said in my case it has to do with inflammation and because I had an autoimmune reaction after surgery. He believes it's all autoimmune. Prednisone did give it back for a week or so but it came right back after I stopped it.
 
the antibiotics can give a metallic taste as a side effect. maybe switch kinds? (im not a doctor) but make sure she is taking probiotics also, to balance the antibiotics.
 
Yes, I seem to do fine with meats @fissure2 I'm not totally gluten-free, just cutting back. I don't have a reason to think I'm gluten intolerant so I'm not cutting it completely.
 
its not gluten intolerance. i was told gluten is bad for anyone with autoimmune issues. it has to do with it being inflammatory. im still at the end of a flare so im wary of meats. I do eat the occasional donut or slice of pizza.
 
oh cool, i just met with a couple dieticians. the crohns website and doctors never mention that stuff tho. or carageenan - avoid carageenan. I read the IBD remission diet book, but im not totally convinced.
 
My doctor had me do an elimination diet back wards. Starting with what she new to be the most inflammatory. The rest had to with my system. As for meat I can only do chicken or fish anymore.
 
im doing something similar. fish is good, but i think chicken is risky. hard boiled eggs are bad, but scrambled are just fine. i would do anything for chili cheese fries :(
 
The two weird things I cant eat are oats and peanut butter. Who knows. I think it's just best to know how things affect you. My thinking is if everybody's disease was exactly the same they would all have trouble with the exact same things. They aren't and we don't.
 
oats have a lot of fiber, which irritattes, they are also grown near wheat, so make sure the package says gluten free oats. what kind of peanut butter? - skippy has vegetable oil added which is omega 6 fats and inflammatory. try a natural one, not roasted, no salt, no specks for peanut skins.
 
good oils to cook with are flax oil, (extra virgin) olive oil, (virgin) coconut oil, sesame oil, grapeseed oil, peanut oil.
 
try flax oil its loaded with omega 3's (anti-inflammatory). it has a slightly nutty taste. coco oil is all short chain fats, they are good but digested differently.
I love peanut butter, i eat it plain sometimes
 
It's actually a medium chain triglycerides (coconut oil). It's really good for you. So many oils change forms after cooking. But after cooling it goes back to its original form. That is what's wrong with most cooking oils today. A lot of the become toxic after heating, and then we put it in our bodies.
 
When it is cooked at certain temperature it breaks down and become harmful to you. If you cook with good coconut oil it changes into oil (clear and fluid) and then after it cools back into white and creamy. Kind of cool actually.
 
If you use organic of oils or extra virgin. But you have to believe in the manufacturers. Most will label things any way they can to get you to by them. Even some olive oils are really bad for you.
 
I have the medication now... I just need to take a trip to the GI doctor's office to have them show me how to do the loading dose.

Having some serious injection anxiety now... :pale:
 
Just breathe! It is not the greatest feeling, but it is also not unbearable. It goes faster than you think it will as well.

I also cook with coconut oil now and I will never go back. My biggest issues are red meat, vegetables, and berries (fruit). It does not matter how much I cook down vegetables, they are going to kill me. Oh, and I cannot eat anything breaded or salad. I miss salad a lot.
 
Good luck with your shot. Let us know how it goes. Salad and corn on the cob were two of my most favorite things I had to give up. I always had trouble with red meat. I think I have more trouble with melons than berries though
 
Got a call from my GI today, bloodresults show that I don't have enough humira in my body and some antibodies.. so doubling the dose, humira every week from now on, new tests in september.

Bit of a bummer, specially now that we're going on holiday for 3 1/2 weeks, and I need to keep it cold.. stocking up on icebags....
 
theOcean said:
Oh gosh! Good luck, Pusheen. I've been having weekly injections from the start -- they're not that bad, I promise. Hopefully it'll help!
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I'm more worried about the antibodies, any more of those and I will be taken of Humira..
Not that it would be so bad, cause antibodies mean it doesn't work anyway I presume... or wouldn't in the long run.
I'm on Imuran and pentasa as well, so hope that will keep things quiet.
 
