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Likely transition to Remicade....But?

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Posted 12/19/2012 10:54 PM (GMT 0)
Had a GI appointment yesterday. After a recent colonoscopy, my Daughter is showing disease activity which has spread to her cecum. The nurse also said that the biopsies showed microscopic activity throughout her large intestine.

This was certainly disappointing news of course. The GI was already recommending a change from Imuran to Remicade after the colonoscopy, and yesterday was a further discussion with the nurse about that.

We were hoping to avoid anti-TNF's for awhile considering that she's only 19, but if that's not possible, then we'll likely make the transition.

Then came the shock. The nurse said that they want her to stay on Imuran along with Remicade. I was truly shocked at this recommendation. She said that the success rate was much higher with Remicade when combined with Imuran. I know several people taking Remicade, and not one of them have resorted to combining with Imuran right at the start.

Does anyone have any experience/advise about this current dillema?

s

Posted 12/20/2012 4:26 AM (GMT 0)
When I started Remicade in 2004, I was also placed on Imuran. I took both until 2007 when Remicade stopped controlling my Ankylosing Spondylitis. After my third loading dose of Remicade my Crohn's went into remission in my TI. I continued on Imuran alone until 2008.

Imuran with Remicade has been shown to lessen the likelihood of adverse reactions to Remicade. Imuran lessens the likelihood of having infusion reactions. That said, there was a study[ies] done [can't recall the year] that showed an increase in adverse reactions when the two meds were combined.
Posted 12/20/2012 5:25 AM (GMT 0)
This was discussed at length at a conference I attended in September.

The latest thinking is that it is best to use combined therapy when possible.

Imuran along with Remicade has been shown to be more effective than Remicade alone.

Imuran along with Remicade has also been shown to reduce the likelihood of developing antibodies to Remicade, meaning patients tend to be able to stay on Remicade successfully longer than they would without the imuran.

The risks of the two together are not much different than the risks of Remicade alone, with the only exception being they are very cautious about using the combined therapy on young males because of the risk of HSTCL.
Posted 12/20/2012 11:59 AM (GMT 0)
Thanks for the relies guys,

It just scares me a bit too much to cosider this option right now. Anti TNF's haven't been around long enough to get a full evaluation yet. Then to combine with Imuran?

I have nothing to base it on of course, but, find it difficult to believe that the risks of the two together aren't much higher.

Right now, I'm seriously considering a second opinion. The problem of course is you can't just pick a GI out of the yellow pages.

Posted 12/20/2012 6:22 PM (GMT 0)
most people i know with IBD do an immunosuppressant with a biologic because it's supposed to help the biologic work better. that's what i did but it eventually stopped working anyways. go figure.

i'd definitely give it a shot though. remicade put me in remission pretty quickly but i was also on a lot of other drugs at the time, too. could have been a combination of things. oh i don't know! it's tough to know when a doctor wants you on everything at the same time!
Posted 12/20/2012 6:24 PM (GMT 0)
Well, I think a second opinion is often a great idea, but in this case the second opinion will agree with the first if they're up on the latest research, or they'll disagree with the first opinion if they're not.

Sorry if that sounds blunt, but that's likely the truth.

I'm out of state visiting family right now so I don't have access to the research presentations from the conference. If I had them, I'd give you some sources.

I do remember that the statistics for opportunistic infections and for deaths showed that, by far, adding Prednisone to the mix was the worst. Remicade on its own or with imuran was low, but adding Prednisone to Remicade made the rates jump up quite a bit -- a whole lot more than adding imuran to Remicade.

Remicade has been out for over 10 years and has been taken by millions of people, so it does have a lot of data on it. You are correct that it doesn't have a lot of long-term data, meaning 15 years or more, but then again most people don't end up taking it that long for one reason or another.
Posted 12/21/2012 12:55 AM (GMT 0)
Yes "beave",

You make alot of sense. You actually sound like you're in the medical field. One of the reasons that I didn't agressively seek a second opinion earlier on is that I was afraid that it would likely be more of the same.

The clinic is booking another MRE before we likely decide on a med change. I was wondering if it could just be a flare up that could resolve in time. Does disease activity always mean that it's time for a change in medication? Maybe wishful thinking on my part.


 

Posted 12/21/2012 1:30 AM (GMT 0)
Flareups can resolve on their own. I know, because it has happened with me a couple of times.

But for a younger person with clear evidence of disease activity despite taking imuran, I personally wouldn't take the chance of just hoping/wishing it will go away on its own. It might, but it probably won't, and instead it will probably get worse.

And one other thing that has become clear with the 10-15 years of experience in using Remicade is that it's more effective when used early rather than later, ie, getting ahead of the disease before things get bad and lots of scarring happens that can't be reversed.
Posted 12/21/2012 2:21 AM (GMT 0)
Once again beave, you're very inciteful. What bothers me even more than the potential risk is, what if it fails after a short time? Then what? I know that Humira would be next, but I think you see my point. Getting near the end of the line in terms of treatment before 20 yrs of age.

I even asked the GI nurse that exact question, and she said that there's new medications coming in about 2 years.

That wasn't very comforting. I know there's no miracle solution out there for what I'm asking. I just want to make the best decisions possible for my Daughter, as any parent would.

Thanks for your replies, they are very helpful.

Posted 12/21/2012 2:58 AM (GMT 0)
73monte:

Understand fully what you are struggling with. My 17 year old son had his colonoscopy 2 weeks ago, colon clear, ulcers in the ileum at his resection site, biopsies reveal moderately active crohn's. This time round he was put on budesnoide 9mg so he got a break as remicade had been mentioned as a possibility before his scope. Two weeks on Budesnoide and no improvement hopefully he will see results soon.

