Humira Club Support Group

Crohn's Disease Forum

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I'm not sure... Unfortunately I was always on the once a week dose, but I felt it kick in really fast. Although, I also had a fistula at the time, so it was easy to monitor through that.

Are you on any other maintenance medications, or has combination therapy been considered for you?
 
Well, when I first started Humira, I had been on Prednisone for several months prior... but at this point I'm just taking the Humira. I'm going to see my GI doctor at the end of the month, so if I'm still not doing well, we might end up looking at adding something else. There's also the matter of the strictures I have, which the medication can't do much about. I dunno, I'm just desperate to get some relief. I hate feeling so crappy I can barely function.
 
Hi I'm wondering if anyone has experienced dry skin spots on their skin. I've used Humira for 8 months and have been fine. However just recently my skin feels like sand paper and now its on my face. Feels awful :(
 
I was diagnosed with Crohn's 5 years ago, I have been on prednisone, which made me vomit... I cannot keep anything down and can no longer go back on it....
I am new to the site here... and have all my ducks lined up to get on Humira in the next couple weeks but am on the fence.
I wish I could control it through diet, but I love food way too much, and am stubborn to cut out good foods. I eat pretty healthy, I have no idea what my triggers are, other than beer (which I avoid) and stress (common enemy).. other than that, I eat fruit veggies and meats... minimal grain...
My last flare up in July, I ended up developing an infection (fistula) which is right by my left tailbone and makes it hard to sit... my doc set me up for an MRI which didn't happen until last month, to which I actually got another infection and flare up starting, so thankfully he put me on antibiotics which helped both... I feel like a million bucks again. Humira, my GI said, would help both the infection and my crohns...
I need to go through here and read more posts, get positive vibes about Humira and not worry about the side effects etc...
 
Hi Sea Glass,

Sorry to read about the problems you are having with Crohn's. As you can tell by reading all the postings here, everyone has differing approaches to medication and and diet. I've been on Humira for about 2 years and it has been quite effective at controlling my symptoms. To date I have had no side effects and I don't find the injections to be more than just a nuisance. With regard to diet, like you, I love food (retired chef) but I have had to eliminate fruit and vegetables from my diet because the fiber and vegetable oils do not break down fast enough and end up clogging my intestines. I miss them but not the pain which has been absent since I gave them up. Food for me consists of lots of protein (meat and dairy) and simple carbs. My Gastro thinks the stricturing in the intestine is the cause of the problem (I've already had one resection) but with Humira and my change of diet I could buy some time before I need another surgery. Talk with your doctor about how Crohn's is affecting your body. There is risk with any medication but sometimes it's worth the risk. Good luck!

Regards,

Alan
 
Geriatric Jukebox said:
Fellow Travelers on Humira,

I just returned from a month long trip to Australia. I flew with United Airlines and they would not keep the Humira in their fridge. I used the ice/refrigerator packs in a cooler bag which kept the Humira cool for the 24 hour trip. With my Dr.'s okay I took one dose the day I left (one day early) ...one dose 2 weeks later and one dose the night I got back (one day late). I only had to carry one pencil and it was pretty stress free. The security guards at the airport were great and I had no trouble getting the meds and gel packs through. Enjoy your travels!

Regards,

Alan
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Hi Alan,
Did you check with United about keeping the Humira in the fridge before you left? And did you have a note from your doctor explaining Humira pens for customs etc?

I'll be travelling for around 33 hours later this year and I will need their fridge!
 
Hi Layla,

I checked with United and they do want to take responsibility for medication. The flight attendant said they don't have refrigerators on the plane. She did offer to get ice for me if I needed to add more to my cooler bag. The cold packs I used kept the bag colder for longer than I thought they would so I had no problem with my Humira. I did not know at the time that you could leave it out for 14 days. That will make future travel a lot easier. As for customs...they opened the cooler bag and looked at the pen and the cold packs but did not seem to mind either.I carry it on and keep it out so they can see it easily. I always carry the box the Humira comes in because it has the prescription and Dr. name on it. There is really no reason to carry a note from the Dr. as anyone could write a note. I have a knee replacement and used to carry a card with my information but I always set off the metal detector and they always pat me down. The card made no difference to them. Since they have always been respectful I don't worry about it.

