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02-21-2008, 09:39 PM   #1
My Butt Hurts
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Humira log

Brief history - diagnosed 2002. Only 2 flares since then, but this latest one has been been pretty bad, and lasted about a year. I've lost 44 pounds, and finally had to get to a 96 pound skeleton (5'8" female) before my gastroenterologist would put me on something stronger. I started prednisone 3 weeks ago, and managed to gain 11 pounds so far, and I feel a lot better.

Caution - poop details ahead.

Here are my pre-Humira symptoms.
Mainly just diarrhea. I go 3 times in the morning before I leave for work, then I'm good for most of the day - maybe once at work. After dinner maybe I go 2 or 3 times before bed, and then 2 or 3 times in the middle of the night. This is less than before starting the prednisone. (7 times now, compared to 10 or 12. Goody.) It's a good schedule for working 9 - 4pm, but still not a great life.

I started the Humira on Friday, 2/15.
Watched the how-to online video twice at www.myhumira.com , iced up the first 2 injection sites really well, and had my husband do the pen shots in my upper thighs. They stung a teeny bit, but not too bad. Just like a regular shot at the doctor. The next 2 in the mid thighs stung a lot more. I didn't ice them as well - next time I will.
The good news - no nausea, no headache, no swelling, no itchy red patches - nothing.
So now I wait.
They say it can take from 3 days to 12 weeks to see results.
I swear that I pooped less on day 4. Once or twice in the morning, and once or twice before bed. Last night was bad in the middle of the night though. 12:30, 12:40, and 12:50. Today, day 5, I thought I was about to have a regular normal man pooop! A lot less splashing, and much slower - but still skinny. It's taking longer to poop today.
Tonight, I had a terrible bellyache. nothing like I've had before, so I didn't think it was poop related. I usually don't have cramps or pain in my gut. Turns out it was poop related. I don't think I like this new symptom. I've used the bathroom since then, but I still have a dull pain in the same spot.
That's all I know so far.

My real questions are - what happens long term? Humira hasn't been studied over a year in a person, I believe - so what's next?
Also - with the cancer risk - am I crazy?? I'd rather die of diarrhea than cancer, wouldn't you?? Who needs cancer AND Crohn's?? Jeez......
02-22-2008, 04:02 AM   #2
Sojourn
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I guess we're blazing the trails as far as long term effects go. The cancer risks were considered so small that I didn't give much thought to it. But apparently it's a risk many are willing to take.
02-22-2008, 04:59 AM   #3
saidinstouch
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The cancer risk isn't proven per say in the biologics, there has been a very small portion of people in the trials who develop lymphoma, but whether it was related to the drug or just coincidence isn't really know. It's one of those things that it is quite possible and reasonable, but not really known either.
02-22-2008, 09:11 AM   #4
Kev
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Yeah, a lot of meds MAY increase one's chances of this or that... I'd heard a lot of warnings about Imuran... but the actual no's/percentages were really so low... Even so, those small numbers can eat away at you, tucked in the back of your mind... Only way I was able to put it into perspective was to look at 'other' things that increase your chances of cancer, killer diseases, etc.. Just about anything will do that.. too much sun, too much salt, too much caffiene, too much chocolate (wait, that one changed.. now its' good for you... others are under review too - ah, well). I read that obesity is the leading health threat, then others say a hospital stay is the most likely cause of death, ... They used to say a person had to be at their ideal weight... recently a study advised women to try to be at least 10% + over their ideal weight before entering menopause.. Who is right? Who do you believe? There are some similarities between the drugs commonly prescribed to us and certain cancer patients, but I think both the dosage AND the situation is extremely different. for many with cancer, a drug is typically non optional, and in high dosages, for short durations, in an out and out life/death struggle. Whereas for most of us, the drugs are more akin to say 'insulin'.. (even that doesnt' fit right).. I don't know 'how' many diabetics look at the long term adverse affects insulin use has on their risk factors... See, even that analogy is way off. They have no choice.. not that we have MUCH choice... but it isn't life or death. Guess what I'm trying to say (and poorly) is I'm hoping not to die from diarhea OR cancer... but I know i'm going to die eventually, and if these drugs WILL DRAMATICALY improve the quality of my life then it's worth the additional risk... But I'm a gambler by nature.. (more of a grasshopper than an ant).
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
02-22-2008, 02:16 PM   #5
saidinstouch
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The other thing you have to consider is that prolonged inflammation is also considered to cause cancer and if you can't get the inflammation down from other "safer" treatments, then the other options become a bit more appealing. It's a shitty tradeoff (no pun intended), but as Kev said, I'll take my quality of life now and hope the risks are worth it in the long run. We still know so little about some things, that living in fear can only make us miserable. I'll take my happiness and feeling good and deal with the upshot in the future, though I doubt there will be any.
02-22-2008, 05:20 PM   #6
My Butt Hurts
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Well guys, I guess I didn't look at it that way.
I actually forgot about "why am I taking this cancer causer" for most of the day. Thanks for brightening my outlook - seriously!