Pusheen said:
I'm more worried about the antibodies, any more of those and I will be taken of Humira..

Not that it would be so bad, cause antibodies mean it doesn't work anyway I presume... or wouldn't in the long run.

I'm on Imuran and pentasa as well, so hope that will keep things quiet.
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Yeah... I had to stop Remicade because I had really high antibodies to it, and it didn't do anything for me. Hopefully that's not the case for you, and even if it is: I'm sure you can just try another biologic! Imuran and Pentasa in the meantime should hopefully tide you over, though.
 
Pentasa doesn't feel like it helps me at all. Seems like the prednisone does. I'm weening off of it since I have started humira. So far so good.
 
I stopped Pentasa entirely once my diagnosis was changed to Crohn's since it's not effective for a number of us. I know it personally didn't do a thing for me. Noticing any differences yet from being on Humira?
 
Pentasa worked great for me for the first 10 years I had crohns, but my sympts were much more milder then and I didn't have any narrowing or blockages back then either.
 
I really don't know if Pentasa is working, it is one of those things that everyone with Corhns gets here in Norway I feel...
I got it at the same time as the initial prednison.
Later they added Humira and another month later imurel.

Bloodtest for imurel came up with some questions, but could continue anyway and now Humira bloodtests came up with questions.
I'm a bit worried that I'll end up with prednison again, which just ruins me.. I get depressed and that makes me almost more ill than Crohns..
But for now we'll just go with double dose humira and test again in 6 weeks time.
 
Lam123 said:
Oh ok. I get it. That's what I have started in the last month aswell, paired up with Imuran.
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200 mg imuran here a day, 2g pentasa, humira every week and three more days with 2,5 mg prednison, almost done with this last little bitter pill... :)

Now two more days and we're going on a three and a half week camping holiday, with my bag with pills, cool-box with injection pens, and yoga ball for my exercises for my pinched sciatic nerve (caused by bad physical form and not enough general exercise because of Crohns and medication pluss wrong posture because of my bad knee).

and now that I will stop prednison, I can be operated on my arthritic knee in September!! (still not completely trusting my body to behave that long, and afraid another thing will come up to hinder the operation, which should have taken place in march)
 
We are so much alike! Lol! I am just tapering off prednisone. And I have sciatic nerve issues aswell!
What do u do for your sciatic nerve?
 
I think Humira has officially kicked in for me and I'm feeling normal! I'm testing out different foods, eating almost anything I want and feeling great. I've even had a few beers the past couple of nights (my parents had the kids, we went on a few dates) and haven't even felt so much as bloated. I was trying to cut wheat & corn but they aren't seeming to bother me anyway. I will continue to proceed with caution and likely still limit grains but not exclude. Yay!!
 
Well, I was going to go to the doc's office today, but I came down with a sore throat and decided to wait until Monday at least. Don't want to start the medication and end up with an infection I can't fight off...
 
Nancye50 said:
I think Humira has officially kicked in for me and I'm feeling normal! I'm testing out different foods, eating almost anything I want and feeling great. I've even had a few beers the past couple of nights (my parents had the kids, we went on a few dates) and haven't even felt so much as bloated. I was trying to cut wheat & corn but they aren't seeming to bother me anyway. I will continue to proceed with caution and likely still limit grains but not exclude. Yay!!
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how long have you been on humira??
 
Lam123 said:
We are so much alike! Lol! I am just tapering off prednisone. And I have sciatic nerve issues aswell!
What do u do for your sciatic nerve?
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Lam, So glad to get of the prednison, it might work good on the inflammation, but not on my person!
for the sciatic nerve, I get fysio, do my exercises and use tramadol at night and use paracetamol/tylenol during the day.
oh and I use icepacks both on the spine and lower on the nerve (calf) to calm it down.
Quite a bummer not being able to use nsaids with Crohns....
 
