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At the risk of giving you false hopes, I took my 4 loading shots at the doctor's office so they could go over it with me. I think I may have even skipped breakfast that morning because I know we were still without power after a hurricane had come through, and food options were limited (I might be confusing it with the morning around then that I got bloodwork done, or maybe it was the same day). I was fine to drive back from there, stopped somewhere for something to eat. It was a 30 minute drive, and not the usual office I went to, so an unfamiliar location, too. I had my boyfriend with me just in case, but I had no trouble.
 
i just took my second loading dose today. ive had crohn's for a few months and the arthritis appeared this past week. I think it helps. my appetite came back the day after the first dose, and my other symptoms have been slowly going away, which is how the humira advocate said it would work. the nurse that gave me the shots said she has seen it work wonders for other people. still be careful of diet tho.
 
I've had crohn's for 17 yrs. I swore off a medicine after 2 yrs but back then they didn't have the meds they do now. I had periods where I was sick and well. I have been on asacol for 7 yrs off and on with prednisone but not long term. I was really bad about going to the doctor. Apparently now it's time to pay the piper, though. I got dx w/ hashimoto's 7 yrs ago and now ankylosing spondylitis just in the last month. I guess I just worry about all the cancers associated with humira. Because I don't need anything else on my plate right now. :)
 
autoimmune queen said:
I've had crohn's for 17 yrs. I swore off a medicine after 2 yrs but back then they didn't have the meds they do now. I had periods where I was sick and well. I have been on asacol for 7 yrs off and on with prednisone but not long term. I was really bad about going to the doctor. Apparently now it's time to pay the piper, though. I got dx w/ hashimoto's 7 yrs ago and now ankylosing spondylitis just in the last month. I guess I just worry about all the cancers associated with humira. Because I don't need anything else on my plate right now. :)
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I think cancers are actually more of a concern with immunosuppressants than biologics... but even then the chance of actually getting cancer is very low. I've been on biologics for over a year with no problems. Humira helped me instantly and has been great for me.
 
autoimmune queen said:
Thanks everybody. I guess I just need some reassurance :)
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My biggest problem is the spondylitis as well. It has been devastating to my quality of life. It almost feels like a nightmare. I keep waking up thinking its gone and then the pain slowly starts in my hips and buttocks again and lasts the whole day. I can barely do much. This year has been awful for me. I never knew Crohns can cause this much damage. Dealing with a lot of dark thoughts today. I miss being the fun and energetic mom I was.

How long have u had AS and how does it impact your life? I'm starting humira soon and it pains me to think that I now need meds to remain mobile and functioning!!!
 
jajabinks, i noticed you take glucosamine. make sure it is glucosamine SULFATE, not hydrochloride. you have to order it internationally.

my academics are also on hold, i know how you feel.
 
Ankylosing spondylitis started 13 yrs ago but it took this long to diagnose it. Partially my fault because back drs.just loaded me up on pain meds which then affected my crohn's ajd my head. So I stopped going. I had no idea they were connected until high dose prednisone took all my pain away. Its been along time and a lost career that didn't have to be so awful. But I am stubborn and hate medicine. I have a 19 year-old and a 6 year-old (really bad pregnancies). I am really tired of not being able to play with him. When it finally moved from my ankles to my entire foot and I was having trouble walking, I had had enough. But to be honest hashimoto's hasn't been a walk in the park either. Autoimmune diseases are the gifts that keep on giving. :(
 
Turn that emoji frown upside down @autoimmine queen ! I started Humira in May and it's kicking in and I feel so much better physically and emotionally!
 
It's different for everyone but the way I look at it is this:
I can be on Humira (started with Remicade, but it wore off too quickly, and they had to switch me, but it's what initially got things under control) and have some annoying symptoms, some mini-flares, but also occasionally cheat a little bit with certain food items and not pay for it too badly. Or, I can be in horrible pain, on the toilet every 2 hours to go bleed, and risk losing my colon entirely. That's the difference between where I was and where I am. Prednisone and Asacol while on a clear liquids diet in the hospital barely had an impact on me.
 
I am really hopeful it will work. I am just really tired of getting hit with diseases. I have three autoimmune diseases so far and no family history of any of them. I'm just having a miniature pity party for myself :( I am 40 and exhausted. This is the year I set out to get my body back it's just not working out the way I planned. Sorry for my rant. I just have to be More positive about new meds I guess :)
 
Sometimes that's how it goes, and it's ok to feel bad about it. I can relate, if not to having multiple autoimmune disease, having multiple health things going on at once. This has been a bad year for me, too, and I'm still struggling. Sounds like we're both going, "I'm not supposed to feel like this at this age!"

If you want someone to talk to, vent to, whatever, I'll be glad to listen.
 
My head is just screaming. I am doing everything in my power not to let anyone see it because when I fall apart my entire family falls apart. I am just not coping well right now. I am sure it will get better. Thanks for all of the support. I don't think anybody else(or group) would really understand :)
 
I started humira about 2 months ago (wow time flies). Best way I found to do it was have my girlfriend count to 3 and then immediately count to 10 so that I don't have to just do it and then have to count as well. She doesn't watch me do it, she just sits on the bed or couch and watches tv. She can't stand to look.
 
