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Feeling GREAT on Humira after an allergic reaction to Remicade.

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Ulcerative Colitis
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Posted 7/30/2010 5:28 PM (GMT 0)
I'm just writing about how awesome I feel now that I am on Humira. I tried everything since I was diagnosed, and nothing ever worked very long.

What I tried:
6MP
Prednisone
Lialda
Asacol
Colazol (still on it now)
Remicade

After being in the hospital a bunch for UC flares and being on 60 mg of prednisone for almost 5 months (causing me to gain about 60 lbs in 3 months, as well as other horrid side effects, but that is a story for another time), my doctor upped my 6MP (I had been on a lower dose since I was diagnosed) which in a month landed me back in the hospital due to a terrifying case of neutropenia. Needless to say, I stopped that.

Then, I started Remicade and felt okay for about a month but then started getting a rash on my face and after maybe the 4th infusion the rash was horrid and itchy, and I also became EXTREMELY lethargic, as well as anemic and I had really bad vitamin B12 and D (I think) deficiencies. I was on all kinds of medications for the side effects, and the Remicade wasn't working very well to stop my UC symptoms anyway. After a few months of being absolutely miserable, I talked with my doctor, and (faced with the only realistic options of either going on Humira or having surgery) I opted to go on Humira.

I had no idea that it was going to do such a good job! I feel 97% like a normal human being now! Sure, I have to avoid certain foods or I get some GI upset, but I have my energy and old life back! Sometimes I even forget I have UC. I am so happy my life is no longer under the control of a disease, and I am not scared to go out, wondering if I will get hit with a wave of cramping or diarrhea .

I guess my point is: don't give up! Out of so many options, one may work! And it very well may be the last option you have! smilewinkgrin

-Kelly
Posted 7/30/2010 6:00 PM (GMT 0)
Isn't Humira great?? I too had a horrible reacton to Remicade, felt like I was having and asthma attack on top of severe back ache, rash at injection site, immediate need to run to the bathroom and pass blood. I tried the 3rd infusion twice and both times 5 minutes in I had a horrible reaction. I was put on Humira 2 weeks after having my reaction to the Remicade. I've been on humira for almost 3 1/2 years. It's my life saver! Glad to hear that there's someone else with a very similar situation as to me. :)
Posted 7/30/2010 6:53 PM (GMT 0)
It's really great to hear success stories like this! I've only had 2 infusions of Remicade so far and I haven't had an adverse reaction but it has done nothing so far for my UC. I know that there's a good possibility that I'll end up needing surgery. I'm just hoping it doesn't have to be right now. So it gives me hope that if Remicade isn't the answer that maybe Humira will help me. Congrats on your remission!! :o)
Posted 7/30/2010 7:34 PM (GMT 0)
kcolwell24,

How quickly did Humira start working for you?

I was diagnosed w/ moderate to severe UC pancolitis in January and Lialda put me right into a quick remission. But all of July I have been in a horrible flare.

After a flexible sigmiodoscope today, the doctor wants me on Humira.

So currently I'm on Lialda and just started Prednisone.

The problem is that I'm uninsured so I'm trying to get assistance from Humira before I have to spend $4000 for the starter pack and then $1000 per injection.

I'm hoping the Prednisone will hold me over until the Humira assistance program hopefully accepts me.

But how long after starting Humira did you notice results?

Thanks
Posted 7/31/2010 12:55 AM (GMT 0)
UCbrian,

I definitely noticed results after my first month on it. Probably sooner, but I am not sure. I am only on my 10th week now, so (at least for me) it does its job very quickly!

I'm also surprised that your doctor wants you to go on Humira so quickly. For me it was the last option before surgery.

If I remember correctly, the price for one pen was $500 without insurance, which is bad, but is not NEARLY as bad as Remicade, which is in the thousands per infusion.

Good luck with getting financial assistance and let us know if it all works out for you!

-Kelly
Posted 7/31/2010 2:51 AM (GMT 0)
UCbrian:

Results vary between each person though. I saw results real fast myself when I started Humira. I still had minor trips to the bathroom at random times but I quickly got over that by the 3rd month on it.
Posted 7/31/2010 4:11 AM (GMT 0)
kcolwell24, is there a reason why Humira was your last option before surgery (does it have the worst possible side effects of all the options)?  It seems that if Humira is so much less expensive than Remicade more people would try it first...