Enjoy your travels,

Alan
 
Thanks Alan.

I'll be travelling for 4 to 6 weeks so I will gave to keep them cold to make them last that long. I've got a Humira travel wallet but that only works for 6 to 8 hours and each leg of my journey will be 11-13 hours so I was hoping to be able to use their fridges. I'll contact the airline after I've booked and see what they say I guess...
 
Hi Layla,

I never heard of a Humira wallet so I can't comment on it's effectiveness but the trip from LA to Sydney took almost 15 hours and I left from NY so all in all the time in the cooler bag was about 25 hours. Once in Australia I was able to refreeze the packs and refrigerate the Humira before traveling to our next stop. My wife reminded me that on a different trip Lufthansa did store the Humira in their fridge so it does pay to check with each airline.

Regards,

Alan
 
When the pharmacy left mine on the shelf & didn't refrigerate I marked an X on the box, then I called the FDA & the drug manufacture & they both told me they weren't sure & possibly would just not be effective, they say to keep it around a certain temp for a reason! I marked an X on the box so they didn't try to give me the same box back, its a lot of $ they're out but not my fault. I always leave it out for 30-45 mins before I inject, so its not so uncomfortably cold. I take Cimzia now & I do the same thing with that injection. I would not leave it out for days like others are commenting, the molecules break down & cause the medicine to get cloudy!
 
Has anyone had any experience with Humira failing? I've been on it since 2012, and it worked well, but I've had worsening symptoms since this past fall and I'm now in a full-on flare. Prednisone seems to be doing little to nothing, which was what happened when my Crohns first turned up and I was hospitalized. It took a biologic to get things under control. I'm not as bad as that time, but I'm pretty miserable. This is the next worst Crohns experience I've had.

I'll call my doctor tomorrow...but I'm wondering about other experiences. Maybe it'll shed some light on what's happening here.
 
My GI doctor told me that a lot of Humira patients will become resistant or immune to the effects of the drug over time, it may simply be a case of that.
Hopefully you can find another drug that works for longer this time! Good luck!
 
I had the impression that that sort of thing happened with biologics in general. I think an uncle of mine was on something else for bad Rheumatoid Arthritis and eventually it stopped working (possibly Remicade). That's what I started with and it wore off too quickly.
I'm in the hospital now, so hopefully this will be sorted out quickly.
 
Humira is starting to fail for me 6 months in. Not sure what my GI plans to do about it. Maybe weekly injections? I may ask if I can try Remicade instead. He also may up my 6MP to combat the antibodies. Fed up to say the least...
 
I've been on Humira about a bit over a month now. I felt fantastic after the loading doses, but started experiencing symptoms again 2 weeks later. My GI upped my dose to weekly about 2 weeks ago, and I'm also on a pred taper right now (25 mg now, down 5 a week), but still having symptoms.

Does anyone know how realistic I should be about this? Am I expecting results too soon? Should I ask about combo therapy? My fear is that Humira won't work and that I'll go to remicade (which I'm scared also wouldn't work!).

Ugh. This sucks.
 
Pottytime: Basically, my symptoms are gurgles, gas (but unable to trust any!), bloating, loose stools (sometimes), D (sometimes), and mouth/throat ulcers. I don't have much pain which is great, but it's hard for me to gauge based on that, because I didn't have much pain upon diagnosis.

I hope it works for us both eventually! But being patient is so hard.
 
My GI pulled me off of the prednisone asap due to MRI showes bone lose in hips associated with long term steroid use. While I was on the pred. Alot of salt or any food that would scratch my mouth, I would get an ulcer. The skin in my mouth was VERY thin. I even had my tongue bleed by brushing it hard one morning. All that is gone now even being just a few days off of the pred. Just passing that by that it might be the pred. Good luck with the humira and the Crohn's.
 