I love how when a flare sneaks up on you, my first question is what did I eat? But from experience I know its usually my stress levels :) still waiting on approval for humira :(
 
yeah im back to fish and rice. it wsa cool whip and a fruit smoothie.....dang didnt know to avoid fructose.
 
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Does anyone else on Humira get aching gums? Every once in a while my gums will throb, feeling like when there's a kernel or something stuck in them even though there isn't. Eventually it subsides, but it's weird. Sometimes it happens within a day or so of my injection, and sometimes it just happens out of the blue, like today--I'm due for my next pen on Tuesday (biweekly). Does anyone else experience this?
 
Does anyone experience aching gums with Humira? I occasionally have a throbbing pain in my gums similar to what it would feel like to have a corn kernel or something stuck in them, but it occurs without my eating anything. It doesn't seem to follow a pattern; sometimes it happens after my injection (biweekly), sometimes not, and sometimes it just randomly happens, like today. Has anyone else had this happen?
 
I'm very lucky not to be bothered by the self-injecting but I often use my iPod to motivate me etc and it might work in this situation. Perhaps you could listen to a song you really love while you do it to drown out the sound of the click.
 
mousesjca said:
Question for you all i'm kind of freaking out. I have been on humira for about 6 months and now have sore muscles in the legs, the left side of my neck and shoulder. Numbness in my hand if I carry anything. The other day was a sore throat and today I lost the vision for 5 min or so in my left eye. Has anyone ever had any side effects like this? Should I be heading to the hospital?
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Just giving you all an update. I have been taken off humira. I am currently waiting on test to see how much damage humira has done to my nerves. The neurologist suspects that I have some damage. Apparently this is a rare side effect to humira. I have been off humira for almost 11 weeks and still having issues. I was on no other medication so it was easy to pinpoint the issue. I had only been on Humira for only 7 months. Had I not gone to the hospital I would never had known. My GI is now giving me the option for Remicade but I am refusing. Remicade has the same rare side effect and I can not keep going through this. It is worse than the crohns disease itself.
 
I'm so sorry to hear that you were affected by Humira so badly! I'm not sure about the specifics of other biologics, but are there others less likely to cause this side-effect for you? I know Cimzia's a bit milder...
 
Joint pain in general for my daughter, but less on Humira than it was on Remicade. Sorry to hear you are having issues with it farm. Have you tried a topical ointment like A535?
 
starbynight said:
Do you think that stress cause most of the flares that you experience?
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I am pretty good about what I eat. Have been for 17 yrs. When I got diagnosed I was going thru one of the most stressful times of my life. My flares have way more to do with my stress levels than anything. My GI says that its one big circle. Stress breeds stress ( body or mind)
 
friendw/crohns67 said:
I have a dear friend with crohns and I am worried about her. She took humira for a few months but then had a strange side effect. Everything she ate tasted like rancid food. Has been on antibiotics which helped for a few days but its back with a vengence. She is losing weight like crazy. Potassium low. She stopped humira but still has the taste thing going on. Went to the ER and they could not find a reason for her to be doing this, she was in tears. She is on antibiotics again. And I am praying this helps until she can get to another doctor. Her GI doc has no reason for this symptom. Has anyone had this happen and if you have how did you get rid of it? Treament? Thanks
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I have never had this, but when I had surgery, everyone who came into my room wreaked of garlic. It was AWFUL. I had to hold my breath when they were checking my BP. I could smell it when they were standing in my door. I thought everyone on that floor must be eating asian food in the cafeteria but then my husband walked in. Same thing. It took several days for that to go away. Some say it was the anesthesia. Lately, things have been tasting fishy to me. Flax seeds and dried cranberries both yesterday. I take Krill oil....I don't know if that is doing it. But if it continues, I'm discontinuing the Krill oil. I also have issues with perfume. Most of them smell like Raid bug spray to me. A perfumist told me once it's very rare and it is genetic. The body is a strange thing. Everyone is different. I wish her well...maybe it will clear up as mine did.
 
