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Humira and the progress???

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Crohn's Disease
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Posted 6/7/2018 6:33 AM (GMT 0)
Hi I've posted a couple of times before and appreciate all the responses I receive. Well my history diagnosed w UC age 17 now 42.. age 40 was told UC is now crohns. Had been on sulfasalazine for a long time til it stopped working then went to imuran but after 4 months and no improvement (been in a flare for about 18 months now- went through pregnancy which made things worse) i also had to receive a blood transfusion 2 weeks due to all the bleeding. I just started Humira 2 weeks ago along w 150mg of imuran .. and right away I felt amazing!! Went from 12/14 trips to the bathroom all liquid to 3 trips soft stool. I finally got relief!!! Well I just took my 2nd dose today but a couple of days before along w today I went from soft stool back to semi liquid stools and more trips to the bathroom along w the bleeding which had just started seeing no blood. Is this normal? Is it because the first dose was wearing off?? I was so scared maybe Humira wasn't going to work for me but seeing results the first week was a Godsend-- but now I feel I'm going backwards. I hope taking the 2nd treatment will put me back to where I was and only get better from there. Is this a normal reaction for most???

Thank you all for responses I appreciate them all'
Posted 6/7/2018 10:47 AM (GMT 0)
Have a diagnosis changed from Colitis to Crohn's happens quite regularly. You've done amazingly well considering the wrong diagnosis, and a medication that's pretty much useless. I think you've certainly made the right decision progressing to Humira. Remicade would be the first choice, but Humira has proven to a very effective therapy for most.

It's hard to say why you've done so well after you're first dose of Humira, then are now experiencing syptoms again. You might just need more time for the drug to reach a strong therapeautic level. You'll likely need to stay the course and wait it out for awhile longer. If things don't improve over the coming weeks, you'll need to see your GI and likely have some updated bloodwork and diagnostics done.

In the meantime, try switching to a low residue diet. It will give things a chance to calm down. If things get really bad your GI might suggest a short course of Prednisone just to patch you over until a better assessment of the Humra can be takne.

Hope you're feeling better soon.
Posted 6/7/2018 12:21 PM (GMT 0)
I agree with 73, you need to give it some time. It's a good sign that you had an immediate response to it. I would not kick it to the curb just yet.

Hope you feel better soon.
Posted 6/7/2018 3:04 PM (GMT 0)
Don't worry, be patient, and give it more time. The good news is you felt a response, so you're likely within the 65% of people who do respond to Humira. I'd expect more of a sustained response in the coming weeks. Lets look at why you experienced what you did.

The goal, when 1st starting a biologic, like humira, is to get your concentration of that medicine up to an ideal therapeutic (healing) level. Your first shot of humira is a burst of the medication that is quickly used up, so it's not really a surprise that you felt better. As you get additional shots, the concentration of humira builds and you can sustain a response.

Once in maintenance dosing (after loading doses). Everyone gets the same initial humira dose. Patient response determines whether you need Humira more frequently or not.
Posted 6/7/2018 4:45 PM (GMT 0)
Thank you all... yes I agree w 73 I need to watch my diet. I went from feeling horrible these last 18 months and barely eating much to feeling amazing. I got excited to finally be able to eat. Maybe I tested the waters to soon with the food. I still watch certain food items but went from eating 1 small meal to normal 3x a day w snacks in between.I have a follow up appt w my GI after 1 month of being on Humira to see where I'm at. I hope this dosage will get me back and with watching my diet more I'll get those great results back. We'll see what today brings after the dose last night. And I'll have to remember to just be patient!!! Thanks again.

Post Edited (Summer4) : 6/7/2018 10:51:30 AM (GMT-6)

Posted 6/7/2018 5:55 PM (GMT 0)
Keep in mind since you were doing so bad the past 18 months, even when things settle down you just can't jump right to normal eating habits. Try eating several smaller meals instead of 3 normal size. When possible, I split a meal. I will eat half, then eat the other half later. Be sure to get good protein when eating. Carbs tank me, so I really watch them.
Posted 6/8/2018 1:00 AM (GMT 0)
Diet is certainly in important issue when trying to control symptoms. Don't forget to stay away from the typical Crohn's avoidance foods. No nuts, seeds, corn, popcorn, and also just hard to digest foods in general. Some only avoid these when flaring, but it's a safe practice to just avoid them altogether.
Posted 6/8/2018 2:00 AM (GMT 0)
Thanks -- I agree and I know better but when you literally don't eat for 18 months to avoid all the bathroom trips and have to care for 2 little ones i got excited when I felt amazing. BUT I do know better. Since taking the 2 nd dose of Humira yesterday today was better less bathroom trips but still semi liquid stools. I do always stay away from crohns avoidance food. Crabs are my weakness unfortunately. I've tried but I seem to always go back to it. But having those 2 weeks of feeling amazing and being able to go out w the kids and not worry I need to try harder.
Posted 6/11/2018 6:11 AM (GMT 0)
Hey, Summer4, this isn't really an answer to your question, but I just wanted to say I feel for you with being sick with two little ones; I have two little girls ages 2 and a half and 9 months old, and was in a horrible flare during my pregnancy also. I was hospitalized and had to get 4 units of blood and countless iron infusions due to the amount of blood loss (hemoglobin was 4.3). I just want to let you know that you are a great mom to your kiddos and you are fighting for them, too. Great job and you can do this; I'm cheering for you!
Posted 6/11/2018 7:26 AM (GMT 0)
U.c.me, thank you so much for that! I have a 5 yr and 8 month old and some times it's so hard because they don't understand when I have to say no to beach trips or the zoo things like that. You stated you "were" in a bad flare... I hope you have found remission and get to enjoy the littlest ones a bit more! Thanks again! So far w the 2nd dose of Humira I'm feeling better not quite where I was after the 1st dose but no where near where I was before Humira so I'll take it for now and hope I get to remission! Good feeling knowing we're not alone.smile
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