Humira Club Support Group

Crohn's Disease Forum

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Matrix said:
It's my last day before to start the treatment (I'm starting methotrexate tomorrow and humira friday). I'm a little bit anxious, because I had very bad sides effects with Imuran and 6mp a few years ago. But with 3 surgeries in the last 15 years ... I've no other choice to try everything to stop the disease :-S

By the way, the first bill from the drugstore is impressive. 3276$ for the first 4 shots.
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everything is done... methotrexate no side effects for the first week.
Humira : 4 shots done today... so far so good

how long can it takes for any side effects to appear, at the start ?
 
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I just joined the Humira club taking my first four shots this past weekend. I was feeling great by the next day, I was skeptical it was the medicine as opposed to relief from the side effects of 6mp--but my doctor said it really can work quickly. So far so good. They sent me the pens even though I had requested the pre-filled syringe. I have already requested my doctor submit the maintenance prescription for syringes. Hoping I stay feeling good as I taper off the prednisone. Very thankful to this thread for tips on getting started!
 
My next injection is due tomorrow but I am feeling like crap since Friday. Its the first time I feel like this since I started Humira. Bleh bleh bleh. I just hope its a cold or something. cause I don't want to switch to Remicade.
 
Matrix said:
everything is done... methotrexate no side effects for the first week.
Humira : 4 shots done today... so far so good

how long can it takes for any side effects to appear, at the start ?
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I was told by the pharmacist that side effects usually show in the first 24-48 hours. The next possible time slot is about 2 weeks after. If you get through your second set of injections with no issues - things are usually pretty good to go.

Obviously, she was not referring to some of the less common, long term possible side effects.
 
Scifimom said:
My next injection is due tomorrow but I am feeling like crap since Friday. Its the first time I feel like this since I started Humira. Bleh bleh bleh. I just hope its a cold or something. cause I don't want to switch to Remicade.
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My daughter has a cold and it seems to affect her appetite and cause a little mini-flare for a day. Hopefully, that is all you are experiencing. She is only a month in to her Humira, so I was a little worried, too, but I think it's the cold.
 
Joining the club! As soon as I get meds from specialty pharmacy that is. Feel like poo currently. Lots and lots of extra intestinal manifestations. Back pain, hip pain, chest pain all the time. I can only sleep on my back and only on a heating pad. Energy levels In The toilet. Doc thinks the humira will help. Does it kick in fairly quickly? Everything I read says side effects are fairly low- what are y'all's experience in the side effect area? I e read to let the shots come to room temp before injecting and that helps. Any tips are greatly appreciated
 
I have been on Humira since the first of September, 2014, and feel the best I have in many, many, many years. I'm 54, if that tells you anything. My fatigue level has dropped to almost nil, I never feel nauseated like I used to, and my stools look the best they ever have. Humira has been a blessing. Hope it continues to work as well as it has so far.!:D
 
Blue Eyes, I noticed a difference around the 3rd month and while I've had a moment or two where I haven't felt well, I have to say the Humira is working, and working well. I take my pen out of the refrigerator about 30 minutes before I do the injection and haven't found the injections to be painful. They burn sometimes, but I think a yellow jacket sting is 100 times more painful. Before you do the injection, make sure you grab a significant amount of skin on your thigh because that will help minimize any pain. Good luck!
 
Actually, my pharmacy gave me the phone number to the Humira people, and I've already go that set up. Thank you! Still waiting on pharmacy. I'm resorting to calling them daily until they get their stuff figured out. They are gonna get sick of me, lol.
 
Hello everyone! I am new to this support group. I was on Remicade and started developing anti-bodies to it. Was supposed to start Cimzia, but my insurance won't approve it until I try Humira. I had my loading dose last weekend. I used the pens. I bruised very badly and also developed an itchy rash at each injection site. I have discovered that the tips of the pens have latex on them. I am allergic to latex. Has anyone else had this happen? Did you have to go to the syringe version, and did that help? I am awaiting a call back from my Dr. to see what next steps should be. Would appreciate any advice...thanks
 
Hi ttowntiger87,

Welcome to the site! Your meds and outcome are similar to mine. Thanks for the info on the tips….I too started to develop an itchy rash at the injection site after a few injections. I was told by my do that these are typically early signs of rejection, however, not in all cases. In addition, I was advised that the Azathioprine/Imuran helps in combating the antibodies/ the possible rejection.

Did you try taking 10MG of Loratadine and an Acetaminophen prior to the injection, and applying ice to the site post injection? This has helped me - however, I am switching to the syringes.

Again, thanks for the latex info - very helpful!
 
After almost 2 weeks on Humira (and 3 weeks on 10mg Mx) I'm starting to have muscles aches. In the last days, it was in both calf, now it moved to my left arm, close to the shoulder.

I don't know if it's from humira or mx,
is it something I should be worried about ?
 
