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well doc didnt want me to take some pred along with the humira as it might mask what the humira is doing at the mo, getting a bit fed up now of walking about like a 90 year old duck and struggling to get out of a chair now lol, the humira has done great cept for the extra trips to the bog and this joint pains, just hope they aint gonna stop it before i try pred with it as well
 
Hi there Can1991

The humira was a great help to my joint pain as well as any other symptoms, but after 2 great years, I'm having a bit of a flare up. I am from the Minto area (Ripples). Is your Dr in F'ton? I am sorry that my Dr from F'ton is leaving in July. Hope to find a good replacement. Hope to see you around here again!
 
serene said:
Hi there Can1991

The humira was a great help to my joint pain as well as any other symptoms, but after 2 great years, I'm having a bit of a flare up. I am from the Minto area (Ripples). Is your Dr in F'ton? I am sorry that my Dr from F'ton is leaving in July. Hope to find a good replacement. Hope to see you around here again!
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Hi Serene, Yes My Dr is in F`ton also. Dr Fallows. He is awesome. I sure am going to miss him! I just started Humira last week. Seem to be doing great. Nice to know some one on here close by! :)
 
Hey Serene!

I started Humira a little over 3 years ago. I started out on one shot every 2 weeks, and I got really sick and went into the hospital, and went on one shot per week, and now a year after that I'm still having problems!! Crazy. It was awesome when it worked really good.
 
Manzyb said:
Hey Serene!

I started Humira a little over 3 years ago. I started out on one shot every 2 weeks, and I got really sick and went into the hospital, and went on one shot per week, and now a year after that I'm still having problems!! Crazy. It was awesome when it worked really good.
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Thanks for responding! The humira has worked great for me--1 shot a week, for 2 years, but I'm having some problems again. Are you on any other meds for crohns beside the humira? I see my dr this week and I'm wondering what the solution will be.
 
Yes, I am on Pentasa, and now down to only 10 mg of prednisone - 5 starting next week!

I just had a colonoscopy done and I still have ulcers and inflammation in my illeum and still just not having very many good days. My doc is waiting for this new drug to come out called Natalizumab (its an infusion like Remicaid) so it looks like I'm going to switch from the Humira.
 
I have been on Humira for almost a year. I started at every other week, and when that didn't work I went to once a week. It has helped, but I still have issues if I don't eat right. Abdomen pain on occasion, but not very often. I have been able to use the assistance program and for one year I only pay $5.00 a month. Yes just $5.00 a month. My normal copay is $50 and insurance picks up the rest(thank goodness). My GI docs office gave me all the info I needed to call and get set up for the assitance. I set out the injection for 5-10 mins. and give it in the abdomen. No thigh ever again!!! If I can get this heartburn and nausea under control I would be a lot happier.
 
I'm hoping to stay on humira when I see the dr this week. It has worked much more effectively than any other meds I have been on. I'm thinking they may put me on something else along with the humira. And yes, Lucy, I tried the injection once in the upper leg----never again!!! Abdomen all the way!
 
Started Yesterday

46 year old Male.

Had my third resection in February so Doc said it was time to try Humira.

Had 4 injections yesterday afternoon. i think I'm already feeling it but maybe it's just my wishful thinking.

I'll report back soon.
 
Welcome gr123 to the forum! I was on Humira too, the shots were easy and convenient. I am assuming you opted for the pens? I used the syringes. I hope it works well for you.

It would be wonderful if you could put your story on a Your Story thread, that way everyone can welcome you and help you on their same journey. Welcome aboard, hope you join us! :D
 
heya folks just back from the hosp and another humira jab been lucky wih the last 3 as i havent felt a thing just a small sting every time, but the joint pains have gotten worse the last 3 weeks or so and have been put on sulphasalazine, heres hopeing this gets rid of the pains as its getting to the stage i cant be bothered getting out of a chair anymore lol,anyone else tried this stuff?
 
I am on humira and sulpha. I don't have any joint pains.
I would think the humira might help with the joint issues you are having, though. I know others have said it has helped their joint pains.
 
heya belle ty, the humira on its own has really helped the gut and pains but ive been on pred for so long that my joints are having a hard time getting used to not being on it now, well, thats what the doc told me 8 years on high dose, as its all that would work and heving really bad reactions to azathioprine and mercaptopurine, so heres hoping the humira/sulh mix works
 
Last time I was on Humira it really worked well for me combined with 20mg weekly Methotrexate. Now I just started back on Humira (without the MTX) last week so I thought I'd come sign up for the Humira club :D

p.s. I use the Pens to inject but I find the injection really painful both in the leg and in the tummy. It's really OUCHY.
 
heya busytucker, pens here also for a needlephobe i think theyre the best thing since sliced bread, i even put off using it for two years because there was needles involved lol,, and yep the legs sting a bit more than the belly, i just go for the same area each fortnight and hardly feel it, hope you get used to it soon
 
Hi. I'm in the Humira Club. I started it a couple of years ago after a long and difficult battle with my insurance. I was started on the pens. The nurse who taught me how to inject was really surprised that it hurt so bad. Not the needle, which I don't really even feel, but the drug itself. I'm sure you understand.