Has anyone had a side effect of numbness in their finger tips and a decreased sense of feeling in their theighs (which is where my son injects his pen) ? Also are the chances of an allergic reaction to Humira higher if their antibodies are high and they have already had an allergic reaction to Remicade?
 
Pholestin:

That is the only place I do my injections is in the legs. I have only done 8 injections total but have not had a decreased feeling in them. No problems with feelings in the fingers either. One time I was having a bad day, flare and stress and my finger tips started looking purple somewhat but went away when the stress went away.
 
Hey everyone, I have been following this thred for a while and want to thank you all for posting and sharing your experiences. You have all really helped me along this journey. It's nice to have people to talk to and relate to that understand what I am going through!
I started humira on the 11th of this month with my loading dose and am due tomorrow for my second dose of two injections. I am also tapering off of pred, am down to 10mg. I actually was really happy after the initial dose and was feeling better but the last few days have been bad. A lot of bloating and pain in my belly with more diarrhea. I'm wondering if I will be a once a weeker as it seemed to work the first week after the loading dose.
Pholestin, I had decreased sensation in my legs for a few days after my loading dose. Especially that next day. It was bizarre. I thought I was going crazy. It wasn't painful but i felt like I had to move my legs or touch them hard to know they were there. It's hard to explain.
Has anyone had horrible bloating or acne after using humira? I broke out like a teenager and the last few days I look about 6 months pregnant again with a lot of intestinal pain (worse than usual). Will these side effect subside? has anyone had any experience with those symptoms? Any advice?
 
Wendsjoy:

I too have the bloating. Also look pregnant, and im a guy. I cant tell you for sure which one is making you bloat but my GI and family doctor both told me it was from the prednisone. I have been pulled off of the pred due to other problems so but still on the humira. Guess I will see if my Buda belly goes down.

As far as the pain and the big D. I still go to the potty at least 4 times a day. More if I eat something I shouldn't. Dont know if that will ever go away for me or not. For the pain: after my last dose Friday, I have gotten somewhat better. The cramps seem to have slowed down. Still have some pain cause my belly always gurgles and moving around but the pain is not as bad as it has been for the past 3 months.

Hope that helps some. Hope the injections start to take affect for ya.
 
So, I've been on Humira for a couple of years now and it's still working fine so far (*knock on wood*) but I've never had to take it while I was sick -- even though I get sick with some regularity. Not Crohn's sick, like, regular illness sick. Right now though, I've got this terrible cold with bronchitis and laryngitis and I'm a mess, and I'm sitting here with my pen ready to inject and it suddenly dawned on me...

...this is probably going to suck, right?

Should I be skipping or postponing this dose? I probably should have asked my doctor about this but I wasn't even thinking about it til the alert on my phone went off to remind me to take it tonight.
 
Which is funny, because I've been told to continue to take the injections when sick! Different strokes for different folks, it seems. :)
 
Hey guys I was diagnosed in February with a mild condition of Crohn's and I started taking Humira the 20th day of this month 4 injections, it wasn't that bad just let the syringe warm for at least 30 minutes. For me it worked immediately, no more pain. It is so good for me I started working out again. I gained since the injections 3 pounds Yayyy!!.
 
I'm going to weekly with my Humira now, back out of the hospital. The hope is to stay with this and keep more options open to me down the line, just in case it stops working at some point. Plus it's easier to get a dosage increase through my insurance rather than a complete medication change with something like this (and it just happened that my Humira prescription was due for renewal anyway).

Meanwhile I have a few more days of Flagyl and a month+ of prednisone taper ahead of me.
 
Hi all

I'm new to the forum and new to humira! Had my loading dose 3 days ago. Already starting to feel small, positive changes :dog::dog:

The only downside is the exhaustion I've felt all weekend. PLEASE tell me this is just because of the large loading dose and that it subsides??!! Could barely get through work today. Feels like I need my b12 shot kinda tired but I only got it a few weeks ago lol

Thanks in advance x
 
Irish:

I cant speak for all, but I am now on my single doses and within 10 min I have to be somewhere I can sleep cause after 10 min. I cant remember anything. I crash. I have tried to stay awake to no avail. I thought I was the only one who had the "tired" problem. Even my GI has never heard of anyone who crashes o humira. I dont keep the tiredness lime you do though. Sorry to hear that
 
My son was really tired after the loading doses but he had also been at a friend's house the night before so not sure which was causing. Since then though he hasn't shown fatigue after his shot so maybe it was the large dose?