Humira update - one week -
I woke up in the middle of the night to pee, and guess what?!??!?
No poop, just a pee!!
That hasn't happened in forEVER!
I still had a dull ache in my lower right belly.
When I woke up in the morning, I didn't have to run to the toilet either, and I only went once - not my usual 3 times in an hour.
My belly ache is gone now.
Also, I haven't messed my pants all week. I usually get a little on my undies on the way to the toilet about once or twice a day. Even with the prednisone. Hmmm...
Could this really be from one week of Humira???

I had a pretty miserable summer, and didn't do a lot of activities with my kids, 3 and 7, for fear of not making it to the potty. We went ice skating yesterday, and I'm going to the zoo tomorrow!! Making up for a lost summer! Yippee!!
(Still bringing a change of jeans just in case. )
02-23-2008, 04:02 AM   #7
saidinstouch
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The Humira can work that fast! Unfortunately it can also sometimes not cover the full two weeks and give you 1-2 days right at the end where you slide a bit. Not trying to scare you, but its the reality of the medication, and the slide is nothing like not being on it. It's the same way with a lot of people on remicade, the only difference is then if you slide early it could be a week before the infusion as compared to maybe a mild day.

I'm glad you are feeling great and I hope it keeps up and gets even better!
02-23-2008, 06:22 PM   #8
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Day 8
It must be real!!
This can't just be a fluke - real results in this short of a time!
I wish I started this months ago.

Same today as yesterday.
No poop in the middle of the night. Once in the morning, once in the afternoon.
And HERE'S some good news - On the 1 1/2 hour trip to the zoo, I thought I had to go 3 times. One was gas, and the other 2 were false alarms, and went away quickly.
THAT never used to happen. If I thought I had to go - I HAD to go.
It's really great being able to fart again!!!!!!! (Without leakage or running to the potty.)
Soon I hope to rip a really loud one - I miss them!! Ahh... the good old days.

I think I'm asking to be punished. For lunch I had a cajun chicken sandwich with spicy mayo, coleslaw, and pasta salad with green and red peppers. Am I crazy??
02-23-2008, 10:18 PM   #9
Sojourn
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Congratulations. I also never thought I would be so happy let out a loud fart. Kind of like music to your ears.
02-26-2008, 10:53 PM   #10
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Yup.
I WAS crazy eating all of that stuff 3 days ago.
Did I fail to mention that they brought us a basket of popcorn before lunch??
So day 7 and 8 were great, but due to my BAD BAD choice of lunch - day 9 and 10 were terrible. 7 or 8 bad poops each day with urgency and one accident. That'll teach me! Note to self - just because my belly feels like steel armour again does not make it so.
The good news is that day 11 is back to feeling good again. only 2 poops, and it's almost bedtime.
I saw my g.i. today, and he is optomistic about the first week and a half on Humira. So am I, so now it's just a wait and see what happens next I guess. I'm actually looking forward to my next injections. Weird.
I'm going to start weaning off prednisone from 35 mg down 5 mg every week. Hope that doesn't change anything. We'll see.
03-04-2008, 09:41 PM   #11
My Butt Hurts
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It's still going very well with Humira!
I did my second dose (two injections) a few days ago, and they were easy!
I iced up really well, 15 - 20 minutes with an ice pack directly on the skin. The pack almost hurts, it's so cold. And as soon as the injection is done, I pressed on it. I just learned at the blood lab that if you press on the the site, it won't bruise as badly. I thought the pressure was just to stop the bleeding, and didn't realize it would help with bruising. Well, I have no bruises at all, and no sore feeling either. Amazing!
As for the effects of the Humira, I feel great, I'm "going" twice or three times a day, my appetite is huge, I can tolerate just about anything I eat - even gassy broccoli (no onions, beans or apple cider EVER again!)
Yippee!!
03-05-2008, 10:08 AM   #12
Kev
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Congrats! Thats' great news. One thing I would advise (bear in mind I haven't been on Humira tho) is that, despite the improvements.. (which could be JUST the result that it's masking symptoms...) give your guts time to heal before throwing just anything at them. Think any treatment will change the way one feels... but is that proof that things are all healed up and better? It's sooo hard to be patient, to be cautious, not to go wild and celebrate the 'glad' tidings. I've always felt that ounce of prevention, etc., is worth... well, you know how that goes. And, if you are still taking pred, then there is a potential two-fold whammy that still could bite you in the proverbial... first, you MIGHT flare at a certain point, despite the Humira, from either the removal of pred, OR from pred withdrawal.. (flare like issues that stem NOT so much from the IBD as from the bodies reaction to the loss of the pred... yeah. it's pretty confusing, but apparently all too real!)