Sweetie...welcome to AZ!

Posted 7/31/2010 10:38 PM (GMT 0)
Thanks AFO! Well, for your question about Humira being the last option I too have that same issue. It's my last option before surgery. I'm allergic to 5-ASA drugs or so it seems. I can't take Remicade due to being allergic to that also. I'm also allergic to 2 other medications. Due to that fact, Humira is my last option. Also, Remicade from what I've experienced has been the first option before Humira and if you don't or stop responding to Remicade, humira is the next step. I believe if you talk to your GI he/she may tell you that also. From what I know and have read on the Humira website it may also give the same answer, plus I think humira is still not FDA approved. But I'm falling behind on the status of that though.
Posted 7/31/2010 11:52 PM (GMT 0)
I have been on Humira for 8 months and I have seen much improvement.  I still have minor flares such as leakage, stinky gas, and mucous. I'd say I was about 85% in remission.  My doctor didn't even try me on Remicade or drugs like 6mp. Predisone didn't work and he won't prescribe larger than 40 mg.  We weighed all the options and chose Humira.  Humira is more convenient to give since I teach school.  It is hard for me to take off.  I hope I continue to show more improvement:)
Posted 8/1/2010 3:11 PM (GMT 0)
afo:

From what I understand, and from what my doctor told me, they try Remicade first because it has been out on the market longer and therefore has had more time for any negative side effects to come into light. Humira is a relatively new drug so there isn't as much known about it.

The main difference between Remicade and Humira is that Remicade is made with mouse proteins and Humira is made with human proteins, which I imagine are synthetically made or grown somehow.

You would think that Humira would come first since less people have allergic reactions to it than to Remicade.
Posted 8/6/2010 5:10 PM (GMT 0)
Sorry to jump back on kcolwell24's thread, but I previously posted in here.

I just got word that Humira approved me for free medication for 1 year (including the starter pack) because I am uninsured and can't get insurance.

I've been pretty miserable though. The doctor did a flex sidmoid scope one week ago today because I'm flaring really bad and he prescribed Humira for my UC. I've been taking Lialda and Prednisone (30mg) since then.

The Pred ONLY helped the frequency. I am only going several times in the morning and several times at night. But total, I'm still going 6-10 times per day. It is almost all still liquid and bloody -- and urgent.

I think the Pred is making me even weaker. It's causing my heart to race and giving me shortness of breath. To make things worse, I feel joint pain and overall very lethargic.

So, I hope to start the starter pack of Humira the day it arrives here (hopefully early next week). Anyone feeling positive that Humira will help me out!?!? Really looking for some relief here...

Brian
Posted 8/7/2010 12:02 AM (GMT 0)
Kelly, that's great news about your improvement after so much suffering from UC & side effects of other meds. You deserve many kudos for a long, brave struggle. I remember when you 1st posted; the doctors weren't sure what to do. Continuing best wishes! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/25/2017 11:51 AM (GMT 0)
Hey all! I am 16 weeks pregnant and was admitted to the hospital with a crohns flare. They did imaging and found my entire large bowel to be inflamed and said it’s also pancolitis as well as crohns.
I was on Remicade last year but had a traumatizing infusion reaction two weeks in. I could not breathe and the little breaths that I could take made me hyperventilate. This went on for 8 weeks...till all the medication was out of my system. Now they put me on prednisone and want to start me on Humira. I’m really scared of possible reactions now after going through that. Does anything think switching is a good idea? I don’t see how it is being that the two drugs do the same thing.
Posted 10/25/2017 12:19 PM (GMT 0)
Welcome to the forum. I'd ask about Entyvio given your reaction to remicade. Remicade and Humira are very similar medications (both TNF-alpha blockers). Entyvio has a different mechanism of action (a MADCAM1-blocker).
Posted 10/25/2017 12:40 PM (GMT 0)
Ok I will ask them thank you. The only thing they mentioned when I said I want to first try other drugs is that Humira will get the job done the quickest. They think it’s the most effective for my situation. I’m having a hard time arguing that because I just don’t have knowledge of these other drugs.
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