Hope the fatigue doesn't stick around.
 
I was hoping the lethargy and tiredness would go away or at least have changed, but I've been on weekly Humira and 100mg daily 6MP for several months now (since Oct./Nov.), and every morning I wake up feeling like my whole body is slowly dying from the inside out. I've already had a very delicate, very volatile emotional/psychological state prior to my diagnosis with UC, and since then, the meds and and general downturn the disease has had on my state of mind has brought me to a non-functional standstill. I've instructed my GI doc to get me the ileostomy as soon as humanly possible, so I'm awaiting my first surgical consult next Wednesday, but I just couldn't continue like this. I'm no good to my wife, I'm good to or for my 11-year old daughter (she lives with my ex-wife, so luckily she hasn't had to see me at my very worst - yet, that is). I'm not 100% sure how much of a role Humira is playing in the "side-effects" department in all of this, but the only place it appears to be helping is keeping me off the toilet slightly more than previously, and bleeding less as well. I need a more drastic change than this. This isn't living.

Hopefully my example is just more severe and that for many of you, Humira will return you to life again. I just can't wait any longer - time for more drastic measures.... :sign0085:
 
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My daughter was wiped after loading doses, but even today, we are 3 months into Humira doses now, she had to have a nap. Some doses are better but the fatigue does show up. Best to plan the shots when you have some down time, I think.
 
I moved mine till night time. Was doing them around noon, but after being knocked out all day, I had to do something. So far so good, is the only good nights sleep I get every 14 days.
 
Personally I've not found that the injections themselves wipe me out, i.e. I don't get specifically more tired on "Humira Day," but that I'm wiped out all the time....
 
I don't get tired taking Humira, but I drink a lot of water before and after my shot which is every two weeks. The first few times I did get sleepy, but I have since learned we are supposed to drink 9 glasses of water when we take Humira. Not sure if just on day of or all days. But I try to drink a lot of water everyday.
 
Of course, now I can't find where I saw it. I will keep looking and post where later. It may have been from my insurance medical papers. Has anyone else read that they recommend drinking 9 glasses of water with Humira?
 
If you do find it, I would be interested. I don't think drinking 9 glasses of water per day could hurt, anyway.
 
I haven't really had any trouble with fatigue on my injection days, but I also drink a lot of water all the time, so if there's something to it, maybe that's why I've been fine.
Although that said, I'm generally tired most of the time, but I think that's more the disease than anything else. Even with the supplements I take, I'm pretty sure I still have some deficiencies that slip by the blood tests.
 
Anyone ever sit down with their Humira and just go, "nope, it's not happening right now" ? That was me last night. Did my shot first thing after waking up this morning. I've been on it over 2 years, and sometimes it's been a little tough, but that was the first time where it just wasn't happening for me.
 
Yes. I too took my shot lastnight. But I did follow through, and I have only been on it a few months. I can imagine how you feel. I do think is starting to work for me, its just not the miracle drug that it has been for others.
 
I get tense before my injection. Probably just the sound of the click the pen makes because it isn't too painful if you let it sit out for 30 minutes or so. But I drink a half glass of wine just to relax a little before and that helps me. I am not condoning drinking as I drink very little, but it works for me.
 
It helped me greatly for more than a year. Not remission, but symptoms manageable that I could even cheat on some food items here and there if I was careful. I can predict, too, if a shot is going to be painful and I'll ice the spot to numb it, but usually it's easier to just deal with a few seconds of ouch than to fuss with the ice pack and such.
I think going to weekly may still prove more convenient than having to switch over to an infusion-based drug (my GI says Entivyo would be my next option), so I'll see how long it works. Keep my options open for longer.

