Humira?

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Ckk4

Joined
May 17, 2014
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Hey I'm new here. I've been diagnosed with Crohn's since 07. I am going through an awful time right now. I've been in and out of the hospital and am currently on prednisone (60mg). I'm waiting on insurance to approve me to be on Humira. Has anyone ever taken this? I hate being on the prednisone! But it does help. My blood pressure is high and I can't sleep! So I'm ready to start tapering off and starting the new meds. Just wonder if there's anyone else who's also on Humira, and how it is going for you.
 
I bet there are a lot of people on Humira here. I am on azathioprine and Humira. It seems to work for me. I did not have much symptoms but colonoscopy revealed things were not right. I was put back on Remicade but that did not suit me so I switched to Humira. Been on it for one month now. Second colonoscopy showed that its improving, either from one shot of Remi or Humira.
 
Hello there! I was highly allergic to Remicade and switched to Humira last November. It's been amazing for me and I'm currently in complete remission, even though I had a very severe case of fistulizing Crohn's. :) I had a colonoscopy in February and my GI said I had healed so well it didn't look like I had IBD at all!
 
Thank you so much for replying! That is great news! I'm so happy for you! I just got the Humira today, and I plan on starting it Monday. I'm really hoping this works as well for me as it did you!
 
My medicine finally arrived on Saturday! I've been waiting over a month for insurance to go through and all that. Now I just need to let my Dr know I have it. When you guys took it, did you have a nurse come to your house and show you how to do it? Just curious about how all tht happens.
 
Nurse trained me at the clinic to give the humira shots to my son.
Good luck with humira.
DS has had a good run with it so far .
 
We went to the hospital outpatient clinic for our loading dosages. My daughter had a severe reaction to Remicade so insurance wanted to make sure she was somewhere they could monitor her in case of a problem. She had absolutely no adverse reaction, just complaint of multiple needles.

I thought Humira was much easier to fit into our schedule of life. Hope it works well for you!
 
They said they would send someone to my house to train me. I am beyond frustrated with this whole process. I've been waiting over a month! The med has been in my fridge since Sat. and still no one has contacted me. I've made several phone calls. I've been on 60mg of prednisone, now I'm starting to wean down. I just can't take the side effects anymore. Ugh!
 
Dont want to give you bad advice here but to be honest there is not much to the injections. Very simple and the injections themselves dont hurt much.

Is there not some instructions on the Humira website?
 
There are instructions, but they act like it's a huge deal, so I just thought it was lol. Hubs and I have talked about going ahead and doing it. I just hope if I did go ahead and do it, that it doesn't mess with my insurance coverage. I sure am getting impatient though.
 
My husband ended up just giving the med last monday. Finally, a nurse called me yesterday and made an apt to come out. I haven't noticed any changes with my stomach yet.
 
I started Humira 2 months ago. Just now beginning to notice changes. Others I've spoken to on the drug notice fairly immediate results.

I have noticed no serious side effects from the drug. I use the syringe. Quick and almost painless (to me anyway).

Good luck if you decide Humira is for you.

Miles






)
 
It took 4 - 6 months for DS .
We almost stopped it but after a dose increase ( he was on kiddie dose -20mg)
It took a few more months and he was good ever since.
Good luck
 
I'm starting on it next week as I reacted badly to Azathioprine and 6-MP.

Was basically given two options: Have surgery now and removed the small infected area, apparently it is only a small part of my bowel and I wouldn't even need a bag. The consultant advised me to go for the surgery.

I really didn't want surgery until I'd tried Humira first though, so will give it a few months if it doesn't help then I guess it's time to go under the knife
 
Just be cautious before ever having surgery. I did have the surgery and my dr says the scar tissue from the surgery I had is inflamed. Looking back I wish I never had to have surgery. I wouldn't have that scar tissue and would be better off!
 
Thanks Ckk4. Seems plenty of people say the same thing, surgery is definitely a last resort for me. I don't want to end up having to have regular snips I'd rather try and control it in one piece first
 
Yes Humira works great at least for me thus far. I started it last October. At first it was a very rough introduction period. I had folliculitis and tiredness, no energy etc. It was very mean to me at first. Not to scare you but everyone reacts differently.

Ifg your having issues with the drug just remember to let your doctor know. It usually takes 12 -16 weeks to properly gauge the effectiveness of the drug. Abbvie has a patient protection plan, this can help with your co pays on Humira. I've heard of people paying $5- with their insurance.

Hope this helps.
 
Everyone is different. It works wonders for a lot of us, not me though. It was keeping my extra-intestinal manifestations (episcleritis, hidradentis, & Psoriasis) under control but did not help my fistulas and actually caused depression slowly over many years. Apparently depression happens to the tiniest percentage of users.

Remicade worked GREAT for me but I built up immunities.

So my advice is to give Humira a chance for a few months. If it doesn't work or causes adverse reactions ask to switch to another biologic. I think there are about 5 available for Crohnnies now.

Good luck.
 
So today was the day of my loading doses.