I'm not convinced that it is helping. When I was diagnosed, the only real symptoms I noticed was severe pain (and it only happened twice). So I haven't had the pain since starting the Humira, but I also stopped eating the foods that give me pain, so that might be more the reason why than the Humira. I still have a lot of watery BMs that seem to be mostly bile.

The one thing Humira did cure for me was my dandruff. I started using Humira when I was 22 I think. I started getting crazy bad dandruff when I was 18, and after starting the Humira it is gone. Has anyone else had this experience? I haven't found any information about dandruff being affected by anti-TNF drugs, or dandruff involving TNF. It's just my theory/experience, but I'm really curious about it.
 
Diesanduhr, I have psoriasis particularly badly on my scalp but humira clears it up completely. Last time I was on Humira I went into complete remission regarding the psoriasis and psoriatic arthritis with dramatic improvement with my Crohn's.

Anyhoo, my point is that although it wasn't dandruff, it certainly was a scalp condition that was totally cleared up by Humira. I'm back on the Humira again now and looking forward to being clear again soon :)
 
For people with painful injections, try injecting higher up on the legs. I noticed they hurt less towards the top and towards the inside. The best way I can describe the area is about 2.5-3 inches below the place where your leg starts and about an inch from the center.
 
That's where I have taken my last couple of injections and for me it hurts way less than in the stomach.

But I don't find any of them to be particularly painful - I guess it's all relative. Have any of you ever had a Heperin shot?!? Now THAT hurts!
 
I've had many heperin shots, never found them to be particularly painful... It hurts way more to inject the Humira into my stomach. That's just me, I guess!
 
OK, so... I continue to have injection site reactions, despite taking Benadryl for 3 days leading up to my shot... I'll be speaking with my doctor to discuss what I should do next, but I wanted to ask if any of you have some advice or have had similar reactions... What did you do?

The reaction starts out as a welt almost immediately after doing the injection, and then gets very red, swollen, itchy and hot, and lasts 3-5 days. Quite large, too; the swelling pretty much covers the front of my thigh. (I usually do injections in my thigh, alternating legs each time). And the itchniess... It's driving me nuts! The only way I can describe it is that it itches on the INSIDE... no amount of rubbing or scratching or ice packs seems to make it go away. And I've got the max amount of Benadryl already in my system.

I'm kind of frustrated (OK, REALLY frustrated), because otherwise I am feeling so much better. But these reactions are presenting a whole new set of problems. Really, though, I would put up with the reactions as they are now, but my concern is that they will keep getting worse and I will have no choice but to discontinue the treatment. My next option is probably going to be Remicade. I don't know how I feel about that. Aaaaargh, help!
 
yep i would try the belly jag too, didnt like the leg ones as they stung like hell somehow, the last 3 ive done ive hardly felt a thing other than the pressure of the pen, also i think that taking the pen out of the fridge for about an hour so the liquid reaches room temp makes a diff to the stinging as well
 
I've been having issues all of a sudden with really bad bruising with my injections. Tuesday, luckily enough, I also had an appointment with my GI and showed him and he said it looked like another "superficial" injection.

I forgot to mention on this thread, but earlier in the month I thought I had a pen misfire and had to call Humira and report the whole thing because I didn't get all of the medicine injected in and it went underneath my skin instead of into my muscle. So, I had a huge "swell" where the medicine sat underneath the skin. Not itchy or anything. The next day it had gone down as my body absorbed the liquid.

After that experience, I had a normal injection the next couple times and then this past Tuesday I had a crazy bruise again. And as I injected the pen it felt kind of like the time I had the misfire and felt a delay in the needle being injected in, followed by pain, and then some bleeding upon removing the needle. And then it swelled up some and bruised. Now it's a big purple bruise. so, maybe all of a sudden, I am not injecting them properly!? The doc said maybe I'm not pinching enough skin. I guess it's possible. I haven't been paying too much attention since I thought I had it down by now. :thumbdown:

Anyone else experience the bruising from not pinching enough skin before injecting? :sign0085:
 
I've actually heard not to pinch your skin. If you pinch, it presses the blood out of the area momentarily but then it rushes back in after the pinch.

here's what I've noticed:

If I don't let the liquid heat to room temp, it hurts
If I don't ice the area enough, it hurts
If I ice the area for too long, a bruise forms because all of the blood has been brought to the surface
If I inject too low on the legs, it hurts and bleeds a lot
If I hit a nerve... it really hurts
If I pinch the skin, it bleeds more because I've already brought blood to the surface by pinching
If I let my leg get uncold before I inject, it hurts


What I try every time is to let the pen sit at least for 15 mins, sometimes I help the process along by using the heat of my hand to heat the pen. Then I let the ice sit on my leg for 2-3 minutes. After that I quickly swab the area with alcohol, fan off the area with my hand to dry it and then I place the pen directly on my leg (higher up) with no pinching and I push the button. I pull it straight out after I either hear the wooshing sound or see the yellow in the window. Sometimes I'll have a little blood, but usually its not anything to worry about.
 
You know, when I called Humira to report the misfire, the nurse actually told me "there is no wooshing sound." Obviously, she doesn't have experience with the injector pens. Nice...haha.

