I need to make a choice..

[Crohnos01]

I am new to the forums, and put a post under the Remicade section, but didn't get a lot of hits, so I thought I would give it a try here....

I was given a round of Remicade treatments about 15 years ago and the general concensus at the time was to only give a few rounds of treatment, and if it worked, not repeat unless the disease became active again. 15 years later, I am no longer in remission and have been told I either need to choose Remicade or Humira for a treatment regimine. Of course, the doctor also disclosed that they have now learned about the antibodies that build up when you stop and then restart the Remicade infusion. The reactions to the Remicade look pretty scary if you have them.

On the other hand the reactions to the Humira look just as scary and there are a few more of them listed even that there are on the Remicade.

Does anyone know what the percentages or people having a reaction when restarting Remicade is? Or is it one of those deals of it's not if you will have a reaction, just when?

For those of you who have switched to Humira from Remicade, what have your experinces been between the two drugs? If you had a choice of either one, which would you choose?

Thanks for any input,

Dwight

 

[EthanPSU]

I started on remicade and am now on humira. I def like humira more because it is way easier and more convinet to do.

 

[Crohnos01]

Thanks Ethan. Yeah the need to go to an infusion center is definitely a drawback to the Remicade treatment. From what I have read, it seems like the pain related to the Humira injections would cancel that out though...yes? When I read things like people are "jumping" and "crying" because of Humira injections, I have to think its worse than your average injection....

How about how you feel overall in Humira vs. Remicade? Energy level? Pain? Side effects? Do you have a preference of one vs. the other in any of those regards?

Just to hijack my own thread, has anyone ever heard of treating Crohns by ingesting a Hook worm or Whip worm? My daughter thinks there is some research that indicates that Crohns doesn't exist in third world countries because they aren't as clean as we are here and that the presence of parasites gives the over active immune system something to attack other than your own guts.... Not sure I buy into that, but that's what she said. My response was "maybe they don't have Crohns in third world countries because the patients die before they are ever diagnosed" which seems just as likely. I had an emergency resection 18 years ago and only just barely survived. Had I been in a third world country, the outcome would no doubt been different.

 

[Mattannika]

Hi Crohnos01 and EthanPSU,
I have never been on either, Remicade or Humira. But my gastro doc recommends that I get on one of them, soon. I was just diagnosed recently and am currently on Predisone and Apriso, but she wants to get me off them asap, and tapering has already shown problems. She mentioned what you Crohnos01 mentioned above, that when you get on them and then get off them for whatever reason, your body might show adverse reactions when getting back on them...I was planning/hoping to get pregnant within the next year. Obviously that won't happen unless I am in remission and I have way to go it seems. But I don't think I'd want to be on any drug at that time....so I wonder, does it make sense for me to get on, knowing I'll need to get off an then on again? My Gastro doc says it is safe to be on humira while pregnant as the molecules will not make it through to the baby, but then again, will they have more research 5 years from now that prove that wasn't true? I'm scared enough of going on biologic drugs, well, any drugs really.....however, when asked which one she would chose, my doc said if it was her, she would go on humira. That's the only one humanly derived...

 

[annawato]

i have been on both remicade and Humira. Started on Remicade and after several months had no real improvement so switched to humira. Humira is so much easier - not having to go to hospital for infusion, not having to be cannulated which they have problems with me. Pretty much same reactions after both, i.e. tiredness. After a year on Humira I had a bad flare so we switched back to remicade, I didn't develop any infusion reaction just now have all the other hassles associated with it and have had two bad flares as in hospital for weeks and weeks so really don't think its working. but there are now no other options so staying on it until I can get on an experimental drug.
In your case it seems like you had a really good improvement from the remicade - 15 years remission is great! So I would definitely try it again - the infusion centre will be on a lookout for any reaction and will probably give you steroids and antihistamines beforehand to alleviate any symptoms.
I never found giving myself the humira injections a problem. Mind you I think I'm missing a few nerve endings in my tummy from repeated resections. its certainly better than having a cannula put in its and all over and done with in a minute rather than having the hassle of hospital. All the best and let us know what you decide and how it goes.