Remicade has failed me...

[hunniebunn88]

I just came from my colonoscopy today, and got some not so good news.
Flashback...
I have been on Remicade for about a year (almost to the week) and have been feeling relatively well. I have had to do some adjustments with increasing the frequency (8 to 6 to 4) as I was getting many of the associated side effects of Crohn's (joint pain, headaches, blotches). But my Crohn's went from severe to extremely mild, and I could deal with everything else as long as I wasn't flaring.

Back to the presesnt...
I get out of the procedure, and he comes in with a frown and says "well the Crohn's has gotten much worse than we thought". I had multiple ulcers and the Crohn's went from very mild to severe again, so in his words "the gold star medication isn't working". I have lost 25-30 pounds in the last 2 months which he is very concerned about, granted I don't hate that, but I hate not being able to be how I was.
I was given 3 options; double my dose of Remicade, start Humira, or get surgery.
At this point I am tired of being sick, so I was just going to tell the doctor to do the surgery right then and there. :thumleft:
Anybody have Remicade fail them?

 

[tiloah]

I "failed" on Humira about three years after starting it, if you count having to have surgery as failing. (I do, my docs don't). I guess it'll be Remicade for me next, if my GI decides I need drugs.

 

[Lydia]

Try a double dose first, then humira, then surgery. Surgery is always the last option for me.

I developed a lupus like syndrome which made my muscles and joints ache everyday, so I had to stop the remicade. I am on imuran now, as I want to save humira for a really rainy day.

 

[Nosick]

I had the same experience with Remicade. Worked great when I started but then developed anti-bodies to it. This can be checked with a blood test. I think I developed anti-bodies to it when I got pneumonia and was given an antibiotic IV when I went to the hospital.

The next step (for me) was Humira but my insurance company stalled approval so long that I went downhill quickly. I was lucky and found a Chinese herbal treatment that has worked wonders for me so I never went on Humira.

 

[Tesscorm]

Hi Ashley,

Wow, its so tough to make these decisions! What is your doctor's preference of your options? I hope whichever you choose takes you into remission quickly.


Nosick - that's great that you were able to go into remission without drugs! What was the Chinese herbal treatment that worked for you?

 

[Nosick]

The product I take is CCherbal. Been on it for about a year. Not sure if this is the same but it sounds similar:

http://www.crohnsforum.com/showthread.php?t=21043

 

[hunniebunn88]

My only concerns with doubling my dose is $12,000/4 weeks for treatment (that I know my insurance company won't cover).
My doctor has really said it is up to me, but my mom wants me to get a second opinion...
I am leaning towards the surgery as I am off school till the first week of January, and going straight through and graduating in October. So I don't want to have to miss any school d/t Crohn's.

 

[tiloah]

Is your Crohn's very localized? One of the reasons surgery was such a good option for me was that it was only in one spot.

 

[hunniebunn88]

It's in my ileum, and from what my doctor has said, it is just in one spot.

 

[Lydia]

Sometimes surgery can kick off a really long remission. It may be worth a shot. Its a lot to think about.

 

[SdN]

If you absolutely cannot afford doubling up on Remicade I'd recommend surgery or Humira otherwise if there's any chance of you affording the extra Remicade I would at least give that a shot first.

 

[Picarat]

I was only on Remicade for a few months, and I had a Serum Sickness style reaction. A rash broke out on my entire body, and at first we thought it was chicken pox, but later after being hospitalized, a study was found that other Remicade patients had gotten the same symptom. I also developed joint problems, and they become sore if I overuse them, or put them in an uncomfortable position (the doctor's aren't completely convinced this is from Remicade, but it seems highly likely, since it was only a problem after Remicade, and came at the same time as the rash) Before all these side effects, it worked wonderfully, so it was a big disappointment to see this happen. So, Remicade failed me as well.