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Ulcerative Colitis
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Posted 12/18/2015 4:25 PM (GMT 0)
Sorry for the delay on the response, thought I'd update regarding my colonoscopy Wednesday.

I don't have a follow up with my physician until next week but his words post procedure. "I'm pleased to report that everything looks normal and I'm happy with your results with the entyvio treatment." Maybe the 75%-85% figure I gave the other day isn't appropriate. Based off the procedure and my conversation with my GI post procedure I think I'm closer to 90%, the last ten percent I'll reserve for my ability to tolerate alcohol.

mk11 I'm happy to hear you're doing so well based off the fact that I think we started the treatment right around the same time-frame and have had similar responses throughout treatment. Happy to hear your updates as well as updates from everyone else. Hang in there y'all!
Posted 2/8/2016 1:56 PM (GMT 0)
Currently receiving #6! No UC symptoms (a bit IBS here and there but just minor symptoms) and no side effects. My GI said she's seen great success with my combo of Entyvio and mesalamine as a fairly benign therapy (all things considered) and no major side effects.

Want to keep updating to give hope to folks who are unsure. I was very scared to start after failing and reacting to Humira and Remicade. I am just one case but would have made me feel better to even read one positive story before I started.
Posted 2/8/2016 5:58 PM (GMT 0)
Congrats, glad you found a solution that works!
Posted 2/8/2016 6:10 PM (GMT 0)
Great news!!!! Please keep posting about this drug.
B
Posted 2/8/2016 8:35 PM (GMT 0)
I had #6 done about a week ago, fairly confident I'm in remission (per GI). I've already dropped dose on the lialda and my doc wants to get me off the imuran by this summer. Glad to hear you're well mkl11!

The takeaway for anyone new to the thread. Hang in there, this drug takes a while to kick in.

I had response at infusion 3 but it wasn't until somewhere around 4-5 where I started feeling like that this treatment might actually work.
Posted 2/9/2016 6:52 PM (GMT 0)
In the interest of full disclosure I will say I am not feeling well today. I usually have fatigue the day of my infusion, but I began to feel "off" last night and it has continued today. Achy, fatigued, and that feeling in the back of your throat when you're about to get sick/congested. I'm not congested at all but my sinsuses feel a bit inflamed. I could be getting something but right now I'm attributing it to the infusion. Hopefully it passes in a day!
Posted 2/10/2016 4:05 PM (GMT 0)
Update: I am much better today. Not 100%, but more like 90%. So perhaps I am becoming a bit more sensitive as I'm now 8 weeks between infusions.
Posted 2/10/2016 4:12 PM (GMT 0)
Glad you're feeling better. Maybe an infusion-related symptom then?
Posted 2/10/2016 10:23 PM (GMT 0)
I think so. I've had a lingering headache all day, so betting it's from the infusion too. Sigh. Oh well a couple crappy days is worth it for 2 months of good health. It is a shame we have to make ourselves sick to make ourselves better, though.
Posted 2/12/2016 5:11 AM (GMT 0)
Hello everyone! I'm new here, but I would like to include my experience with Entyvio (and UC). Asacol put me into remission for one year. I have been flaring for 1 year since then. I was having 20 bms per day. Prednisone cleared that up for about a month, but as I tapered, I flared again. I tried Imuran and vomited. Tried 6-mp and had the same reaction. Was supposed to try Humira, but couldn't because of there is a possibility that I have MS (Humira apparently can make MS worse, so they did not want to take any chances). Meanwhile, the prednisone was getting difficult to tolerate (severe debilitating leg pain), so they told me to taper. I was back up to 15 movements a day and was forced to increase the prednisone. Entyvio is my last resort before surgery. I actually wanted the surgery, but they talked me into trying Entyvio. I'm very excited about this drug because it has changed people's lives! I have had 2 infusions so far and tolerated them well. I got a little flushed and warm during the infusion both times, but nothing serious. I am only having 2-5 formed bowel movements per day without blood, but I am still on 30 mg of prednisone, so I really won't know if it's working until the 3rd or 4th infusion anyway. I will keep posting my progress as well. Good luck everyone!
Posted 2/15/2016 10:39 AM (GMT 0)
Welcome to the Entyvio log/thread Kinaydein_grrl & welcome to the forum! I don't see Uceris in your list of medications, if I were you I'd strongly advise you speak with your GI about switching from the pred to uceris as a bridge. Uceris might not be as effective as prednisone and it certainly doesn't work for all but it is a much safer steroid (http://shared.salix.com/shared/pi/uceris-pi.pdf) as it isn't nearly as systemic. It worked for me. Also you haven't mentioned either remicade or simponi, I know I'm keeping both of those open as options in the event that Entyvio someday fails. Something to consider. Also maybe a good probiotic could certainly help your cause, if you aren't already on one it's something I'd strongly think about! http://www.ncbi.nlm.nih.gov/pubmed/15984978