Matrix,

I applaud you - you're quite a fighter taking on this disease head on. I would give the Humira a chance. It sounds like you're in the inoculation/loading phase (several injections in a short period of time)?

As you may know, muscle cramps are a rare side effect of Humira. I would log the time, location of cramping, injection times, food intake, etc. etc. (lots of detail) and get with your Dr. asap. He/She should do some SOP blood work-up which includes vitamin deficiencies and other key possible factors. If you can't get in with them…get on the phone with your them - have dialogue asap.

Hang in there - better days are coming!
 
Headaches are common in Ibd kids and adults
Any time there is inflammation it can aslo affect the head.
DS gets chronic headaches worse when flaring or allergy season
Allergies start to show up in most around age 4 btw.
 
Yeah, I'm wondering if she's starting a flare. Am kind of hoping the headache is just a Humira thing.

Never thought about allergies but will put it on the radar. Thanks, MLP.
 
Napali Coast said:
Matrix,

I applaud you - you're quite a fighter taking on this disease head on. I would give the Humira a chance. It sounds like you're in the inoculation/loading phase (several injections in a short period of time)?

As you may know, muscle cramps are a rare side effect of Humira. I would log the time, location of cramping, injection times, food intake, etc. etc. (lots of detail) and get with your Dr. asap. He/She should do some SOP blood work-up which includes vitamin deficiencies and other key possible factors. If you can't get in with them…get on the phone with your them - have dialogue asap.

Hang in there - better days are coming!
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Thanks for your answer.
Tomorrow is my second injection day for Humira... (2 injections)

It is not a big pain, but it is annoying and the pain is sporadic, this morning, nothing on my left shoulder but it started a little bit on my right, after a couple of hours, it's fine.
 
Just an update on me: I finally got my Humira from the pharmacy, boy was that an ordeal. I took my loading dose (4 injections) last night. No problems, it did sting at the end of each injection, but not intolerable. No rash, no bruising. For the last 2-3 months I have been dealing with a ridiculous amount of back pain and chest pain, to the point of not being able to sleep on my side at night or it would wake me up- this was in addition to my CD not being under control. Well, I don't know if it is in my head or not but some of the crushing fatigue, aches, and brain fog seems to have lifted a bit today. My general mood is better. My tummy still hurts (CD pain) and i still got awakened by chest pain at 4 am this morning, but I will take what I can get at this point. I choose to see this as an improvement. Heres to hoping it continues to get better.
 
Thatnsounds positive BlueEyes. I have had to miss my injection this week due to an infection and I am suffering badly already. My fatigue is ridiculously bad and a lot of discomfort too. I now know what people having meant when they said they can't wait to take their next injection.
 
Update on my muscles ache, I contacted the nurse, and my GI said that it's very possibly a side effect from the MX, and not from humira. I have to wait for 1 more week to see if it's a temporary effect, if it doesn't get better, they will lower the MX dose.
 
I have been on humira since October 2014. I am currently on 2 injections every 2 weeks. I started with 1 injection every 2 weeks and it was not enough. My bloodwork still not right so awaiting for my consultant to get back to me. She spoke about adding methotrexate and at a push humira 2 injections every 10 days. Is anyone else on 2 injections every 10 days?
 
Me too (I have UC not Crohn's, at least as best as anyone can tell) - one Humira shot every week and 100mg 6MP daily. I'm really tired of feeling this way (tired, run-down, chronic low-grade abdominal discomfort, still no reasonable notice when I have to go poo, even though the Humira & 6MP have stopped the diarrhoea and most of - but not 100% of - the bleeding), and want to have a serious and reasonable discussion with my GI about the realistic possibilities of having the ileostomy/J-pouch, but he refuses. Time for a new GI. He's a terrible communicator, and though I have hitherto trusted his medical expertise in spite of the communication issue, I will not countenance this stubbornness.

The sad thing is that one could reasonably argue that the weekly Humira is technically "working" for me....
 
Well I had my loading dose of 4 shots last Friday. I did 2 in the belly and 2 in the legs and boy did the legs hurt, never again! The ones in the belly hurt too but not nearly as much. Next time I will let them warm up a bit longer and perhaps try icing the area first.

However I do feel a lot better already. The arthritis is almost completely gone and the bowels seem calmer too.
As others have said, there was a lot of gurgling for a few hours after but so far I'm going less often and it looks to have firmed up a little.

I'm still on 25mg of MTX which I don't think was doing anything at all so have asked to stop it but I have to carry on for 4 more weeks to give the Humira a chance to work.
I can't wait to get of the mtx as the side effects were really getting me down. Terrible fatigue, sores in the corners of my mouth despite upping the Folic acid and cramping calves and feet mostly in the middle of the night. I would be able to cope with that if the D was better but it wasn't at all.:thumbdown:

Question for those of you that have used both pens and syringes; was there any difference in the pain?

I chose the Humira pens as I thought that would be easier but I could swap to the pre-filled syringes for my next script if they are less painful.
 
