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So, I'll be starting Humira soon

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Crohn's Disease
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Posted 10/31/2012 4:11 PM (GMT 0)
It only took, like, 4 months or whatever, but I finally got the go-ahead for Humira. I suppose that the feet-dragging PCT eventually realised they they weren't saving any money since I was still being given Remicade infusions.

I've just spoken to a woman on the phone. The Humira is being delivered this Friday, although I won't be able to take it straight away. I have to wait for somebody to come to my house and teach me how to inject it.

I'm pretty apprehensive and, if I'm honest, I'm more waiting to see in what way it will try to kill me rather than heal me, based on past experiences with Crohn's meds :-/
Posted 10/31/2012 4:25 PM (GMT 0)
Well, I'm glad you got the NHS to finally move on this! But are you going to be doing both biologics at the same time? Or does NHS get to cancel your remicade?

I do hope that Humira helps you and does not kill you. ;-)
Posted 10/31/2012 4:32 PM (GMT 0)
Oh gosh no - the Remicade has already been cancelled. I think my poor old PCT would have a fit if they had to pay for both! :p

Thank you, kazbern. So do I; so do I.... >_>
Posted 10/31/2012 5:09 PM (GMT 0)
Here's hoping you have success!
Posted 10/31/2012 6:28 PM (GMT 0)
Cheers, Habs :p
Posted 10/31/2012 8:26 PM (GMT 0)
Good luck!!
Posted 10/31/2012 8:28 PM (GMT 0)
Humira has help me immensely,......well before the emergency surgery. It's easy to inject, 10 seconds....

I will be starting again in two weeks to stop the potential spread of my Crohn's to other areas.

I wish you well!!!

Kelly
Posted 10/31/2012 11:44 PM (GMT 0)
Good Luck NCOT! I hope this is the magic you need to help you avoid surgery. I think you'll get used to injections...I know you are probably more worried about side effects and if it will work. I'll be hoping for you. Keep us updated.
Posted 11/1/2012 2:07 AM (GMT 0)
Cheers, folks! :p

Injections should not be a problem at all. I learnt how to inject methotrexate and was okay with that; luckily I'm not squeamish when it comes to needles.
Posted 11/1/2012 3:18 PM (GMT 0)
"I've just spoken to a woman on the phone. The Humira is being delivered this Friday, although I won't be able to take it straight away. I have to wait for somebody to come to my house and teach me how to inject it. "

I got a call like that yesterday also, on this side of the pond what a nightmare. Today they called and the line was so bad i could not understand them and told them to call back. No call back. I called them and they treat you like your a criminal.(the phones here show your phone number in most cases, real systems provide a wealth of information on the callers phone) I have to ask is it worth it? Side effects from the Remicade were rough enough now this. I seriously wonder if any of this is worth it.

I sure hope they treat you better in England. Best of luck with the Humira.
Posted 11/1/2012 3:59 PM (GMT 0)
Humira is part of that second generation biologic, based on human genes instead of mouse genes (like Remicade). I'm on Cimzia, also the second generation, and have had really great results (in fact, I'm used as a success story for the other patients, I was just told). Really approaching remission right now, so I hope the same for you. As my nurse said, biologics are scary, but so long as you keep regularly checking blood, symptoms, etc, stay in touch with your GI, any of the major problems can be caught early, and treatment can be changed. However you feel about the pharmaceutical companies, I still have faith our doctors, for the most part, enjoy healing us.
Posted 11/2/2012 1:46 PM (GMT 0)
Nix that idea, Insurance Co says its not on the approved list, Remicade was however. What is this Cimzia? That may be on the list. Blood tests?, I went probably close to 10 months without one of those. This is interesting.

Better Living Through Chemistry
Posted 11/2/2012 1:52 PM (GMT 0)
Im going in too to start next week. I want to hear about your progress :)
Posted 11/2/2012 1:57 PM (GMT 0)
My Humira arrrived today, folks :p

@Question Everything - That sounds pretty shoddy. I have been lucky so far; the woman on the phone was pleasant, the Humira arrived on the day it was meant to. All I have left is to arrange for somebody to come to the house, which is making me slightly apprehensive because I've no idea when they're going to call about it. At any rate, in your case I would not let dreadful customer service put you off from taking a drug which may potentially get you into remission. Though I do sympathise with how demoralising and infuriating it all is.

@ExJohnson - Cool to hear that you're on the cusp of remission :p And, yes, on the whole most doctors would like to make us better: that is their job, when all said and done. Even better when it is their passion or calling.

