Is it possible to change treatments when in remission?

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TurnipFish
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Date Joined Jan 2018
Total Posts : 16
   Posted 1/13/2018 5:59 PM (GMT -6)   
Hello there. I am currently at the hospital because of a pretty bad flare. I was on Remicade but now I am at risk of having to start Entyvio because of a possible "no-response".

My doctor tells me that I have to be patient and, for now, accept that I will have to "endure" two years with either of these treatments. My concern is if, after these two years (that I imagine are more aimed to "control the disease" and remissions), I will be able to change from either of these treatments to another one, for example Humira. I'm asking this because I do not want to feel like I have to be attached to a hospital to have a good life and my plans for the future include travelling a lot and being away from home for more than 8 weeks in a row and I think that an injection would let me be more independent.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4213
   Posted 1/13/2018 6:52 PM (GMT -6)   
You can alway switch treatments. But if you want to be on humira, ask to start it now. Humira and Entyvio are about as effective. Both Humira and Remicade are similar in how they work. Entyvio is a bit different.

If you do not respond to TNF blockers, than Humira will not be an option.

I think two years is a bit long. In 12 to 18 months it should be clear if a biologic is going to work sufficiently well. It will take maybe only 6-10 months to know if you are responding well enought to see if the longer time frame gives remission.

You cannot think about the future the way you are saying. Whatever drug works - injection or infusion, you are only "on it" until something much better comes along. IF you can't do Humira because TNF blocker does not work for you, then you may be on an infusion drug for a while - but there will be a non-TNF biologic that is injectable or pill form, or even a probiotic treatment, or a gene expression treatment at some point. You may have to delay extensive travel 2-3 years if you are on an infusion, but you can take trips for several weeks, and you will not likely be on an infusion forever because new option become available.

However, you cannot decide to try or not try an infusion drug now because of the lifestyle you hope to have in future. You have to find the treatment now that keeps you form losing you colon now. Or keeps you from getting colon cancer later.

If you are not in a life threatening situation, ask for 6 or 10 months to see if you respond to Humira before trying a different type of biologic.

Good luck
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

TurnipFish
New Member


Date Joined Jan 2018
Total Posts : 16
   Posted 1/13/2018 8:45 PM (GMT -6)   
Well, I did already talk to my doctor about trying Humira, but all he told me was "Keep in mind that you will go through Remicade (or Entyvio) for two years, and then we'll see".

I did hide some important info before. I'm currently hospitalized and I even was at the risk of undergoing through an urgent colectomy. Fortunately, Remicade was still in my organism helping out and the risk of surgery is getting smaller and smaller now (according to the doctors). Next week, they'll run some tests to find out if Remicade is still an option for me or if I have to move to Entyvio. Let's hope for the best!

I have been reading about new treatments and hopes for the future and came across the name Xeljanz and it does looks promising!

You are right, we never know the future and modern medicine has been evolving at an astonishing pace. Reading that really makes me happy and hopeful and I will not let the infusions stop me from achieving my dreams, I guess I'll just have to work it out, somehow. Thank you!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16744
   Posted 1/13/2018 8:57 PM (GMT -6)   
I am not sure I understand anything they told you, or you think they are telling you. If you're responding to remicade, you will stay on it until you stop responding, or flare up again, it could be years. Even in the case of a flare up, you will continue remicade, change the frequency or dosing, and possibly take steroids and other meds to attempt to continue remicade. If you do not respond, you will likely have to wait until you know for sure you're not responding. They can run tests to see why this may be the case, but some people show no signs and just have no improvement. In that case, they may let you try one more anti-TNF, like Humira, but the chances of responding to that after being a non-responder to remicade, is less likely. If you also do not respond to that, you would probably move on to entyvio at that point. You have about a 50% chance of responding to that drug. Xeljanz is a trial drug. If you live near a place where someone is conducting the trial, you can try to get into it. but i think you would have to wait until you were off biologics for a few months before being considered a candidate for the trial. That's how the trial here was anyway, and I opted for surgery because I didn't want to have to worry about expensive drugs, hospitals, infusions, diets...
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

TurnipFish
New Member


Date Joined Jan 2018
Total Posts : 16
   Posted 1/13/2018 9:20 PM (GMT -6)   
This whole situation has been very weird.

Now I'm just hoping to keep on Remicade...
Thank you for replying.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4213
   Posted 1/14/2018 11:38 PM (GMT -6)   
If you do respond to Remicade, you could switch to Humira with the hope that another anti-TNF would work as well.

But it sounds like 12 to 18 months is requested to see how remicade does.

good luck
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

FlowersGal
Veteran Member


Date Joined Feb 2017
Total Posts : 501
   Posted 1/15/2018 8:11 PM (GMT -6)   
I'm on Entyvio and if I were you, I wouldn't be so reluctant to switch -- IF -- remicade isn't working for you. Entyvio infusions only take 30 minutes every 8 weeks after the loading doses, so it's not nearly such a big time commitment/tie to a hospital as Remicade is. However, if Remicade is working for you, then you should stay on it.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)

Connor77
Veteran Member


Date Joined Jul 2016
Total Posts : 523
   Posted 1/15/2018 11:10 PM (GMT -6)   
Just wanted to add that I'm on Entyvio every 4 weeks. I started at 8 but it stopped being as effective so they increased the interval.

Depending on where you travel, you can probably get your Entyvio infusion wherever you go. I know they have offices in every major city in North America. I was told by my Entyvio coordinator that it would be no problem to deliver my medication to another hospital as long as it's within their network.

But if you're thinking exotic travel then I dunno. There's also insurance implications.
DX left-sided UC 2015, 3 fulminant flares since then
Diagnosed with mycobacterium avium paratuberculosis (MAP) September 2017
Commenced AMAT (rifampin, clarithromycin, clofazimine) November 1 2017
Intolerant to clofazimine, stopped taking
Others: prednisone 10mg, Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
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