Hey, I don't want to rain on your parade... just a friendly expression from someone who has had to face some major downturns when all seemed to be on the upswing. That's when you face agravated symptoms AND a big disappointment lumped together. I'd like to spare others that experience.

Heres' hoping your upswing stays in the upswing mode from now on, okay?
03-07-2008, 11:46 AM   #13
Pricey
 
Is adalumimab another name for Humira?
03-07-2008, 08:02 PM   #14
My Butt Hurts
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Close, Pricey - it's spelled adalimumab. Yup - that's Humira.
Good stuff so far!
03-08-2008, 08:19 AM   #15
Kev
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anyone seen the ad campaign the Humira folks are running to treat RA with it?

Interesting in their 'advisory' part, they say not to take it/start it if one is ill with a 'bug'/'flu', and the rare cases of serious issues if one were to do that.

I guess they haven't started an ad campaign for treating IBD yet, as they can't come up with a commercial that isn't (you ready for this?) too crappy
03-08-2008, 10:33 AM   #16
Pricey
 
I took a nasty reaction to Humira (I'll say as it's easier to spell and pronounce) on Wednesday, was strange considering I had been using it as treatment fine for a good 6-8 months.
03-08-2008, 05:45 PM   #17
Kev
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Any sign you were experiencing/ill with a non IBD related infection or bug at the time? Fever, unusual or atypical aches, pains, symptoms of any kind?
03-28-2008, 09:12 PM   #18
My Butt Hurts
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Just had my 4th dose of Humira. It's been a really GREAT 6 weeks! I haven't slid at all before the 2 week mark, the drug has lasted the entire 2 weeks each time. I feel fabulous, and have one good poop each morning. I'm good all day, then sometimes one more poop around bedtime. Sometimes only 1 poop each day! Really great compared to the 12 poops per day 3 months ago. No belly pain, eating just about anything, this is the life! I've gained 27 pounds in 8 or 9 weeks (including the prednisone started before the Humira.) I don't want to gain any more though. 1 1/2 weeks left on the prednisone. No reactions yet, no noticed lack of immune system yet. I hope it lasts!!
05-27-2008, 01:33 AM   #19
Crohn's in LA
 
"My Butt Hurts" any updates on your HUMIRA trek?

I just started a few dats ago.
05-27-2008, 09:15 PM   #20
My Butt Hurts
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Update - I've now been on Humira for 14 weeks, and life is 95% great!
I actually took my kids on a walk to a nearby park a few weeks ago. Last summer we only drove to the park, and even then only rarely because I would surely have to "go" when we were there.
No side effects from the Humira so far, no noticed lacking immune system.
I still have some urgency, but I usually am only going poop at home in the morning once or twice and then I'm done for the day.
I had one really bad day recently, but I think it was due to something I ate. I had a lot of Kahluha (rarely drink) with a lot of milk, I also had a lot of salted peanuts, and a lot of scrambled eggs. They make me really gassy. I was going to blame the Kahluha, but then I had some wine 2 nights later and it seemed fine. We went camping and drinking was on the agenda apparently. Anyways, I think I'm blaming the peanuts. The good news is that my upped frequency only lasted for one day, and now I'm back to normal. I think I need to take it easy.