mkl11 how are you doing? I recollect you having some post-infusion issues? I'm hoping those issues have resolved themselves!
Posted 2/15/2016 4:02 PM (GMT 0)
I am doing better, thank you for asking! But was definitely feeling the infusion up to 3 days afterwards. This was the first time I've felt this way, so we'll have to see if it was a fluke when I get my next infusion in April. Other than that, GI-wise still doing better.
Posted 2/15/2016 4:51 PM (GMT 0)

Kinaydein_grrl said...
Hello everyone! I'm new here, but I would like to include my experience with Entyvio (and UC). Asacol put me into remission for one year. I have been flaring for 1 year since then. I was having 20 bms per day. Prednisone cleared that up for about a month, but as I tapered, I flared again. I tried Imuran and vomited. Tried 6-mp and had the same reaction. Was supposed to try Humira, but couldn't because of there is a possibility that I have MS (Humira apparently can make MS worse, so they did not want to take any chances). Meanwhile, the prednisone was getting difficult to tolerate (severe debilitating leg pain), so they told me to taper. I was back up to 15 movements a day and was forced to increase the prednisone. Entyvio is my last resort before surgery. I actually wanted the surgery, but they talked me into trying Entyvio. I'm very excited about this drug because it has changed people's lives! I have had 2 infusions so far and tolerated them well. I got a little flushed and warm during the infusion both times, but nothing serious. I am only having 2-5 formed bowel movements per day without blood, but I am still on 30 mg of prednisone, so I really won't know if it's working until the 3rd or 4th infusion anyway. I will keep posting my progress as well. Good luck everyone!

Thanks for sharing your story. I agree, on 30mg of pred, you can't predict anything. I also think 2-5 a day is a lot. Funny how people's perspectives are so varied on this. On 30mg, I would definitely be a 1x-2x a dayer. I had surgery and I am doing better than I ever did on any treatment. I wish I had done it a long time ago. I wasted all those years fighting for something that wasn't important turn

Hopefuly you have great luck.
Posted 3/1/2016 3:43 AM (GMT 0)
Thanks everyone!! I was not aware that you could switch steroids? I definitely will ask because I can't walk at all now. In a wheelchair. But they are pretty sure it is caused from the prednisone. I'm not sure if Remicade is an option for me, but I will ask. And notsosicklygirl, glad to hear that you are happy with having the surgery. I know a couple people who have had it and they live a better life than I do lol do you still need to take steroids if you've had the surgery? I'm going for my third infusion tomorrow. I'm down to one, formed, totally normal movement per day. Still on 25 mg of prednisone. I think I'll have a pretty good idea if Entyvio is working or not by the end of April. I'll keep you posted!
Posted 3/1/2016 6:27 PM (GMT 0)
I hate to say it, but I do not consider anything a success while on pred, especially if it's causing debilitating side effects to the point that you're in a wheelchair. That would be a huge NO GO for me.