My GI tells me that Crohn's is caused by a defective gene and that stress has nothing to do with it. However when I think back over my flair ups most could be associated with a high stress situation at the time I got sick. Has anyone else had a problem with flair ups and stress?
 
I don't think anyone really knows what causes it -- there are theories, but I think that's it. I know my flares were definitely triggered by stress, and once by taking medication which was bad for me which I didn't realize at the time.
 
From what I've read and what I've heard from my GI, there are multiple factors involved in causing Crohn's and triggering flares. Genetics are part of it--I have the mutation(s) associated with it. Stress has been present whenever I've had a flare, and has triggered lesser symptoms. Zyrtec has also caused a flare for me.

I read somewhere about one study that reported that stress supposedly does not actually cause flares and Crohn's symptoms. There was a little more detail that I forget now, but have to wonder how they could work that out. The majority of what I've come across says that stress is a factor.
 
Elektrikhd said:
Genetics are part of it--I have the mutation(s) associated with it. Stress has been present whenever I've had a flare, and has triggered lesser symptoms. Zyrtec has also caused a flare for me.
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How did you find out that you have the mutation(s). Was there a test involved?
 
i dont understand how stress could cause a flare. stress weakens the immune system that is causing the flares. and im curious like starby, is there a genetic test?
 
Back from my GI appointment. I am off all medication until further notice. The way he described it to me was because of the temporary loss of vision and the fact that they had said it was an optical migraine. I have to wait until all testing is done to ensure there is no nerve damage. He said like the neurologist the covering over the nerve's could be damaged and causes MS like symptoms. Loss of vision, tingling, tremors although I never noticed until I had to hold my hands out for the neurologist that I was even shaking. Sore joints and muscles etc. I just wanted to keep you all posted. The GI tells me that because of this I really don't have any options but pred and or surgery until this all gets sorted out. I don't mean for this post to scare anyone. It worked for me for the first few months. If anything at all I just wanted to let you all know if you notice anything out of the ordinary while taking biologics to see your GP and get it looked after right away. Was a lot for me to take in over the last few days but i'm still smiling and carrying on.
 
Yes, the Prometheus test. Exams and biopsies in my case were somewhat inconclusive, and they needed it to confirm that it was in fact Crohn's and not UC or perhaps by some slim chance something else.

As far as stress causing flares...sure, stress can lower immune response, but the Crohn's is also an inflammatory disease, and stress has many other effects on the body. It is at least linked to, probably an actual cause of inflammation in the body, so that's one aspect. An opportunistic infection can throw things off and, for some people, that can trigger a flare. Stress is also well documented to cause bowel problems, which I think for us can turn into flare situations.

Anecdotally, my best example is from last summer: I had moved about a month before, was packed up to pick up a friend at the airport on my way to a convention, and my car wouldn't start. I had to make some last minute plan changes, rent a car, found out on my way that had misplaced my friend's flight info...still got him ok. The convention itself, I was really excited about. I got a call the next day that my upcoming colonoscopy would have to be rescheduled because the facility wasn't in my insurance network. A bunch of stress items in a row, as well as some big stress fairly recently before. I had been staying on top of my medications and eating properly, but my bowels started acting funny...started getting cramps, D, and the next day it included blood. It was more of a "mini-flare," I got it under control with being extra-cautious about what I ate for about a week, but the only cause I could find was stress. I'm sure it wasn't a matter of overlooking something in my diet because I've knowingly "cheated" on food, and although I pay for it, it's not as bad as that.