Don't the instructions SAY to pinch the skin? That's interesting about not doing that, but I give my shots in my tummy. I would think it'd be difficult to do it sans pinch in the belly. I also never use ice and always let my pens sit for about an hour. I have no problem with pain or a little bit of blood, but it's the CRAZY bruising that;s been happening lately that make me wonder if I'm suddenly doing something wrong. I'll have to post a picture to show what I mean.

IMG_4772.jpg
 
David in Seattle said:
I wonder if any of you have experienced/heard of a reaction like the one described in this thread on another page http://www.healthcentral.com/ibd/c/91518/21364/humira-reaction After you read the initial post from "Jean" at the top of the page, click "View Comments" at the lower left for more experiences/observations. Apparently pretty rare, but it sounds like something Humira users might want to be aware of.
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Dave - a few years ago now, I developed PPS - I had been on remicade for over a year.....thankfully as of right now the steriod cream I have is holding it at bay.....still trying to get rid of the gutatte P I developed after strep though!
 
So, I had another "abnormal" reaction after my injection today. It was similar to the "misfire" I had about a month ago, except to a lesser extent and I didn't lose any of the liquid this time. I had my husband watch me today because last week I also had a lot of bruising at my injection site. I wanted him to see if I was doing anything different than I have been.

He said everything looked normal, but I knew the second I hit the pen injector button it wasn't right because I didn't feel the needle go in right away (which is probably why some of it seemed to pool just below my skin), and the yellow indicator window was going SOOO slowly and that's when I felt the needle also going in slowly. When I removed the pen my skin was raised slightly where the liquid was underneath the skin and there was some slight bleeding, but not unusual like last time. No itching or pain either.

So, WHAT am I doing wrong? I know KatieSue mentioned not pinching the skin, but I've always pinched my skin and haven't had these strange reactions until lately. Is it possible I'm squeezing TOO MUCH skin? My husband said I'm pinching about an inch of skin. Should I only be doing it minimally?

I am waiting for a call back from my GI nurse to hear what she has to say about it. :sign0085:
 
It sounds like a mechanical problem with the pen, like it is hanging up on something. Is there anyway you could be squeezing the pen too hard? I doubt it's anything you are doing, just thinking out loud. You should probably call Humira it could be a bad batch of pens.
 
Yeah, it doesn't feel like I'm doing anything wrong. But the two separate times I had injection problems that I felt the needle didn't go in properly were from 2 separate batches of pens. So, unless it was a coincidence that I got 2 faulty pens in 2 separate batches (which I guess could be possible).

The nurse finally called me back and I asked if it could be that I'm pinching too much skin and she said she didn't think so. She suggested, as well as my husband, that maybe I'm pulling back a little and not realizing it (maybe I am since I've had a couple strange injections, so subconsciously I could be doing it in anticipation of something happening). So, who knows!

She said that the office has nurses that would be more than happy to watch me inject the pen to see if I'm doing anything different. So, I think that's what I'm going to do next week. With my luck, I won't have any problems next week, haha!

When I called Humira the first time about the weird injection, she made it sound like it was something I had done wrong and no possibility of the pen being faulty, which was kind of annoying. I suppose I should call again, but not really in the mood to be blamed again! ;)
 
Well maybe go watch some old Star Trek episodes, Bones aka Dr. McCoy had that shot pen down pretty good, made a cool noise also. Good luck and I really don't think it's you, it's got to be the needle hanging up in the pen somehow.

I'm probably starting Humira in a month or so.
 
I was doing my shot last night and wondered if you are not pinching enough and too tightly. I probably grab a couple of inches of skin enough to make it bunch up but no more than that. Then inject.

Anyway, good luck next week.
 
Definitely not a problem with pinching enough or too lightly. I grab about an inch or more of skin and hold on pretty tight. The nurse that originally came to watch me told me actually I didn't need to pinch so hard. So, who knows. Guess I'll find out next Tuesday if the nurse at my GI's office thinks I'm doing anything funny.
 
Have only had a similar problem once. Ended up getting really sore in the abdomen and a really nasty bruise for about a week. Been using the regular syringe humira for about three months now with no problem, just burns a lot going in.
 
Curious as to how long Humira took to "kick in" for all of you.

I've been on it for 2 1/2 months and feel like I just turned a corner about 5 days ago. That doesn't seem like much, but when you feel like shit most of the time, 5 good days in a row seems like a miracle....
 
Hey Amy,

Yeah, I feel like it took about 3 months for me to start feeling noticeably better. I still have bad days but not as many as before. I definitely have more energy.