Once this flare is over, I think I may start treating myself to a little something to drink when I'm taking my shot. I sometimes try to give myself little "rewards" for after as it is. A cookie or a brownie or something. It just didn't matter to me last night.
 
My daughter dreads the shot. She is too young to read but she can figure out pretty well by our routines if it is "shot day". We have a rule that we don't worry about it at all until the day - that has helped a bit. I don't want her to go over and over it in her head.

I let her have potato chips on shot day. She usually eats like a horse and then crashes. Chips are a big treat. I save the wine for myself!
 
Pilgrim,
Sorry about your daughter having this disease and needing the shots. I can handle giving it to myself, but giving it to your daughter must be as hard for you as it is for her.
 
Actually, I'm more the wimp than she is. I take her to the clinic and have a nurse do it. Because she's little I like to just sit her on my lap and hug her during the process. They've been pretty accommodating so I don't have to be the one to do the injecting.

In a way I think it's harder for adults. The kids, some of them, they don't remember "normal". Adults have more to compare what they are going through to - I think that must be harder, psychologically.

I admire all of you. It's an awful disease.
 
Pilgrim,
My granddaughter was the same way when she had leukemia at age 2 1/2. She was a trouper and it bothered her mom and me more. She is 5 1/2 now - in remission and doesn't remember much. But she goes to St. Jude in Memphis once a year for check up so she is aware of it. I can't understand how kids so young can get this disease. I thought it was in teenagers most, but then I got it at age 51. How young is your daughter?
 
My daughter is 4 now, she was diagnosed at three. The flare symptoms started just after her 3rd birthday. There aren't a lot of kids in that age group with Crohn's but the GI says he is surprised to see the numbers of young kids growing over the past year or so. I have read that it is thought that young children who get Crohn's have more of a genetic component. We haven't seen it crop up in any of our other family though. She is the 6th of 7 children and all the rest are just fine so far.

Hope it is nice and warm in Illinois for Easter. I grew up not far from Springfield.
 
Never felt great on Humira, but I only had 3 obstructions in the past 4 years while on it compared to the 5 in one year before I started that drug. This past obstruction had the GI do further testing and my whole small intestine is raw, ulcerated, and inflamed. Blood tests showed high levels of Humira, low antibodies, so it was said it's just no longer working for me. On Imuran and Entocort for right now. More tests in 4 weeks. Frustrated, but still hopeful something will stop the pain.
 
I am pretty sure Humira has stopped working and I am flaring. My last crp test was elevated, not sky high elevated but elevated. I have lost a lot of weight since summer (everything started when I broke my leg in August). I have the urge "to go" but I never feel "empty" enough. And lately I have pain that comes and goes. I have an appointment on April 17th scheduled and I will probably end up having a colonoscopy in the next 10-15 days. That is if I don't have an obstruction before and end up at the ER. I was hoping for a few more years on Humira (I am on the drug 4 1/2 years so far). I don't like the Remicade procedure and I don't want to be on the drug. But Cimzia is not available in Greece, LDN is unheard of here and if I mention stem cells transplant my doctor will probably laugh out loud.
Meanwhile I am drinking lots of water and other liquids trying to avoid a partial obstruction, (I am also drinking orange soda and ginger beer as they both help me ease the heartburn after lunch).
I want to make Humira work again or find out I am not flaring after all. I had almost five good years so far is it too much to ask for a few more on the same drug?

On top of that I have to deal with all the unhealthy food of the Greek Easter coming up this weekend. I will probably have to explain to everyone why I cannot eat the stuffed wine leaves, the green salad, and all the other yummies Greeks eat, while I will listen again and again of stories about the second cousins uncle grandmother who had bowel problems and was "cured" by drinking goats milk, or by homeopathy, or by doing the opposite of what their doctor advised and "why don't you try it yourself".
 
Pilgrim,
Weather was wonderful on Easter in Illinois. I hope there is a major breakthrough in treating this disease so your daughter and others get better results. She is far too young to have this.
 
