Fistulas

[TammySue62]

ANOTHER FISTULA

I don't believe this another fistulae.
This makes # 4 for me. I wondered why it was hurting more then usual on my bum.
I just hope that I can avoid or postpone the surgery till after x-mas

Why won't they stop draining or close up? This has been an on going problem for me since last year. I am hoping that the Humria will help.

Does anyone no? They pulled the plug on me and remicade about 8 weeks ago and this is making my fistulas drain more. My doc decided that the remicade just wasnt working for me any more and decided to try the Humria.

Did you no that once you quit taking remicade and switch to Humria that you can not go back to remicade.

I will have to read up on Humria. My first needle is scheduled on Friday AM. I hope everything goes well.

TAMMY

 

[Kev]

Hey Tammysue62... As for the whole stopping remicade and not being able to go back to it again, my GI told me that it's not a hard and fast rule. Apparently, what happens is that experience has shown that once you stop remicade, the chances of developing anti-bodies that could cause a bad reaction go up, while the body also tends to develop a sort of resistance, making the benefits from it go down. So, with increased risk and lower benefits, most docs prefer to keep you on it.. OR, if you come off it, don't want to take the chance to put you back on it. It COULD be done, if it was an emergency or something, but when they weigh all of the factors, most prefer not to do it. That's the general 'rule' of it.

Now, going off of remicade, onto humira, then off humira back to remicade, that could be a totally different situation. since humira is essentially a better form of remicade, there may be something that does prevent the switchover. Or, since they are so alike, if humira wasn't working, it's possible that going to remicade wouldn't make any difference anyway. But that's just a guess on my part, OK?

 

[Jeff D.]

Hey Tammy it sucks that you have another fistula. I hope you feel better soon and that it heals up well. How are you feeling besides that? Best of luck

 

[Wiles]

I was on humira for a year or so, I didn't get any fistulas while I was on it, and the one I already had stopped draining. A few months after I stopped I got a new one, and the old one started draining again.

Good luck with humira. I liked it better than remicade, a needle is a lot less of a hassle

 

[Dekar]

wtf 4 ?!?! thats ridiculous. how long was the interval between each new fistula?! im so scared of getting more

 

[TammySue62]

Hey guys thanks for the replys.
Kev you always have an interesting but logical answer. It niceto hear your imput!!!!

Jeff
Thanks for caring. I am feeling better for a change. LOL AS for the fistulas they have been an on going problem for quite some time now.I saw the Doc today and he said that I seriously have to think about having surgery.The stoma thing and I said I just cant go there yet?I have been avoiding this for 2 years now. I guess my numbers up.
I also had my first Humria needle today. Ouch 4 needles that hurt. Not so much the actual needle but the 10 seconds of the drug going in.Almost like a burning sonsation Wait and see if it helps the drainage problem. I hope so. PRAY

Wiles
You have been lucky.They are a royal pain in the ass.

Dekar
I cant remember how far apart they were.Like I said its been an on going pain the ass for me since about 2 years now? I just hope that the Humria clicks in fast on the draining and pain soon

Tammy

 

[Kev]

Well, I'd have to say hearing my input is definitely better than hearing my 'output'

 

[saidinstouch]

First, I will say I feel your pain (quite literally) because I have had an open fisutla for the last two years after my surgery and it was an excruciating abscess for 6 months before that. I had to take a leave of absence from school in order to return to health and that included remicade infusions at 10 mg/kg(normal is 3-5 mg/kg) every month rather than every 2 months.

I hope your surgery goes ok and that the humira works for you. I've been on it for two+ months now trying to close my fistula once and for all. I can say this from my experience, while the fistula remains the same, the stomach pains and general feeling are better than remicade and you dont have to deal with the annoyance of an infusion day either (those were absolutely miserable). If your doctor feels the remicade isn't working, then take comfort knowing the humira should be very effective for you and the shots really aren't that bad (except for the loud pop of the pen). It is also MUCH cheaper.

Good luck to you and feel better!

Now, I'll try to shed a bit of light on the scientific reason behind being unable to go back on remicade.

The reason you can't return to the remicade after going off it for a period of time is that it is a chimeric antibody (ends with infliIMAB) as compared to a humanized antibody like humira(ends with adalimUMAB). This means that the protein is only approximately half humanized (I'm not 100% certain of the percent but it is a good example) with mouse Fc receptors to attach to the TNF-alpha. Normally with remicade, your biggest infusion concern is the second infusion because that is when your body has to decide if it will accept that part of the protein which is mouse or not. If it does not reject the remicade then, it will continue to accept the remicade protein for as long as you have a continual concentration in your bloodstream, though over time it will slowly be rejected. This is why you typically have 2-3 years on remicade before it loses its effect. Luckily when your body rejects the remicade after time you just notice it loses its effectiveness and typically you have little to no real reaction.

That explanation might be as clear as mud to some of you, but the basic idea is that if your body has the chance to determine it wants to reject the remicade, then it will continue to do so in the same way you cannot get the same cold a second time (though with so many it doesn't seem that way). Essentially your body builds antibodies to the protein and destroys it as foreign similar to how it fights sickness.

Now with humira instead of being part mouse protein, only the Fc receptors are mouse protein and with such a small portion being foreign, the body has little to no chance of rejecting the protein. However, it is still a different protein from remicade so the effectiveness of remicade should not determine the effectiveness of humira and vice versa. This is of course unless TNF-alpha inhibition is not effective in treating your crohns disease in general.

Unfortunately, this difference in protein formulation also means being on humira will most likely not give you a buffer to return to remicade. I could be wrong but the way monoclonal antibodies work, it is highly unlikely. Some research into this would be interesting, though I'm not sure if any conclusive studies of this nature have been done due to humira being approved for crohns so recently and most doctors will not test with a patients well being (i.e. take them off remicade to put them on humira then put them on remicade again) so we are unlikely to find a result that is conclusive.

I don't know if this helped anyone, but hopefully you'll understand a bit more about how remicade and humira work. If you read all of this props to you because its a bit of an essay apparently, though I have intended it to be valuable to some people wanting a bit more information.