Bummer is... I'm still having crazy injection site reactions. The shot I did in my stomach yesterday is even a bit worse than the ones I get in my legs. Doc says I should be taking a dose of pred on injection days to see if that helps. :S :S :S Arrrrrrrrgh. :grumpy:

With reading about other people's experiences, I worry about how long the benefits of Humira are going to last... For now, though, I guess it's worth putting up with these annoying reactions...
 
i noticed it working after one month as i was on 8 x 5 mg a day just to keep food dow when starting humira i was tapering off at 5 mg a week and it carried on working all the way to zero, but after two plus month off pred im losing the use of my left arm and can hardly walk due to pain, also affecting my hands and fingers, so the 20th is the day i ask the hosp to put me back on pred at a low dose or ill do it myself, but the humira certainly sorted out the guts for me, on my 5th single dose tuesday coming
 
It started working 4 days after the initial 4 loading doses; I realised I managed to do something and afterwards didn't feel totally exhausted. But fortnightly injections weren't enough and the last couple of months of being on weekly the rise back to remission has been slow, but steady.

These things seem to effect everyone differently. So just keep them fingers crossed you continue to improve.
 
Hi all. I found that the H started working pretty fast, but slowly building up to really working.

It cleared up my psoriasis in a few days and started the fistula healing in 2 weeks.

I am at my 12th week and can see now how the effects of the H have built up over time.

I have no reactions to the H. I do have fatigue the day or two after the injection. Heck the injections do not hurt too much, a sting and a little discomfort that goes away rather quickly.

I (thankfully), have not felt this well in years.

I will need a little surgery on the fistula tract as there seems to be a little pocket of infection that causes the fistula to open once a week to ten days. The doc wants to clean it out and remove the fibrous tissue to allow the H to heal the fistula tract.

Good Luck to all.
 
Had 2 shots (loading dose) about 2 months ago, but had to stop due to testing positive for TB.

On the TB meds, but recently had 2 flare ups so they put me back on Humira today.
2 pen shots. I in each thigh. It hurts just to touch my stomach at the moment, so no way was I gonna try sticking them there. In the legs stings, but it's bearable.
Don't think I'll ever do stomach unless I have to for some reason.
I hate needle and injections, but these really aren't that bad apart from the stinging.

Only thing I'm worried about is still being on these TB meds. Last blood test I had last week showed TB was still present.

I was admitted to hospital with 225 inflammatory markers. Released on 67.
Stomach is big, load, sore and noisy :(
 
The Humira doesn't seem to be helping my Psoriasis as well as it did the first time I was on it. I'm still hoping for a total remission like last time. It has helped my Psoriatic Arthritis very much and the Crohn's seems to have settled quickly too.

However, now there's a problem.

Biologics nurse told me to stop Humira after the last 2 shots showed an allergic reaction at the injection site. On the first day when I injected, the site swelled up and looked like a large flat strawberry but much less red, then on the second day the itching began! The itching lasted about 5 days each time. Also I've noticed that I'm getting small red blood blisters on the inside of my cheeks; the blisters dissipate after a few hours and so far today I haven't had a new one appear. The nurse told me he didn't think that the blisters are to do with the Humira so I'm kinda left scratching my head over that one.

Of course I was very disappointed to be told to stop so the nurse suggested that I try one more time, only this time I should take a Piriton tablet an hour before my shot (I currently use Citerizine instead of Piriton). So, fingers crossed that sorts it out.

Has anyone else had anything like blood blisters inside their mouth?
 
No, no blood blisters... but injection site reactions are fairly common, I've always had them, and they are a lot better with an allergy pill or prednisone.

Speaking of Humira... I don't think I've ever had an injection hurt as bad as the one I just did. WOWZA... I injected the inside of my leg though... shoulda known better.
 
katiesue1506 said:
No, no blood blisters... but injection site reactions are fairly common, I've always had them, and they are a lot better with an allergy pill or prednisone.

Speaking of Humira... I don't think I've ever had an injection hurt as bad as the one I just did. WOWZA... I injected the inside of my leg though... shoulda known better.
Click to expand...

You find your leg hurts more? I've been reluctant to try my belly, because I figured it would probably hurt more there, haha.
 
Strange how we differ on preferred injections sites. I've only done tummy stabs and since they really are no bother I've never tried leg... I think I'm too scared to just in case they really hurt for me!
 
I did it in both places when I had my first loading doses and thought for sure I'd be injecting into my legs. I thought like you Procyon, that the belly just seemed worse. Surprise surprise, I was wrong.

Though I'm not entirely surprised once I think about it. I can see my veins a lot more clearly in my legs, so that's probably why. Got a little more pudge to work with in the belly region :)
 
Me and Humira

Hiya all, here's to my first post!

I've had Crohn's now for um, how long? About 14 or 15 years and have been on just about everything. I'm now on Humira and it seems to be working very well. I'm not seeing any side effects and I can eat fairly well. I have a bit of a stricture just before my ilieostomy so I have to be careful I don't swallow any large chunks of food that won't digest before it gets there, or I'm in the hospital for about a day on pain meds and gravol while it clears.

I'm using the needles for the Humira and I've found that if you inject it slowly it won't sting - if you squeeze it fairly quick, it stings. And there's nothing wrong with going slow. I alternate sides on my abdomen for my injections and I've never done it in my thigh, as needles there can be a tad sensitive ;). As for problems with the auto-injector, I know they say pinch the skin, but perhaps try not pinching -- hold it right tight against your skin and hit the button, like an epi-pen. It's possible that when you inject it in a pinched piece of skin that the needle is going in "sideways" (as opposed to straight in) so that you're injecting closer to the surface of the skin. If that's the case you'll probably notice some swelling and maybe some redness a little ways off from the actual puncture site. (If you want a bit more of an explanation I can help out.)