First two doses at 10am, I had the the nurse in charge of Humira shots. She administered the shots with me standing up, just pressed the pens a few inches either side of my belly button didn't pinch my skin or anything. Barely hurt and I thought phew this is going to be easy....

I go back in the evening and a different nurse has been assigned to do my next two shots. My concerns began instantly as she couldn't even get the lid off the pen and had to ask a colleague. She then pinched the fat on my belly and injected and wasn't steady, it hurt like buggery! so yeh I won't be taking the 'pinch' approach when I do my own. I will be just pressing against the skin as the first nurse did....I also won't be going near that 2nd nurse again
 
Oh dear... I'm sorry you managed to get a bad nurse! :( I use the pinch method too, but I use emla patches (they have lidocaine cream on them) and put them on an hour before my injections. I don't even feel the shots because of it, which is great.
 
Oh wow that's awful! Ya know, it hurts badly every time I get my shots. Theocean, where do you get those? I need to get some!
 
Does icing the area make much difference? I remind myself that 10 seconds of pain is better than 12 hour flare ups of pain!
 
We ice every time but my kid still screams. The numbing cream is better but still hurts. My kid is really hoping to drop Humira. She hates it but knows it is a necessary evil. Too bad it isn't IV. That she can handle easily.
 
Personally, I always thought icing made it hurt more. I think it makes the skin super-sensitive instead of numbing it. The real key is to let the medicine come up to room temp (so let it sit out for 30 minutes before) before. Doesn't make it painless, but it does make it less painful.
 
Well I nearly 3 weeks on since my 4 loading doses, I had another 2 doses on Thursday last week.

So far SO GOOD! I haven't had any inflammation since Thursday's dose. I have been testing it out as well. Eating some foods that normally irritate me have been fine! I'm yet to try any of the really bad stuff yet, like red meats and salad. That can wait a while.

Early days yet, but I am feeling good!
 
I've been on Humira for almost 10 years. Managed to maintain symptom-free remission the whole time, gained weight, 1 normal BM every day. The colonoscopies show virtually no active disease; there's some scar tissue there though. Still battling the Crohn's fatigue a little bit but I'm not sure if I'm just expecting too much. Otherwise feeling awesome.

No side effects noticed except some scalp psoriasis, which may or may not be from the Humira. I don't even feel the injections anymore, and it sure beats taking 10-15 pills a day, and trying to remember them whenever I went anywhere, etc.
 
Are you on any pills along with the Humira? I'm not have as good luck with the Humira as it wished. They have now put me on weekly does.
 
No pills at all. I was on bi-weekly doses and I felt fine, but they weren't seeing what they wanted to see on the blood tests and scopes (and, admittedly, I was probably starting to "slide" a little by the time the next injection came around) so they bumped me up to weekly doses about 6 years ago.
 
That sucks, I know my GI used to always talk about surgery like it was the last resort. But then again, other people get surgery and are able to stay in for remission for decades afterwards with the right drugs. Don't give up! There's usually always another drug to try or treatment out there. Even a treatment like tube feeding (or replacing some of your food with Boost) can calm things down.
 
Thanks! I'm going to take every route possible before doing surgery again. Think I'm just gonna call doc and ask him to get me on the 6mp he was telling me about. I've done all juicing fasts and all vegan diet thereafter and nothing has worked long term for me. I'm still holding out hope though!
 
I start Humira next week and after reading your posts, I feel sooooo much better about it! Frankly, I hope it works because I'm sick and tired of taking 8+ pills a day, and have for many years. An injection every other week will be a blessing. Pentasa and Entocort worked for me for a long time, but I've evidently built up antibodies and they're not working like they once did. I tried 6MP for six weeks and it made me horribly nauseated and I broke out in a rash all over my legs and arms, so I had to stop taking it. Keeping my fingers crossed that Humira works as well for me as it has for all of you.
 
Ckk4 have you tried combo therapies like Humira +Imuran or Humira +Methotrexate? Humira + Mtx didn't help my daughter but Humira & Imuran helped a lot. It wasn't enough for her in the end but it is the last drug available for pediatric CD here in Canada. Try speaking to your doc about combo therapy if its right for you. It has helped for many.

We are now moving onto trial drugs to avoid surgery as long as possible. I so understand not wanting to go that route until you have no choice.
 
6 weeks on and I'm noticing a vast improvement now. I even ate some vegetable soup and red meat this week with no repercussions, usually they would cause inflammation for me. Lovin the Humira right now, I hope it keeps working like this!
 
I might get diarrhea for a day, followed by an overwhelming exhaustion, my joints get achy, my stomach becomes distended, and my stomach is Either having pain, or is completely quiet. Right now I'm eating all organic food, and doing a few other things, so I'm not sure which one is helping! I'll take it though.
 
Sounds a lot like I do when I think I'm flaring. Sometimes I feel like someone is holding a blow torch to the inside of my intestines. I also get really fatigued, run a low fever and only want to lay around.
 
yeh it's burning and cramping sensation around the belly button for me. relieved temporarily by a bowel movement or 5! Usually have to take a Tramadol to calm it down
 

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