Stress may not be as much of a factor for everyone, but if a doctor is telling you that it's not a factor at all...I guess I'd just pay close attention to my body and my experiences and if my experience runs contrary to that, I'd ask for an explanation of what's going on.
 
mousesjca said:
Back from my GI appointment. I am off all medication until further notice. The way he described it to me was because of the temporary loss of vision and the fact that they had said it was an optical migraine. I have to wait until all testing is done to ensure there is no nerve damage. He said like the neurologist the covering over the nerve's could be damaged and causes MS like symptoms. Loss of vision, tingling, tremors although I never noticed until I had to hold my hands out for the neurologist that I was even shaking. Sore joints and muscles etc. I just wanted to keep you all posted. The GI tells me that because of this I really don't have any options but pred and or surgery until this all gets sorted out. I don't mean for this post to scare anyone. It worked for me for the first few months. If anything at all I just wanted to let you all know if you notice anything out of the ordinary while taking biologics to see your GP and get it looked after right away. Was a lot for me to take in over the last few days but i'm still smiling and carrying on.
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I've actually had some similar, if less severe, symptoms in the last few months, but I also tested positive for Lyme disease. My symptoms also improved under antibiotic treatment. Have you been tested for Lyme, or have you been in wooded areas in the last...probably year, with symptoms like that? Might be worth looking into if there's not definitive proof that the Humira brought it on.

I have damage to my left optic nerve, and very slight peripheral vision loss, which my optometrist found, and she identified as glaucoma. But, I've also had extra pain in my left arm and leg since the Lyme onset. I'm waiting on MRI results, ordered as a precaution.
 
Elektrikhd said:
I've actually had some similar, if less severe, symptoms in the last few months, but I also tested positive for Lyme disease. My symptoms also improved under antibiotic treatment. Have you been tested for Lyme, or have you been in wooded areas in the last...probably year, with symptoms like that? Might be worth looking into if there's not definitive proof that the Humira brought it on.

I have damage to my left optic nerve, and very slight peripheral vision loss, which my optometrist found, and she identified as glaucoma. But, I've also had extra pain in my left arm and leg since the Lyme onset. I'm waiting on MRI results, ordered as a precaution.
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They have not tested me for Lyme disease but I have been booked for an MRI and 2 other tests. The muscle and joint pain did eventually stop after 11 weeks since I have been off Humira. I still shake and get wicked headaches. The eye specialist has said there was no damage and no peripheral vision loss and the pressure in my eyes has started to come down. I did have a CT done but the neurologist wants better pictures with the MRI. I will mention Lyme disease to them. I don't remember being in the woods but where I am there is deer everywhere so it's possible.
 
As far as I know the gene most associated with crohn's disease is hla-b27 (and AS) but there are other genes involved. If you read alot on crohn's disease or really any autoimmune disease there is usually an initial trigger. Kind of like you carry it around with you forever and then It's triggered. Mine was child birth, as far as my first horrible flare but I started having problems with my bowels when I was a kid. Started changing my diet when I was a teenager. But that's just me. But every doctor I have tells me how much stress plays a role in autoimmune diseases. My PCP has sjogren's and scleroderma. She is constantly on me about sleeping habits, food, exercise (without causing damage) and family stress.
 
autoimmune queen said:
If you read alot on crohn's disease or really any autoimmune disease there is usually an initial trigger. Kind of like you carry it around with you forever and then It's triggered. Mine was child birth,
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I have two cousins and both of them developed Crohn's disease during child birth. For the men it was some other stress related incident that triggered the disease. So far in our group only one who had medical problems as a child.
 
As far as the men I have known with it. Alot of them don't know they have it until they were having part of their intestines taken out. I've met a few women who found out after child birth. But two family members (by marriage) after menopause. With me I started out with bowel problems when I was 4 and then horrible canker sores in my mouth when I was 10. I still get those alot with my flares. I guess some of my worst problems are with my esophagus though. Tons of scarring and I have had it stretched 10 times in 17 yrs. The only thing I know for sure is everybody is different
 
Stephen McConnell said:
I know this is probably a redundant question but I haven't seen much.
Do others notice beig exhausted the day of the loading shots, and the day after?
I'm also assuming that with the next shots being only 2 then 1 every other week this will get better.
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Stephen, I am completely out hours later after giving my maintenance dose. My husband can't even move me from room to room it's like I pass out. It lasts usually until the next morning for me...like taking a strong sleeping med that I didn't know I took.
 

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