Scifimom, your journey sounds very similar to mine. I'm off Humira for now. Hoping this new cocktail helps. I've heard every "magical" cure by lots of well-meaning people, but people like us just nod and smile. Hope you're not suffering too much today and you didn't get tempted by all that delicious food!
 
woohoooo just found out I am fully covered for Humira!! Another week or less hopefully and I will be getting the loading dose! Thank you Canadian government!
 
Sea Glass said:
woohoooo just found out I am fully covered for Humira!! Another week or less hopefully and I will be getting the loading dose! Thank you Canadian government!
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You must have found Trillium! We don't get full coverage, but the cost is much less than full price for us. Our daughter was denied by our workplace insurance because she was under 13! Very frustrating. But like you, we are grateful for the provincial coverage help. I hope your loading doses go well and you feel superhuman in no time.
 
Elektrikhd said:
Anyone ever sit down with their Humira and just go, "nope, it's not happening right now" ? That was me last night. Did my shot first thing after waking up this morning. I've been on it over 2 years, and sometimes it's been a little tough, but that was the first time where it just wasn't happening for me.
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Elektrkhd...and my fellow understanding folks:
I have read our Crohns forum for years and so appreciate each and everyone's honesty. This disease is hard on our body, and can be hard on our minds and soul at times. This is my first time to actually respond to a post. It was this very post that gave me the push to say something. YES...I am with you here. I have been on Humira for almost 3 years and I at times just didn't feel the shot happening for me!! Totally; however, I have never had enough nerve not to take it. I am so proud of you to take your shot the next morning. Yes Humira helps, but the shots can get and be hard to take...I so understand. Everyone...I am not encouraging anyone not to take their shot!! Please do not mis-understand me. Although, I understand fully what was posted here within. Keep up and keep going. I don't like it either...but I am scared not to take the shot. I can't go through surgery again....just want to everything to help as much as I can to avoid surgery. BUT I DO UNDERSTAND!
 
Hello all.....I'm a 'long time reader...first time poster' After over a year of debating/waiting for funding, I finally did my loading dose of Humira last night. I'm feeling mildly achy and tired today, but nothing serious. Here's hoping this will be a good fit for me!
 
Joining the Humira support group. :ghug:

Started Humira last November. It immediately helped with my abdominal pain...but I still ended up needing surgery for a stricture. Anyway, still plugging away with twice monthly dosing.

Gotta love that liquid fire injection... :ymad:
 
Scifimom - I hear the things pretty often about what things I should be eating or drinking from people. Well meaning, but so frustrating, especially because they're usually dead wrong--telling me about all the raw vegetables I should be eating! Or sometimes they see me eating or drinking something and will make a comment about how it's not helpful. So I really hear you on that, I know how annoying it gets to go through either trying to explain to people or do the "ok, thanks, I'll look into that" or "well, I already tried that."
 
Ugh. I'm getting so frustrated. I've been on Humira for about 2 months now and started a weekly dosage a few weeks ago. Overall, I feel so much better (no nausea, less fatigue), but I have increased diarrhea and cramping (diarrhea every other day or so). How the heck am I supposed to know if Humira is working when I feel better overall but have some increased symptoms? I asked my GI, and she said she thinks it will improve and to give it more time.
 
I have been on Humira for alittle over 2 months also. I also feel better but still pushing people out of the way to get to the bathroom. My GI it telling me basically to deal with it. Hope you can get better answers than I can.
 
I'm still hoping it will gradually improve for the two of us. If we feel better, there must be something good going on...right? Gah. It just sucks because prior to diagnosis I felt terrible, but I hardly had any diarrhea, so I'm just like...what?
 
you are coming off prednisone, your symptoms will get worse will your body adapts. also the diarrhea never goes completely away depending on the type of crohns you have. ive also heard that taking antihistimines while on humira is not a good idea, does your doctor know you take zyrtec?
 
Good point about the prednisone, I never thought of that! My taper is extremely slow, but I suppose it's still an adjustment for my body. I'm hoping that the D subsides on its own as I adjust after the taper is over.