Anyway, other than that - I'm a Software Engineer, Aerospace Technologist and volunteer Medical First Responder (in Canada, EMT in some states). I'm living happily symptom free for about three and a half years (stricture aside) with my wife and 18 month daughter. (Oh btw, please don't accept anything I post as "professional medical advice", I am not a doctor - always consult your family or GI doc if you're not sure about something or if you want to change your treatment plan. There, /disclaimer off. :) )
 
Hi all, I just discovered this forum and have been reading up on this thread tonight, as I just started my Humira Pen treatment today (4 doses = 160mg).

Ouch.

I have a slim/muscular build with very little fat on my body, which could have contributed to the pain. I tried various spots in my abs, small love handle area, and thighs. They all hurt, even though I let the shots warm up for about a half hour. Icing didn't make much of a difference.

Anyway, hopefully they'll work for me.

Since being diagnosed (post colonoscopy) with Crohn's in June after brutal cramps, frequent and strained bowel movements, and a loss of almost 10% of my body weight, I've been on Prednisone, first at 30mg/day and now down to 10mg/day. I'll taper down to 5mg next week and then go off it the week after. Within 2 days of starting on prednisone, I felt not just normal, but like a million dollars. (Steroid high, I guess.) Per my doctor's predictions, I started eating 5000+ calories a day, and (also per her predictions, based on my body type), unfortunately not gaining an ounce until I tapered down to about 15mg/day. My eating habits are back to normal now with the same diet I'd had before I got sick. I've gained back about half the weight.

Humira was a bitch to get approved for. I'm in the independent market for insurance, because I'm self employed. I'm very much not indigent, but my insurance prescription benefits cap out at a few thousand dollars a year (the individual market plans virtually all do this), so Humira was going to come out of my pocket (to the tune of $2-3k a month, even after their assistance card). I called the Abbott Foundation, and although I was told I was "beyond their normal threshold" over the phone, I was nonetheless approved within several days of applying, and at no cost to me at all. I feel like I got lucky, and for my unexpected success I'm grateful. Maybe my quick mention of large student loan debt impacted the decision?

While I was waiting a month to get the Humira issue worked out, first fruitlessly with my insurance, then with the Foundation, my GI doctor told me to stay on the Prednisone, but didn't give me a lot of updated advice re: tapering. I self decided to bring myself down to 10mg/day (at 5mg taper a week), and she was shocked I was feeling fine and encouraged me to go back up to 20-25 mg/day until the Humira worked out. I declined, as I hate drugs, and I've been feeling mostly fine, with the exception of one loose-ish (but painless) stool once every ten days or so.

I'm hoping I stay healthy (and feeling as good as I have for the past two months) as I switch out of the Prednisone and into Humira. I'm also hoping that after a year of this, my GI doctor will let me switch off of Humira and into a less intense (read: injection-free) treatment.

In any case, I'm just introducing myself here, and I figure I'll be lurking over the next few months as my treatment progresses.

Have a great night.
 
Hi Joey and Jarod and :welcome:

I'm glad you both found us here. If you don't mind I will ask Ding to move these to the Your Story otherwise they will get lost in this thread and the other members won't have the opportunity to welcome you.

I hope you both stick around and I look forward to getting to know you better!

Take care,
Dusty
 
Hello All,
I posted this question in a seperate thread a few weeks ago but did not get much of a response.

Basically, what would you do if you were me? Quick story:

I recently had a Proctocolectomy, and now have an ostomy. At this point, 4 months later, I don't have any (noticeable) Crohn's symptoms. Before my last operation, I had been on Humira twice before (interrupted by an mysterious small bowel emergency operation), to no great effect.

In the past, I've had signs of Crohns in my stomach and duodenum.

My GI now wants me to go on Humira again as a preventive measure against Crohns flaring in the future.

So, would you start it again, if you felt fine now, better than you've felt in years, now that the deseased colon is gone?

I have a 6 pen starter pack in the fridge, and I just couldn't bring myself to start.
 
hey joe - I would get a second opinion before starting the TNF again. it is very potent and after what you have been through, why not to get a second opinion. especially that in the past it did not have great effect on you.
 
That is a tough one. I was told by my doc that I would be on Humira for the rest of my life, unless a better medication came along or a cure was found! So...based on that I'd probably continue to take it.

But, your circumstances are different than mine, so I would agree with Dan and get a 2nd opinion! :)
 
I decided to listen to my doc and restart the Humira. I did the 4 shot loading dose about an hour ago. I have always done the shots in my tummy, but since I was doing 4 shots and working around my ostomy bag, I did 2 in my thigh.

First shot was in the thigh, and it hurt like heck (I would say maybe an 8 on the ol pain scale.) I was not looking forward to the other thigh, and that one hurt even worse. At least the pain is gone right after the shot.

Gee, only 2 more left. At least they were going in the tummy, where I had done so many before. One on each side and they hurt "normally" like I remembered. For me, not as bad as the thigh. I have more fat on the tuimmy than thigh, so maybe that is why.