I've been on Humira since June of 2012 -- it's working pretty well although the nurse assured me I'd get used to the pain of the injections and no I find they still hurt. (Maybe I'm a wuss? That's totally possible. :p) I take an injection from a pen every other week -- in fact I just took one twenty minutes ago.)

I'm pretty much side-effect free, except that about 40 minutes after I take it I get like achy and stuffy, dizzy and foggy-headed, as if I had a cold. It lasts roughly six to ten hours... but that's why I take my doses at night. I just sleep through it. My doctor wasn't overly concerned so neither am I. :p
 
:DI've just done my first regular fortnightly shot yesterday and I'm happy to report that letting it warm up a bit more makes a huge difference! Still more painful than the MTX but a lot less than the first 4. I won't be trying my leg anytime soon though.:ytongue:

After the second loading dose of 2 shots the arthritis all but disappeared for 2 days just like the first time, sadly it has so far come back. But right now it's gone and better yet I have virtually no more D! There was a day last week I only went once and it was formed!
So happy to finally have a result and let's hope it continues!

Even when I do still have to go a few times a day the urgency is much less, I don't have to run out of meetings anymore which is great.
The fissure did rear it's painful head again though but I'm hoping it's just because it isn't used to having anything formed and I have been a bit windy which also doesn't help.

I may try questran or psylium to help with that but all in all I'm really happy with the Humira so far, I haven't felt this good in ages.

I was allowed to stop the MTX so I'm hopeful I'll be a little less tired with that gone.
I haven't noticed any side effects from the Humira either, the nurse said I'd still be fatigued due to the Humira but after the first 4 shots I actually felt more alive and less worn out than I have in ages, I've even got inspiration to start cooking again which is very important to me. Let's hope I don't cook so much that I'll be putting on more weight than I need!:D
 
I dont know if yall have heard or not, but they say the humira can stay out of the fridge for 14 days now. I pull mine out at 5am the morning of the shot and take mid day. Still hurts but for not as long.
 
Forgot to mention the (almost) most important thing; I can eat cheese again!
I'm lactose intolerant and it has been getting much worse to the point that I cut out all dairy but I snuck in a few bites of cheese last week and it didn't give me any issues!

Has anyone else noticed they've been able to eat things they were intolerant to before?
 
Yes. My humira nurse give me the news. Although she did suggest that if you do leave it out for a period of time, not to put it back in. I work offshore, "well I did before this last flare that has left me waiting on a surgery date", so she told me to just throw it in my bag and use it within the 14 days.
 
No problem. But I dont think there is anything that will take all the pain away. I have not tried I the belly yet. After feeling like a horse kicked me In the leg, I dont want that in my gut. I have enough pain there as is.
 
I find the belly hurts a LOT less than the thigh, worth a try I'd say. The pain also doesn't last as long as in the leg. The last one of the loading doses I couldn't even finish as it hurt so much.
I do have some lovely flab in the tummy and near the belly button hurts less than anywhere else.
I was scared of injecting anything near my resection scar but it doesn't make any difference, if anything it hurts less there:confused:
 
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.
 
POTTYTIME! said:
I dont know if yall have heard or not, but they say the humira can stay out of the fridge for 14 days now. I pull mine out at 5am the morning of the shot and take mid day. Still hurts but for not as long.
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I did not know this! I am going to be traveling and the traveling kit I've received says it only last for 6 hours. By hanks for the info.
 
peluchde said:
I did not know this! I am going to be traveling and the traveling kit I've received says it only last for 6 hours. By hanks for the info.
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Keep in mind that once it's been out, you need to use it within those 14 days! Otherwise, a recommendation I got for travel was to actually keep it cold by surrounding it with frozen peas, since gel packs/ice packs are usually not allowed. (And make sure to check with all your airlines about traveling with Humira, if you haven't already!)
 
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 large and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
 
Clash said:
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
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I would think so! I get my medication delivered as well, and as long as it's kept on ice it should be fine.
 
I thought so, even the next day, I had left the gel packs in the cooler and they were still extremely chilled. Thanks!
 
Clash said:
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 large and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
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Yeah -- they usually deliver while I'm at work and everything's still cold. Sometimes it's been out there for hours. I'm usually more careful about it in mid-summer (making sure someone's home for the delivery, I mean) but that's in like 90 degree weather. You should be absolutely fine. :)
 
Hi All,

I used to get my Humira delivered to the house but I'd have to be home for the 2 hour window. Now I get a 3 month supply from Caremark delivered to my local CVS. They call me when it's in and keep it in the fridge until I pick it up later that day. It has made receiving Humira a lot less of a worry (and it's cheaper too!).

Good luck,

Alan
 
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
 
Alright, so I started off good with Humira, but after a few months my Crohn's flared up again, and the blood test showed my Humira levels were low, so I was put on one injection a week instead of every other week. It's been three weeks since then, but I haven't gotten any better. How long does it usually take when adjusting the dose to get the medicine working again?
 
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?
 

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