As for the antihistamines, my GI does know. I just researched drug interactions with Humira, and it was not on the list, luckily! :)
 
Hey, what do you think about my situation:

I started humira 2½ months ago.
after 3-4 weeks , I started to feel good, I thought I was in remission.
It lasted 1 month, I met my GI, everything was good.

but in the last 3 weeks, symptoms are back.

Do you think the starting dose has stopped my Crohn's but now the every other week shot is not enough ? I know it can take a few months before to be effective, however if I responded at the start and not now, is it because it's no longer working for me ? Do you think I should go on weekly shot ? Do you think my GI could give me Entocort with Humira ?

I called my GI but I'm still waiting for the call back

thanks
 
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That's pretty much how it's been for me as well, which is why my GI upped my dose to weekly. I felt great after the loading doses, but 2 weeks later I started experiencing some symptoms. I'm still having symptoms now, though, but she said I need to give it more time with the weekly dose. Being patient is so hard!

I would ask your GI about possibly doing a weekly dose. Can't hurt to ask!
 
MirrorBride said:
That's pretty much how it's been for me as well, which is why my GI upped my dose to weekly. I felt great after the loading doses, but 2 weeks later I started experiencing some symptoms. I'm still having symptoms now, though, but she said I need to give it more time with the weekly dose. Being patient is so hard!

I would ask your GI about possibly doing a weekly dose. Can't hurt to ask!
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you are now on weekly dose ?
 
May just be a rare freak thing, but Zyrtec caused my first (undiagnosed) real flare of Crohns. Cramping, bleeding, diarrhea. When I stopped the Zyrtec it went away. (I wish it were that easy now.) Maybe a coincidence, maybe just a rare thing. I've had no trouble with sudafed, allegra, or benedryl however.
 
Matrix said:
I hope you will.
Do you have any side effect with humira?
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Thanks. I'm tired for a day or two after the shot, but that's all I've noticed!

Elektrikhd said:
May just be a rare freak thing, but Zyrtec caused my first (undiagnosed) real flare of Crohns. Cramping, bleeding, diarrhea. When I stopped the Zyrtec it went away. (I wish it were that easy now.) Maybe a coincidence, maybe just a rare thing. I've had no trouble with sudafed, allegra, or benedryl however.
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That's so strange! Maybe it was just a coinscidence, or maybe your body just really didn't like it for some reason. I've been on it for years before I even had Crohn's, so I doubt it's that simple for me. :(
 
Hey, everyone!!

I'm making myself more active on here. I need more communication with people who have IBD.

Anyway, I've been on Humira since August so 6 months roughly. I'm still experiencing symptoms a lot.
 
I'm celebrating three years on humira and imuran. Do I get a cake? That would be nice. Mind you so would a bottle of whiskey ;)
 
Ive been on pred too, its nasty stuff. make sure you take calcium supplements!
from what my GI has said; for Crohn's disease the every-other-week dose is low for most patients.
MirrorBride, that is what happened to me. i would keep complaining to your doctor till s/he upps the dose. There is also a blood test called prometheus that checks the level of active humira and newly formed antibodies that they will probably do first to make sure the humira works at all and you havent developed a total immunity to it.
Good to hear about zyrtec b/c that is also my go-to allergy med. allegra works well too. I am also on mtx and colozal so ill need to ask about those interactions.
 
I'm not 100% sure which 3rd party they went with... If it's not Trillium, there are a few others they would apply for... I didn't ask who I was funded through but because my household income is just me, and not high enough for their bracket, I am very thankful for full coverage.
I'm still waiting on my dang loading dose... insert a really angry face... I was told the nurse would call me within 3-5 days (not business day)... yesterday was day 5, and still nothing, and I have been in touch with Progress who has been in touch with the nurse's coordinator who has been in touch with the nurse.. via email.. and nothing! If nothing by 5 today, I am going to go to emerge and have them teach me there hopefully... this is BS...