I left the pens out for about 20min, but did not apply ice - maybe that would have helped.
 
@ Joe - Good luck my friend with your decision to use the Humira. What was the tipping point that convinced you to listen to the Dr?
I have lots of experience in self injecting to both in the abdoman and in the thighs as I used to self inject every two weeks. if you pinch the skin in the thigh, and do it as high as possible/reasonable, it should be not as painfull.
good luck
 
I actually have a piggy back question to Joe's. My husband who was in the hospital for 3 weeks with severe UC and arthritis pain is home now tapering off his Pred and is doing great. He still have some back pain but isn't using the walker and is getting stronger everyday. His UC symptoms are all gone and he is having normal bowel movements. He has been on a low residue diet and will continue until he tapers completely off the pred in about 7 weeks.

He just got approved for the Humira but hasn't gotten it yet. We've been talking and it seems counter intuitive to start medicine (especially like this) when he is doing so great. The rheumotologist told us that this would be the only thing that will stop the back pain and help with the UC. And the GI doctor told us that he will most likely flare again when he tapers all the way off the Pred.

But, everyday he is getting better and better and not in anyway worse. He's tapered twice already on the Pred. So, wouldn't it make sense not to start the drug and see how his body handles everything once he is mostly drug free (still on Pentasa). Granted he may have some back pain everyday but what if it's manageable through chiropractic care, physical therapy, exercise, etc. The only negative that I can see by not doing the Humira is that it is a long term drug and if he does flare again at any point it would take awhile for the drug to kick in. But, he'll never know what his body can do if he is forever on the drug. What a circle, huh?

Has anyone gone through something similar?
 
Kari - that sounds very similar to my situation. And to answer Dan, I decided to listen to my doc, because 1) I have a history of sticking my head in the sand and not addressing my Crohn's issue. And 2) I have read enough stories recently of people having Crohns attacks even after a radical operation like Protocolectomy. I'm feeling great now and want to keep it that way.

Your husband's lack of UC symptoms might be due to the pred. It makes you feel healed and gives a feeling of general well being. I was thinking the same thing about not knowing if I need it or not. But, I don't want to make the wrong choice and have another operation.
 
I was finally approved for Humira today. It feels like I have been waiting for years but in reality only a few weeks. Nevertheless, I managed to lose another 4 kg in those few weeks and am feeling pretty shitty right now. I'm having my first dose next Tuesday and can't wait even though I am feelng nervous, excited and apprehensive of the results. I am sick and tired of this nasty disease. I am expecting a miracle. Damn it, I deserve a miracle! We all do!!!!
 
If you read through previous posts in the thread you may get an idea of what to expect :)

Some people like injecting in the leg, some people like the stomach. Some people use ice, some people don't. Some people pinch the skin (they instruct you to do this) some people find it's better to not. It's a lot of trial and error. My suggestion would be to try in both legs and stomach the first day and use ice and don't use ice, so you know which way you like best. Good luck!
 
I do too. My GI seems very excited to get me started on it. Just hope I don't have C. Diff. again so I can start on it. As of right now, I don't think I have it.
 
i start Humira this week! honestly when my doctor told me i was gonna be doing it myself, i almost shit my pants. remicade failed me after a few months in remission. i went home to my apt. and played with the fake injector pen thing. i'm trying to get comfy with the loud click sound which is really gonna frighten me when i feel the pain along with it.

i've read through all these pages. i am seeing that legs hurt and stomachs hurt and then other people say the opposite. im not sure where to inject mine when the time comes. i have like, NO fat on me. so pretty much anywhere is gonna suck.

anyone got any advice?
 
The injector device really is easy, and although can be anything from a wee scratch to a wasp sting, when/if it kicks in it will seem a small price to pay.
Folk usually find somewhere or a technique that mitigates it. Just listen to your nurse, learn, and relax. Job done :)
 
Justin - I am thin and thought I wouldn't have enough fat on my body for it to not really really hurt, but I'm doing just fine. The stomach works for me because I have more fat there than my legs, which are also more veiny. I did 2 in each leg and 2 in the stomach my first time so I would know which I liked better. I would suggest doing the same. You may be surprised. I thought for sure I would inject into my leg and it actually hurts way less in my tummy. So, don't worry too much about it. I was super anxious and scared and it wasn't nearly as bad as I had imagined it being. Like Beth said, it's a minimal amount of pain that is a small price to pay for feeling better! Getting over the mental fear is the hardest part about the whole thing really. You'll do great!
 
dreamintwilight said:
Justin - I am thin and thought I wouldn't have enough fat on my body for it to not really really hurt, but I'm doing just fine. The stomach works for me because I have more fat there than my legs, which are also more veiny. I did 2 in each leg and 2 in the stomach my first time so I would know which I liked better. I would suggest doing the same. You may be surprised. I thought for sure I would inject into my leg and it actually hurts way less in my tummy. So, don't worry too much about it. I was super anxious and scared and it wasn't nearly as bad as I had imagined it being. Like Beth said, it's a minimal amount of pain that is a small price to pay for feeling better! Getting over the mental fear is the hardest part about the whole thing really. You'll do great!
Click to expand...

thanks so much! i will try to 2 in leg and 2 in stomach thing.
 