I haven't taken steroids in a LONG time. I had surgery 6 months ago and I was on Uceris at the time. I guess the last time I took prednisone was over a year ago. i was hospitalized for a lung condition and they gave me steroids. I haven't taken any UC drugs since surgery. I took pain meds for surgery of course.
Posted 3/2/2016 9:47 AM (GMT 0)
That's great to know. I would like to get the surgery if it means I would no longer need prednisone. My doc says Uceris is used to treat mild to moderate colitis, but I am experiencing severe colitis, so it would not be a good fit for me at this time. What was your recovery like after the surgery? Sorry to hear of the lung problem.
Posted 3/2/2016 4:52 PM (GMT 0)
mkl11 or someone else can answer, what is CRP? Is it to check the antibodies? If so what is the high & low number?

Thank you
Posted 3/2/2016 9:27 PM (GMT 0)
CRP =c-reactive protein. It's a blood test that measures the amount of inflammation in your body. My last CRP was 0.1. The reference range is anything less than 0.8 is good.
Posted 3/2/2016 9:32 PM (GMT 0)
Thanks ipoop, so what type of test to check antibodies?
Posted 3/2/2016 11:46 PM (GMT 0)

Kinaydein_grrl said...
That's great to know. I would like to get the surgery if it means I would no longer need prednisone. My doc says Uceris is used to treat mild to moderate colitis, but I am experiencing severe colitis, so it would not be a good fit for me at this time. What was your recovery like after the surgery? Sorry to hear of the lung problem.

I agree about the Uceris. I tried it with a severe flare up and didn't get much relief sad I did a 3 step surgery, so it was over the course of about 5 or 6 months. Each step was difficult in different ways, but overall, I am extremely please and thankful I did it. Even if I were able to get into remission, and I wasn't, I don't want to live forever worried about the next flare up.
Posted 3/3/2016 1:11 AM (GMT 0)
UCmas, you're on remicade, so the antibody and concentration test is done by your choice of Prometheus labs or by Labcorp in the usa.

Prometheus labs, calls their test the anserifx for infliximab/remicade www.anserifx.com

Labcorp's is Infliximab Concentration and Anti-Infliximab Antibody

Essentially the same test, labcorp's might be better covered by your insurance.
Posted 3/3/2016 2:25 AM (GMT 0)
thanks again ipoop.
Posted 3/3/2016 4:23 AM (GMT 0)
Hi everyone. I too am new and would like to contribute to this post. I just had my first infusion of Entyvio today. Things went fine. Hoping that this will help me sooner rather than later.

A little about me. Was diagnosed in Dec 2014 via colonoscopy. I have severe pancolitis. Up until a 3 weeks ago, I was on Humira, Prednisone, Imuran and Asacol HD. I just was taken off Humira and Asacol.

I find myself to have a unique form of Ulcerative Colitis. I really only have urgency and bowel movements of around 10-12 a day. That's really it. Rare do I have bleeding and mucus and I do not have any pain. I don't know how common this is. The urgency though drives me nuts and prevents me from doing a lot.

Here's hoping that Entyvio can solve this. Otherwise, I may be looking at surgery, which I do not want to do.
Posted 3/3/2016 3:30 PM (GMT 0)
For those of you who Entyvio is not working for and can't use an anti-tnf like Remicade, Humira, Simponi, and Cimzia my GI was able to get my insurance to approve Stelara for me. So it might be an option for you; at some point it will be approved for CD, they submitted the paperwork to the FDA last year for approval.

I chose to go with Stelara instead of Entyvio because they think that I might have CD and it has a better treatment profile for CD patients compared to Entyvio. I also didn't feel like skipping a half a day of work and going for an infusion.
Posted 3/3/2016 3:32 PM (GMT 0)

ks1905 said...
For those of you who Entyvio is not working for and can't use an anti-tnf like Remicade, Humira, Simponi, and Cimzia my GI was able to get my insurance to approve Stelara for me. So it might be an option for you; at some point it will be approved for CD, they submitted the paperwork to the FDA last year for approval.

I chose to go with Stelara instead of Entyvio because they think that I might have CD and it has a better treatment profile for CD patients compared to Entyvio. I also didn't feel like skipping a half a day of work and going for an infusion.

The entyvio infusion is seriously under an hour total. I guess with driving to the infusion center and waiting around, it ends up wasting a half day regardless turn
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