Pilgrim said:
You must have found Trillium! We don't get full coverage, but the cost is much less than full price for us. Our daughter was denied by our workplace insurance because she was under 13! Very frustrating. But like you, we are grateful for the provincial coverage help. I hope your loading doses go well and you feel superhuman in no time.
Click to expand...
 
I also have a fistula... it's a pain in the @ss... literally! And I'm waiting to take my loading dose... so annoying.. I just want my pains to go away... no surgery yet.. last resort

POTTYTIME! said:
I guess I will have to put on my big boy pants and give it a shot. "Pun intended"
Being bloated and swelled up I got plenty of padding. IM waiting on CT SCAN results to schedule surgery/surgeries. Waiting to see if I got scar tissue, fistulas, partial blockage, etc. Also have fistula on the bum. So looking like im going to do a 2 for 1 surgery.
Click to expand...
 
Got my CT SCAN Results. My guts are getting better but now they found AVN in my hip bones. Also had a MRI to confirm the AVN. GREAT, now I got something else to deal with. Taking a months worth of antibiotics to try and get rid of this fistula, if it dont work then surgery on my hiney is next. My orthopedic Dr give me 5 to 20 years till a hip replacement, "THANK YOU PREDNISONE"! Kinda hard news to hear when you are 35. Looking like my offshore career is over.
 
Anyone still here? It looks like the last reply was in 2009??

I wanted to ask if anyone in the Humira support group had applied to Abbvie (maker of Humira) for their financial aid. My doctor is recommending them as I get ready to retire, but I want to hear details from somebody who's done it.

Is it one and done, or can I apply every year? It looks dangerous as hell to me to retire and give up group insurance unless I know I have some help for what Medicare Part D won't pick up. Still, I can't work forever.
 
Learning how to get around this place; thanks for your reply, pottytime. My GI says he will fill out forms for me as well. He says he has other retirees on Humira, and that I shouldn't sweat this so much.

I'm just nervous about making such a big leap on such an expensive medicine. Doc says to stick to Humira as long as possible, but for a long time I was thinking of requesting Remicade instead since it would be covered by Medicare (because its infusion in a hospital).
 
The only reason I went on Humira was the convenience of doing it myself. Thr only sides I have had are, puts me to sleep within 10 minutes and a very bad migraine the next day. Speaking of which, im about to do one and go to bed. Well suffer tomorrow alittle. But the doc says it is working. Just slowly. Hope it works for u. The only horror stories I can give u is alittle pain when injecting. Other than that, nothing. Take it out about 4 hours b 4 time.
 
Really? No one told me to take Humira out of the refrigerator early. Injecting it hurts a bit, but I don't notice it making me tired or giving me a headache. It's given me a pesky case of very itchy eczema.
 
My GI said I was the first case he has heard of. I used to take my injections around noon every other Friday. I pushed them back so someone is home. Where I am 10 minutes after the injection is where I will stay for about 8 hours unless someone can move me. With that, it has killed my offshore career.

My next 2 shots was due here today but the got held up in Tennessee. Now they are scrambling to get it to me tomorrow after I told fedex what was in it and how much it was.
 
My training nurse told me to leave it out at least 15 minutes prior to injecting it to help with the sting. I leave it out 30 minutes and it seems to help me. Good luck with getting help with your Humira cost. I too am concerned about that in the future. I have about 8 years before I have to worry. It is a scary thought though since the drug is so expensive!
 
Hopefully one day they will make it affordable. From what I have seen on here the average time people has been on it is around 5 years before it stops working. Hope it works out for all of us.
 
I'm curious if anyone that's been on humira for 3 or more years and imuran fortnightly notices behavioural changes and increased anxiety one or two days out from injection. And 4 hours after injection feels calmer?
 
Aura said:
I'm curious if anyone that's been on humira for 3 or more years and imuran fortnightly notices behavioural changes and increased anxiety one or two days out from injection. And 4 hours after injection feels calmer?
Click to expand...

Can't say I have noticed behavioral changes in my almost 4 years on it. Of course I get hyped up when getting ready to take the shot!
 

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