So I had the Humira Ambassador come to my house yesterday for my injection. After the huge welt I got on my leg after last time, my GI just wanted to insure I was doing it right.
I showed her where I did it last time and the picture that I took the day after. She said that it MIGHT have been because I did it too close to my knee where there isn't much fat. However, when I did it yesterday, she said I did it perfectly and I woke up today with a similar (but smaller and softer) welt where I did my injection.
I didn't have any benedryl this or last time, so next dose I am going to take that before and see if it makes a difference.
The lady said as long as it isn't an allergic reaction and instead an injection site reaction that there will probably be no issue of me staying on it, I just need to let my GI know.
 
Does humira help with your eyes and arthritis. I have uveitis. It gets bad at night but worse when I am stressed. Injections don't sound like alot of fun.
 
Well, it can. Humira weakens the immune systems ability to attack the body. The reason why you have uvetis is because your imune system has confused the cells in your eyes with the cells in your GI tract, so it started attacking those too. Are you on the steroid drops for that?
 
I was. I can only go on them every other month. Supposed to be on restasis. But my insurance won't approve them. They said there is no proof that the work :( it's funny I used to just feel like crap all of the time but in the last year I can see and feel the inflammation all over. I know I have to take it but I just start going over all of these medicines I have to take everyday to survive and adding one more that I will be stuck with, that I have to inject myself with seems to much.
 
Hello,

Let me first say that I'm incredibly sorry that everyone on this forum either is sick themselves or has a loved one that is. My most sincere and genuine condolences to all of you and I wish you all recovery at best and improvement or maintenence in the least. The reason I'm on this forum today is because I have a chance to participate in a 9 day paid clinical trial that pays $4,850 that involves Humira injections and I want to know if anyone here has any advice as to if it is too dangerous of a risk to take or if it is of
relatively low risk given such a short duration of treatment.

Thank you very much.

Gabriel
 
fissure2 said:
jajabinks, i noticed you take glucosamine. make sure it is glucosamine SULFATE, not hydrochloride. you have to order it internationally.

my academics are also on hold, i know how you feel.
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Thanks fissure. I believe it is sulfate but I will double check. I miss school n my campus dearly. :( wish my doctors warned me about these types of complications. Guess I was naive about this disease.
 
It's a study that calls for participants that take no meds and have no health problems. Their purpose is data of some kind and mine is money (being that I recently lost my job).
 
This still doesn't make any sense to me. Nine days? Are they giving you Humira for 9 days? At what dosage? Humira is usually 40mg every two weeks.
 
That would mean that you would be the control. But no guarantee that you would be on it or placebo other wise their data would be worthless. I have to go on it and am scared to be on it. But my fear stems from bad reactions to medications. I guess if I were healthy I wouldn't want to break that streak of luck. Because that's what it is, luck of the draw, genetically speaking :)
 
autoimmune queen said:
That would mean that you would be the control. But no guarantee that you would be on it or placebo other wise their data would be worthless. I have to go on it and am scared to be on it. But my fear stems from bad reactions to medications. I guess if I were healthy I wouldn't want to break that streak of luck. Because that's what it is, luck of the draw, genetically speaking :)
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It sure is luck! I haven't been lucky in all ways... I've been a musician for half my life but I've been depressed and anxious since I was 11. I may have the creative/unstable gene. I heard a psychologist say that depression was the worst disease you could get because basically it's the inability to enjoy a sunset. I'm not saying it's the "worst" but it definitely makes you want to die all the time. Lol
 
Ah now your speaking a language I understand. I was severely depressed with suicidal ideation for over twenty years. After years of therapy, medicine and nothing working, I found a really good doctor who tested my thyroid antibodies. Voila, hashimoto's for the better part of my life. Once they figured out I had to be on name brand synthroid over 20 yrs of depression gone in 10 days. My point is don't ever think your home free :) there are reasons for everything. Best of luck to you. I know you need the money but surely there are better ways to get it. Just my opinion :)
 
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Jajabinks said:
Thanks fissure. I believe it is sulfate but I will double check. I miss school n my campus dearly. :( wish my doctors warned me about these types of complications. Guess I was naive about this disease.
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yeah i miss being active, and regular human contact. Doctors try not to scare people. ask your doctor about humira, its working for my arthritis.
 
So over all does the good out weigh the bad with Humira I will probly be starting it in the next few weeks and I am kinda stressing about it from all the bad I've heard. I am so newly diagnosted and have only tryed steroids and they haven;t helped at all so guess this is the next step from what the doctor tells me.
 
well mainly the risks of random infections and chance of cancer. I've never liked going on any kind of medication before a year ago when this all started the most medication I ever took was for getting my wisdom teeth taken out and i could only stand taking those pain meds for about 3 days then just tylenol. I dont like that meds mess with emotions and nerves.
 
I was totally the same about meds. It had been years and years since I'd taken abx before diagnosis in Feb. So in regards to the infections, yes, that part sucks. Take precautions and vitamins and try to accept that risk. Regarding the cancer risk, that really freaked me out. I have three young kids. I read all the pop literature about all the things everywhere that can cause cancer. But here's the thing, just the existence of Crohn's inflammation increases your risk of cancer. So avoiding a treatment that could prevent all kinds of other serious medical issues isn't logical.
And few people have major side effects with Humira. Usually just site reactions, a few headaches, etc.
 
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?
 

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