In short - Humira's still working VERY well!
(Also on pentasa 8 pills/day)
05-28-2008, 06:35 PM   #21
JTKrol
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I'm hopefully about to start Humira in a week or two. This post was good to read. Thanks.
05-31-2008, 05:07 PM   #22
Crohn's in LA
 
I have been on HUMIRA for one week. My stomach seems to make more noise with less pain for a day or two. Now my stomach just hurts. I feel as if I have not had some of the immediate results as of others in this forum. I am hoping it will kick in soon becauseI felt better off of it.

It took 2 months to get the HUMIRA.

My second dose of the starter pack will happen on 6/6/08. I hope this works out.

I wonder if I am so severe that it may take more time.
06-03-2008, 12:00 AM   #23
Crohn's in LA
 
Thanks PEN.

I was getting worried.

I dont feel good at all right now. I feel as if I may be completely closed in an area. Vomiting orange juice 12 hours later. huh?
06-04-2008, 10:44 PM   #24
Lori E
 
I'm 16 weeks on Humira now. Physical symptoms went away around week 8 for me (it took me a while on Remicade too) Around week 10 I started seeing the side effects of itching and swelling at the injection site (last 2 days for me and doesn't show up until about 20 hrs post injection). I'm on week 16 and my final symptom of fever is finally at rest!!!

Ice before the injection and correct amount of pressure and no real bruising anymore. So far so good!
06-11-2008, 12:53 PM   #25
Crohn's in LA
 
Thanks for the reply PEN.

Funny....when I felt great for the last few years I couldn't drink orange juice. Now that I have been feeling bad I can tolerate it.

I have been feeling a lot better since my second set of shots of HUMIRA. Tummy hurts less, more noisy though. If I ate (I will) softer foods then I would feel no pain I am sure. I will correct my diet becasue I have been eating as if nothing were wrong. Thanks for all your imput.
07-21-2008, 08:44 PM   #26
My Butt Hurts
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Well, Humira update - not so good.
I had a really fabulous 4 months, and then I started sliding. I started getting a light brown/yellow creamy leakage whenever I sat down on the toilet, if it was to pee or to poop. Also, I would leak just sitting or walking around. Not enjoyable. I've been gassier lately, more urgency, and having some small accidents, and going more frequently. I also 'can't trust a fart' - can't tell if I have to go or if it's just gas. I was really emjoying my ability to fart again. Too bad. It doesn't seem to be changing by the day, it just slipped a little and stayed there. I would say my life is 75% compared to the 95% quality of life I was having a few weeks ago.
Still not terrible - so I don't know what my next step is.
I guess I will ask for a blood test to see where my inflamation level is, and reschedule an endoscopy that I cancelled in June.

In the back of my mind I said to myself, "What if someone left a bunch of Humira unrefridgerated, but just sent it out to customers anyways?" That feels like why I just started slipping all of the sudden.

Rats.
07-21-2008, 09:31 PM   #27
katiesue1506
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Hey MBH... I had the same thing as you with Humira... after about 4 months I started slippin' little by little. Now I'm on LDN... I'm inconclusive as to whether its working, but it shouldn't for 3-4 months.
02-28-2009, 08:21 PM   #28
AmandaC
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I was getting really worried when Humira was having no effects after 5 weeks but thanks to reading all your posts I'm still feeling optimistic that things could still work out. My GI was worried that I hadn't seen any changes after 4 weeks and is now talking about an ilieostomy but I think I need to give the Humira a chance to work, at least 3 months. I just didn't think I could tolerate the symptoms whilst I waited for the drug to kick in. I just spent 4 days in hospital cause the symptoms were so bad. My GI put me back on flagyl for a little while so I could at least function at home but I'm not sure how we are going to tell if Humira is working when I'm on flagyl .... catch 22. I can't seem to survive without the antibiotic.
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