I was just as scared in the beginning. All the warnings. It's been 4 months now and I feel great, hell I even have normal bowel movements!! Now it's routine. I like the leg better.

Relax.
 
I thought that I might add my thoughts and experience with Humira because before I went on it I came here and read everyone's posts and kinda got freaked out. The concensus was that the injections were really painfull and I was really scared by that. I've been doing the injections now for 6 weeks and don't find them bad at all. I don't ice or anything, I just take it outta the fridge and warm it up in my hands. So for someone new I just thought that I would put in my two cents.
 
Up the dosage?

I'm currently on Humira but seems its not working. Of course I'm only 40mg every other week with shot in the leg. Can they up the dose of my Humira? I really need remission. Been miserable for about 3 months now. Uggg.
 
How did you feel after the loading doses?... They made a big difference to me but after a couple of months it wore off and I was slipping out of remission. You certainly can up the dose, because that's exactly what my consultant did when I went back to him. I'm now on 40mg a week and still improving every week.

Contact your GI and see if you can get approval for weekly doses.
 
I agree...my shots were working fabulously for the first month and then I started flaring and ended up in the hospital w/ a partial blockage. I got changed to weekly shots and 75 mg on top of that. The weekly shots really helped me out while it took a while for the Imuran to fully kick in. And now I've been feeling great for 4 months now with no flare symptoms!
 
I'm with northerngurl - I don't find the injections to be painful at all. Leg or stomach - they are both the same for me, I just alternate back and forth.

Tjohnson - I have been on Humira 3 months and it doesn't seem to be doing jackshit for me either. My doc and I have discussed increasing my dose to 1x week, which I understand to be the maximum dose.

Good luck - hope start to feel better soon! -Amy
 
I still seem to be getting the swelling/itching reaction at the injection site :( This week was worse than ever but I haven't reported it because I'm worried they'll tell me to stop. The Humira doesn't seem to be helping my psoriasis as much as it did last time I was on it but back then I was combining it with 20mg weekly of Methotrexate. However it does seem to be helping the Crohn's. Any day now I start injecting 10mg Methotrexate so I'm keeping my fingers crossed that that does the trick. Not sure I'm going to be okay with the syringe method though... a little scary but I guess I'll get the hang of it.

Do you guys think that the swelling/itching thing with the Humira shot is ok? I've been taking citirizine tabs and recently tried piriton but still getting a reaction.

I find leg and tummy to be equally painful recently.

Tracy x
 
Hey Busy; I've been having pretty bad injection site reactions with Humira. I thought I was going to have to stop taking it as well. Keep an eye on it and make sure it doesn't keep getting worse. Do you notice any other symptoms of an allergic reaction, or is it just local swelling and itching?

My doc suggested trying a single 30mg dose of pred the morning of the day I take my injection, it seems to reduce the swelling and itching. Good luck with the metho injections!
 
Claire617 said:
Anyway haven't had an injection since September but from time to time I get really bad pains in my legs and joints up to the knee so much I can't move them and regular pain killers aren't any use. Just wondering if anyone else has suffered from this side affect and if there's anything around that might ease the pain??
Click to expand...

I get really bad pains in my legs too, along with erythema induratum. Apparently the pain is arthritis - is that what you mean? My GP put me on Naproxen (silly man - not supposed to take it with Crohn's because it causes more irritation), but after a trip to A & E not being able to walk and having swollen elephant legs, my consultant took me off that and put me on prednisolone. Arthritis is gone, erythema is reduced, but as soon as i start reducing the dose it comes back again. Hence I'm starting Humira on Thursday :) Let's hope i can wean myself off the pred! I really want to get rid of the moon face!
 
Hi Alice and :welcome:

I'm glad you found your way here. Do you think you would like to post in Your Story so you can be welcomed to the forum. This is a safe and friendly place for info, support and laugh and to ask questions if need be. I hope you stick around so we can get to know you better.

Welcome aboard!

Take care, :)
Dusty
 
MsSickandTired said:
Hey Busy; I've been having pretty bad injection site reactions with Humira. I thought I was going to have to stop taking it as well. Keep an eye on it and make sure it doesn't keep getting worse. Do you notice any other symptoms of an allergic reaction, or is it just local swelling and itching?

My doc suggested trying a single 30mg dose of pred the morning of the day I take my injection, it seems to reduce the swelling and itching. Good luck with the metho injections!
Click to expand...

Hi Sharon,

I did also get small blisters full of blood inside my cheeks. They bled away and returned in different parts every day for about 3 days but the biologics nurse said he hadn't heard of that kind of reaction before and guessed it was coincidental. Do you have any other reactions other than the local swelling and itching?
- Tracy x
 
Yipes! I thought I heard/read somewhere that blood blisters were associated with an allergic reaction to drugs. Though maybe I'm not remembering correctly. Hopefully someone else can be more helpful, but I tend to think maybe you're having more of a severe reaction!

Hope you get things figured out soon! What about visiting another doctor about the blood blisters?