Edit: During that typing of that post, I missed not one, but two, new replies... <_<
Posted 11/2/2012 2:00 PM (GMT 0)
@therearemiracles - Good luck :p

@QE - Cimzia's another anti-TNF biologic, in the same mould as Remicade and Humira. It's worth looking into, although normally Humira is tried before Cimzia.
Posted 11/3/2012 2:09 AM (GMT 0)
Been on Humira since December of 2009 and it has been my wonder drug. had a scope and was told intestine looks healthy.
Posted 11/3/2012 11:27 PM (GMT 0)
Make sure you get the Humira assistance program and don't pay the ridiculous price that the drug company charges.  For me, the drug reverses the running to the bathroom and binds me up.  I have to take stool softeners to go.  The medicine also affects my eyes by making them puffy.  It will help with some problems but create some others.
Posted 11/4/2012 5:55 AM (GMT 0)
I like Humira have had good luck with it and it is soo much easier to give yourself a shot than having to sit for hours and hours to get a transfusion ...so far I have read that the majority of people on here with crohns also have some other form of health issues is that just our luck or do they tend to run together like in a lucky us pack yeah
Posted 11/4/2012 5:57 AM (GMT 0)
if you contact the maker of humira they have programs to make the cost way cheaper....just a fyi
Posted 11/4/2012 6:49 AM (GMT 0)
Everyone seems to be different than me, but I took Humira and it didn't even make my Crohns budge. It literally did nothing for me. And the injections were so painful I cried even hours after because it was to bad. Sorry to be such a pessimist.
Posted 11/4/2012 10:13 AM (GMT 0)
Hi NCOT,
Fab that you finally got the go ahead! I was very lucky with my PCT as they managed to get it sorted within 8 days of my remicade infusion failure (but I guess they were terrified of the cost of me going inpatient until it was sorted!) are you getting it via healthcare at home? If so I've so far found then excellent to deal with - never had any issues in the 2 years I've been on Humira!
When I started I was terrified as just a couple of weeks previous had stopped breathing during my remicade infusion but the nurse they sent was great and stayed with me an extra hour until I felt comfortable there was no reaction. The loading dose is hard going but gives you a chance to experiment where doing the pen is best - I ended up only doing one on my stomach and it was too sore for me so did the rest on my thighs - it may hurt but just keep in mind it'll be so much easier when you only have to do one!
The nurse advised I take paracetomol every 4 hours after to try and prevent any side effects - the next day I had a migraine but now I don't really get any after effects apart from slight swelling where I inject.

Within a month of starting I was pretty much in remission which was amazing considering how ill I was when I started, 2 years on things are still calm, not perfect but it got me in a position where I was able to finish my degree and get into work. I really hope this works for you too
Posted 11/6/2012 9:12 PM (GMT 0)
So, Humira: wonder drug for some, useless for others. Guess which group I'll probably fall into...? >.>

A date has been confirmed for my first Humira injection, which is not far away: this Friday.

@lilcrohnieUK - Cheers :p Think the only reason there was such a problem with my PCT was because I don't live in the 'right' county. Never mind the hospital I go to is the closest one to my house (by about half a mile, but still...) and that it clearly has a far better IBD department than the hospital I was at previously (the one a further half mile away). I still got penalised for it and the principle of that annoyed me.

I am indeed with Healthcare at Home, and so far they do seem very good. Competent and organised. Not too worried about the injections, as I injected methotrexate for a while and found that okay. (Didn't much like the drug itself though.)

Anyway, glad Humira has been your wonder drug, more-or-less! :p
Posted 11/7/2012 6:08 PM (GMT 0)
NCOT,
Are you getting pens or needles? I was given the pen kit (Dummy Pen) The Scheduler for Humara called yesterday and tried to arrange everything, but the Cimzia people also called and wanted to set every thing up. The doc hasn't called and no one knows what's going on. Kinda like A greek tragedy :) I have 10 days on Entocort left.

Anyway best of luck to you ,

T
Posted Yesterday 4:50 AM (GMT 0)
The Humira pen is much easier than the syringes, and if you call the Humira line, they will send you a disposal container as well. Before it is full, call them back, and they send you a new one and a postage paid box to mail the full one back. My script costs me $5 a month thanks to their prescription plan.

Oh, one thing you might find helpful.....straight from the fridge Humira burns like hell. Leave it out for about 10 minutes and it will take the edge off, without making it ineffective.

Questioneverything, I too never had any blood work done on Remi or on Humira. Only the Imuran, which was a nightmare for me anyway.
Posted Yesterday 1:39 PM (GMT 0)
Question Everything - I'm using the pens. Took a second dose of 80mg on Sunday. I'm not sure if the reaction is as bad as the first time, but I am feeling under the weather again.

OneEyedChicklet - Cheers for the tip :p The nurse did tell me to take the Humira out of the fridge 10-15 minutes beforehand, so that's what I've been doing.
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