Like you getting very nervous as to where all this is going it is such a worry at their age. Currently he takes Asacol, 6mp, Ferrous Sulfate, probiotic and the Budesnoide. One small bowel resection Oct 2011.

Good Luck and I will be following closely to see what decision you make.
Posted 12/21/2012 3:39 AM (GMT 0)
73, your concerns are quite common, and definitely understandable.

If Remicade doesn't work, at least you'll know. You're right there is also Humira, then Cimzia, plus as your nurse mentioned, there are several meds in the pipeline (some similar to Remicade/Humira, some that are completely different mechanisms of action). One presenter even said they are studying a Chinese herb and getting preliminary results good enough to do more studies. He mentioned there could be 3-5 new meds out by 2014 and possibly 6 or 8 or 10 or so in the next couple years after that.

So don't think of Remicade as a last resort, but as something to possibly control the disease for the time being. There will be several new meds coming soon if the Remicade doesn't work or works only for a while.
Posted 12/21/2012 3:52 AM (GMT 0)
I might question the combo more. Some conferences I've attended (although I'll admit they were at least 4 years ago) were at that time suggesting that Anti-TNF should no longer be combined with Immunosuppresants (6MP, Imuran). Dr. Doug Wolfe led that session and he's the crap. So yes, I would venture a second opinion.

Side note: The anti-tnf's are super scarey in that we don't know as much about them as they haven't been around as long, but they are more targeted and seem to be working with so many. Further, I think they are great in pediatrics, because they are also easier to manage and we can better ensure they are taken....Compliance is crucial.
Posted 12/21/2012 4:04 AM (GMT 0)
jdiane, you're half right. :-)

At the conferences 4, 5, 6 years ago, they were indeed recommending "monotherapy" (meaning just Remicade). The scattered cases of HSTCL were scary, even to docs. There wasn't enough clear data at the time about the risks/benefits of combination therapy for them to recommend it, and the cases of HSTCL made them be very cautious and just recommend Remicade on its own.

They made it quite clear this year that they have accumulated so much more data in the last 4 years and that it points to using combination therapy, because it has a definite benefit over monotherapy and very little increased risk of anything (with the exception of young males)..

And they also emphasized, again, that these meds are safer than prednisone, by far. Yet so many IBDers take pred and don't worry about it, while at the same time they're afraid of Remicade. The data shows pred to be much more dangerous, statistically speaking.
Posted 12/21/2012 4:12 AM (GMT 0)
Pred is the scarey evil demon child, I always go with don't do it. Thanks for the info Beave. I've been out of the research GI area for awhile and appreciate the info. :)
Posted 12/21/2012 4:26 AM (GMT 0)
When I was on remicade I had MTX shots once/week. When I discontinued the MTX I did develop antibodies. My rheumy said it was like the flood gates opened! I had Remicade induced Lupus. In my experience remicade is the only drug that closed my fistula's. I really think that aside from surgery this is your daughters best chance at getting her life back. If you don't like immuran, maybe MTX is an option. I know you are in Canada, and Cimzia has not been and according to my GI will not be approved for crohn's disease by the FDA. I have been on Humira for the last 5 years, and it seems to be doing its job. How does your daughter feel about all of this?

Julia
Posted 12/22/2012 12:45 AM (GMT 0)
Thanks again for the replies,

The old research seems to conflict with the new research, and who knows what the continued research will show.

Dingleeire: your son seems to parallel my daughter somewhat. Looks like you'll have to face some of the same decisions. Appreciate your understanding. Did he have a resection due to a stricture?

Julia: My Daughter is feeling abit unsure about the whole thing. I think the toughest part for her is, that the nurse and GI direct all there questions directly at her. It's like they're offering candy or something. "Would you like some Remicade sweetheart". Believe me I don't baby her by any means. I just think it's really tough to expect those answers from a 19yr. old.

Thanks jdiane and beave.

Posted 12/22/2012 1:32 AM (GMT 0)

73monte said...
Thanks again for the replies,

The old research seems to conflict with the new research, and who knows what the continued research will show. .

Yep, you're right. I remember telling friends and family that they (presenters at the conference) were totally contradicting what they said just a few years ago. It was a bit unsettling to me.

But the reality, unfortunately, is that medical knowledge isn't perfect, and all you can do is make a decision based on the best information you can get at the time.

Good luck whatever you choose.
Posted 12/22/2012 1:43 AM (GMT 0)
73 monte:

My son had appendix removed in Aug 2011. In Oct 2011, he came to me with the same pain ended up he had a complete bowel obstruction so surgery was his only option. This was when his crohn's was diagnosed. Making a decision about medications is huge. We go back again in January to discuss his options if his current medications can't get his crohn's into remission. Making the decision to give him 6mp was the hardest decision I had to make in my life so far.

I will not give him 6mp and Remicade together if it is our next option, he also does not want to take the combo. I don't like what I read about this combination for young males and neither does he. I will be getting a second opinion for sure even if it means that I will hear the same answer. At least I will have explored and tried to get other options. I know it works great for some of the people here on the forum and I respect everyone's opinion but it is such a hard decision to have to make at such a young age.

Good luck again and I hope that you guy's can enjoy the holidays.
Posted 12/23/2012 12:39 AM (GMT 0)
beave:

Once again, I agree with you. You can only make the best decision based on the current facts and data. What you wrestle with is if the data is wrong. Also, the risk factors for being wrong can be life and death.

Dingleeire:

I SO understand what your saying. At least 6mp and imuran have been around for quite a long time. The risk of Lymphoma when combined with Remicade truly scares me as well. Right now I'm definitely leaning towards not allowing the combination of the two. I agree in getting a second opinion though. I hope you can enjoy your holidays as well.

 

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