Check here for what the Mayo Clinic says about possible side effects from the medication. The bottom paragraph mentions sores or ulcers of the mouth
http://www.mayoclinic.com/health/drug-information/DR601467/DSECTION=precautions-
 
I'll be starting on Humira on Friday after building up antibodies to Remicade :)[ it was like a miracle drug). I'm hoping the Humira will be another miracle drug for me and I really hope it starts working before school starts (Sept. 7th). I've read through all of the posts so I somewhat know what to expect. Anyways I guess I'll soon be part of the Humira Club too.
 
Thanks everyone. :]
So my mom just got back from the pharmacy about an hour ago to pick up the Humira, and they made a mistake, they ordered the syringes instead of the pen... So, looks like my two shots will have to be with the syringe tomorrow, now I'm a little more nervous. But at least I'll be able to have the pen next time. Now before you get confused as to why I'm only getting two shots for my first loading dose is because I'm only 13 (I'm guessing pretty much no one knew that xP) and they had to adjust it to my weight.
Hope the Humira is working good for you all. :ghug:
 
5 days in and to be honest I don't feel any better. In fact, since the loading dose I have developed a razor blade swallowing sore throat and I still have pain in the area of the Ilieum. I have lost more weight also. I mentioned this to my GI who told me I need to wait a while to feel the full effects. He also told me to stop eating solid food and stick to tea and soups. I know its different for everyone but what is the usual time before Humira starts working?
 
For me I felt the effects after about a week or so. Some people it takes them several weeks. I agree, give it some time. It doesn't work right away for a lot of us unfortunately. Hang in there! Remember if it's been several weeks and you still don't feel improvement there is the option to take the shots every week. Once I started feeling better with my Humira it only lasted for about a month and then I started going downhill again. My doc put me on weekly doses and a small amount of Imuran and I've been doing great since April! So, don't give up yet. It just takes a little tweaking to figure out the right combo sometimes. :) But if you're symptoms get worse definitely let your doc know!
 
Hey Crohn'sGuy, I'd have to say it was a good 3-4 months before I thought the Humira might be doing something. I've been on it for a little over 6 months now, and I'm feeling pretty good. Still not 100% sure though, I usually flare every 6 months so over the next few months I guess I'll see if anything happens. But, like you, I was frustrated that it wasn't a night-and-day improvement. Are you still tapering your steroids? Just hang on a bit longer, I hope it does something for you soon.
 
Busy said:
Hi Sharon,

I did also get small blisters full of blood inside my cheeks. They bled away and returned in different parts every day for about 3 days but the biologics nurse said he hadn't heard of that kind of reaction before and guessed it was coincidental. Do you have any other reactions other than the local swelling and itching?
- Tracy x
Click to expand...

Hey Tracy, I totally missed your reply earlier. The only reaction I seem to get from the Humira is the local itching and swelling. The blisters in your mouth could be related to an allergic reaction... I've never had that.
 
one of the fiirst things the doc asks me at the hosp is, any mouth ulcers? i would certainly ask about that on your next visit, the humira has done its job for me seeing as i couldnt get by day to day without being on 8 x 5 mg pred a day , one only one again per day after being off them for months to see if it kickstarts the natural dose my body should be making again, but,,,,,, im going to try questran as food seems to be shooting through me and they think its a bile thing after me getting the gallbladder taken out years ago, so fingers crossed for questran lol
 
hi guys,
whelp, yesterday was a shot day, and after joining here and reading through everyone's posts I took the plunge (haha) and decided to try my thigh location, instead of my belly.

SO SOOO sooooo much better than the belly.

ok, so it did take me awhile. I was nervous about a new location, nervous my thigh would hurt more. Nervous that it would hurt at all, period. After the ice/alcohol prep I even chickened out and had to put the dose back in the fridge for a few hours.

Glad my husband encouraged me to try again in the evening. He even steadied my hand (so i wouldn't impulsively jerk it out) and counted slowly to 10 for me.

I'm now on the 'thigh-location' team for good. I don't think I'll go back to the belly shots.
:)
 
Hello everyone, will be having Humira in a few months time once the funding is approved. Unfortunately around my place this can take up to one full year but I will wait since it comes free and I want to give it a try. Reading through the posts in this thread I notice everyone is complaining about serious pain in the legs, I'm quite skinny and worried these will affect me even worse. Any encouragement ? :(
 
Glad to hear you found a place that works for you, Savvy! :)

Fribourg - Try not to worry too much about which will hurt worse. The pain in either area is very minimal, especially in comparison to what we build it up to be like in our minds! You will find a spot that works best for you and that you are comfortable. Just keep an open mind and try in different spots. I even found different spots in my stomach region that don't hurt at all compared to other places.

I'm thin too and I was terrified before I started my shots. It wasn't even close to being as bad as I had anticipated it being. It may take some trial and error, but don't get too stressed out about it. In the grand scheme of Crohn's it's probably the least pain you'll have to endure with only minimal annoyance. ;)
 
Thank you Marisa for the encouraging words. I guess its all about the pain we crohns sufferers mostly care about, we always tend to fear any extra pain. My daily (regular) pains are far worse than a sting, you are right! Thank you again
 

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