Humira users

this is what It says under my profile signature:

diagnosed with left-sided UC in 1997. (45cm)

8caps Colazal
1 nightly Rowasa enema
Humira (Jan 2013)
tumeric, cholinergic acid, calcium, potassium, magnesium, triple fiber, VSL #3DS, gluten-free diet.


Not sure why it doesn't show up like that on the threads??? Any ideas on how to fix it?

Me too. She sure needs a break from this disease.
I am doing ok. Went 4x today. The first 3 were in the morning. First one was urgent, but the rest were ok. Once after lunch. I didn't take my enema last night and went down to 5 mg today of pred. It is an ok day, but way better than I was. I figure if this is as good as it gets, then I can live with it. the urgency was the worst for me.
I take my 2 shots a week from today. hoping for continued improvement. Still no side effects. Amen for that.

Therearemiracles , at the begining I got a lot of headaches, ringing in my ears, felt like I was always coming down with a sore throat or cold. They miraculously disappeared. Felt tired at times. Like you I was always calling the Humira or the meds nurse from insurance. I decided I was going to give this a shot for 3 months. Very happy I did. Most of every side effect went away. Maybe I just don't notice some if them. You only did the loading dose? How many single does have you had?
I now take it weekly. Feel so much better. Every Thursday I look forward to the injection . Sounds crazy, it makes me feel better. If it wasn't for coming on this forum I probably wouldn't be thinking about my UC as much.
I think you should give it a little more time. My GI said it could take up to 3 months. I know your not crazy about taking a biologic. We all need a little relief from this awful DZ. So that's my take on it.

I'm not tiny. Average I would say. My friend took Humira for psoriasis . The loading dose was different. Only 2 the first day and 2 the next 2 weeks. Each condition was different in the loading dose.
Why did I have to go on weekly doses? There must be a reason. I did have side effects at the begining . I was determined for this to work. Had to think positive.

Teddlove, you must have gotten a rotten nurse. I told one and she said it was fine.

Yeah on to plan...whatever it is. Didn't do the shot. I thought about the days I cried in the morning because I ached so bad and how I couldn't get a good breath, it was hard to breath in. My stools showed no improvement and I'm still have a lot of D.

It's a long story but the nurse at my docs office said...."linda I can talk to you right, you're not going to tell anyone right? and I said yes (the last time I saw her we prayed together at the office on my loading dose, it was so nice) she said if it's that much pain don't do it.....then she said.....doc said you could build up antibodies so maybe take one dose. So contridicting, but she said don't do it, humira nurse said don't and I decided the side effects were so strong for me!

Not only aches and pains but I was crying all the time. I was emotionally unstable on this stuff too.

I'm going for iron infusions soon. Let me start there. Thanks all :) so much

Hope you feel better!!

How are you feeling today therearemiracles? Will you just stop the Humira completely now? I have my fourth dose next week and today i feel like I have been hit by a bus. Energy is 0, I ache all over and I'm just exhausted and run down! On the verge of tears in work... Finish steroids next week too! Can already notice the difference in BMs from being on a low dose. Have bad cramping today too, don't know if its something I ate or not. Have hot water bottle glued to me!

Thanks Lemonhead. Yes I am still on 125mg Imuran a day which I take at night). Also down to 5mg pred which is maybe part of why I'm feeling so run-down. My body seems to crash when I get to this dose of pred! I am always so tired which I am assuming is from the Imuran! I am going to NYC in Feb so I was hoping to be in some sort of remission but if not, I'll either have to go back on pred (for the 10th time) or else ask about those other steroids.. entrecort I think they're called?! I've been trying to eat so well too but its hard to not have a few cheat days!

Hi Minners again, I was suppose to have my shot on Tuesday and I didn't take it . I forgot to mention that above. You what really helped me and I got away from it? Culterelle probiotics. Those are good.

OMG don't feel bad, most people couldn't stand what we go through, it's ok to cry for yourself. I do that then I slap myself and say others have it worse. It's a feel bad, pick- me- up all in about 20 seconds. Sounds bi polar but its not. I have my own boot camp for myself. It's funny.

I had to eat today. I'm losing a lot of weight so I went to mcdonalds this morning and so far nothing has exited the poop shoot :) I quit taking acacia fiber, tart cherry juice, foriva vitamins and zinc yesterday. I'm only going to take my iron and colazal.....(once again) I can tell without orals my colon is on fire and burns with pain. Maybe the other stuff is too hard on my system right now.

Pred never worked for me, I wish it did to some point. It just made me bloat and very miserable.

I think your humira will be fine, I read don't leave out more than 24 hours. I tried imuran and it gave me pancreatitis. That hurt so bad. So if the drugs aren't working for me, I wonder if I have a very bad yeast problem in my colon? I'm tired of trying to figure this stuff out. I need a mental vacation. I bought a bible yesterday from amazon, all I have is the childrens living bible and I can't find that in my move, so I'm going to refocus on positive things and not read the news on my computer at work. Even Facebook is annoying to me. I can't cancel the account my work account is under me and we do advertising there. So I'm tying to lift my mind and maybe my body will follow?
I hope you feel better and better!!

Lemonhead, how are you doing on the Humira???