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So looks like I'm going to try Humira

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Crohn's Disease
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Posted 5/21/2013 3:37 AM (GMT 0)
What a difference a good doctor makes! Really like my new GI doc. He sat with me for an hour going over everything that I've been through and what he wants to do to get me in to remission. Like I figured I'm basically steroid dependent, and he thinks I've probably never really been in remission.

I go in Tuesday for my colonoscopy, and he's ordering up a bunch of testing to get me ready to try Humira. He does not really think my risks are increased for Lymphoma very much, and feels I really need to do something now to get this under control. I agree.

Would love to hear anything I can about those who are on it or have tried it. Typical side effects? Hard to give yourself that shot? I'm nervous, but hopeful now. Thanks!
Posted 5/21/2013 4:04 AM (GMT 0)
I can't help you in giving advice and such but I'm in a similar boat as far as getting ready to start it... I hope it works wonderfully for you and also hope you post the results you see from trying it...


Good luck and I hope you are feeling great right now (and forever after ; )
Posted 5/21/2013 5:31 AM (GMT 0)
Hi Jen, Good luck with the Humira. When I was on Humira they had
a nurse come to my home to teach me how to give myself the injections. Also remember to take the Humira out of the fridge 1/2
hour before injection.
Posted 5/21/2013 7:32 AM (GMT 0)
Thanks! I really hope it works. Kind of discouraged after doing some reading online about others experiences with it. Seems like it didn't work for a lot of people. Trying to stay positive though!
Posted 5/21/2013 10:58 AM (GMT 0)
Hi there! I've been on Humira for 6 years with no major side effects. I use the pen once per week. I take in the morning since fatigue will hit me about 12 hrs later. I just go to bed early that night and wake up fine the next day. Good luck!
Posted 5/21/2013 12:05 PM (GMT 0)
Humira didn't work for me, but then nor did Remicade, which I tried first. Not responding to Remicade is unusual, according to my GI: he said he only knew three other people that it didn't work for besides me and that its success rate was 80-85%. So I dunno, bit of a disjunct between that and the internet, if you ask me. But my GI wouldn't lie.

At any rate, Humira is more likely to work for you than not work. The tip about taking the pens out of the fridge at least half an hour beforehand is a sound one: it'll reduce the pain of the shots. Personally I never found the shots that bad: there's a few seconds of intense stinging but it very quickly fades.

Good luck!
Posted 5/21/2013 12:12 PM (GMT 0)
I started Humira (1 pen every other week) in January and I've never felt better.  I too was VERY nervous about the side effects, but I'm getting blood work done on my off weeks.  So far, so good.

The shot hurts, but only for about a minute.  Like others are saying...make sure to take it out of the fridge 30 min. before you take the shot.  I'm deathly afraid of needles, but I'm handling this fine.

Also, I too had a nurse come out to show me how to do the shots.

The only complaint I have is that I seem to be more tired now.  I used to go to bed at 12am-1am.  Now, I'm going to bed at 9pm-10pm and I'm still tired when I wake up.

Good luck!!

Posted 5/21/2013 2:14 PM (GMT 0)
I have been on Humira for some time and continue to take it even after my ileostomy. I do as the others say and take it out of the fridge about 30 mins prior to the injection. I do mine in the legs as I have a tremendously low pain tolerance in my stomach (and a bunch of scars from surgery!)

I too either feel tired or suffer from insomnia the day after my injection. I have tried doing it in the morning, afternoon, evening and right before I go to bed. I haven't found a time that works best for me as yet. Prior to my emergency surgery, the Humira was really working for me and I was feeling great. It had nothing to do with my surgery. My surgery was due to a perforation during a colonoscopy for a stricture dilation.

I do hope it works well for you! Once you get past the initial dosage, which is quite high, it's not so bad. I just set a bi-weekly reminder in my calendar and off I go.

Good luck to you!

k
Posted 5/21/2013 3:45 PM (GMT 0)
I just joined this forum and found it by googling muscle pain and Remicade. I feel like I have been working out for days non-stop and every muscle and joint hurts. I will be getting another infustion of Remicade on the 11th and my GI says it is not the Remicade causing the muscle/joint pain but it is the inflamation that is part of the Crohn's and once they get that under control it should be better. I have been getting the Remicade infusions since Nov '12.
My GI also said if this next does of Remicade does not resolve the issue they are looking at Sulphasalazine or 6MP addition to Remicade. Is there anyone out there that still gets Remicade along with one of these and has it helped?
____________________________________-
Diagnosed Nov 2008 as UC taking Asacol, Aprisa, Lialda etc with no luck. After a huge flare in Nov which hospitalized me, I was rediagnosed with Crohn's. Have only been doing Remicade infustions- now every 8 weeks, Calcium, Iron Supplments.
Posted 5/21/2013 11:55 PM (GMT 0)
HI, JUST GOT THE WORD THAT I WILL BE STARTING HUMIRA ALSO. LETS THINK POSITIVE! SUE
Posted 5/22/2013 1:02 AM (GMT 0)

Sounds so much more positive Jen,

Good luck with Humira. Hopefully it will be the best treatment option. Glad to hear you're with a better Dr.

Tom.

Posted 5/22/2013 8:37 AM (GMT 0)
Thanks for all the tips and advice. I'm actually excited to get all of this going. You know you've been sick too long when you're excited to stick yourself! haha
Posted 5/22/2013 9:00 PM (GMT 0)
Jen, I am just about to do my shot! It's not that bad really. Here's hoping it works wonders for you!

.......and it's done.

It's really that easy. 10 secs.

:o)
Posted 5/22/2013 10:55 PM (GMT 0)
That's great Larasmom, doesn't sound too bad. I'm not too squeamish with needles, I'm sure after a few times I'll be a pro. :) I sure hope it does help. Now it's just waiting to get it going. I know they need to do all the tests and go through all the insurance okaying everything. But I'm just suffering. Eating hurts, passing pure watery diarrhea. So tired and weak. Steroids don't even seem to be doing the trick these days. Well I won't say that, I'm sure I'd be hospitalized if I wasn't on the steroids. You just get tired of feeling so crappy!
Posted 5/23/2013 12:32 AM (GMT 0)
I know what you mean. As scared as I was to start taking it, I was never so happy to hear it was working.

Be kind and gentle to yourself. Healing takes time and it will take some time before you start to feel better. Don't over do it. The best advice my GI gave me was "Learn to say no." And I have! I only do what I can and make sure to get enough rest, even if it means we leave functions early or I excuse myself and go to bed if we are at home. Those who know my history aren't offended at all.....those who do get offended, aren't people I want in my life anyhow.

Sending you happy, healing thoughts.

Kelly
Posted 5/24/2013 6:12 AM (GMT 0)
Hi there, by no means do i want to scare anyone, but I took Humira for just about 1 year and it worked great - but out of nowhere the whole right side of my body went numb... i went to ER and i saw the neuro on call...they did a CT and MRI thinking it could be MS brought on my immunosupps (Humira)... it was not...what i got from Humira was something called PML - progressive multifocal leukoencephalopathy... (google it)... luckly bc it was caught so early - i will live. this is not a joke and i am not here to scare anyone... it worked for me but the risks it does have are high... bc your immune system is suppressed it can create new problems your body may have been suseptable to previous and now cannnot fight. PML is a virus which most people have that lives in your brain. when you have no immune system your body activates this virus which will attack your brain and spinal cord and can kill you within 6 months. please beware and do your research. also listen to your body. if i would have trusted my family dr. i would have just left my symptoms and kept waiting and it would have been too late. please do your research...please!
Posted 5/24/2013 10:09 AM (GMT 0)
How scary Carrie, I'm glad you're going to be okay. The risks really scare me (hearing things like this). But I'm really not sure what else I can do. Seems like any of the medications that suppress our immune system open us up to some of these risks. Seems like we can't win.
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