HealingWell
Search Close Search
☰

Major Flare just added Entyvio

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/15/2018 10:31 PM (GMT -5)
I had a bad flare end of last year and went on Remicade in January and it worked amazing up until the last week of September when I noticed a touch of blood. Since then it has only gotten worse by the day. Last injection of Remicade was Oct. 2nd went to the GI and was put on prednisone 40mg then taper down over a month. Also had a stool check, and discovered a few days later I had c diff. Started 2 weeks of Vancomycin, but still flaring. This Monday had a flex sig done and GI says moderate UC 25cm up and put me on Rowasa Enemas twice a day. Had lab work done 2 weeks ago came back with antibodies to Remicade so I got switched to Entyvio and got the first injection today. I’m having severe abdominal pain and bloody diarrhea multiple times a day but mostly in the morning and evening. Not sure how long this should take to bring relief, but currently on Entyvio (day 1 granted), Rowasa 4 days, and down to 20mg prednisone. Seems nothing has touched this flare so far, and I’m thinking it’s getting worse. I’m sure there is some stress involved this go around, but it’s more delayed, long story short - our 5 year old son was diagnosed with a malignant brain tumor on July 6th and has had a major brain surgery and 4 rounds of chemo already. For the first 3 months of his diagnosis I was still in remission, but I might be feeling the stress now and the c diff blew it out of control. Our son is doing amazing now though, a true walking miracle, God is good and has blessed us immensely. Any ideas out there, I’m now the one on the struggle bus haha?
Thanks
Posted 11/16/2018 12:30 AM (GMT -5)
I’m so sorry about your son’s diagnosis, but very happy to hear that he’s doing well!

Have they retested you for c.diff? Are they sure it’s gone? I got an awful case of cdiff last year and it took a ridiculous amount of time and medication to finally kick it. I ended up having to take both flagyl and vancomycin at the same time. The vancomycin was ether double or triple the usual dose and the flagyl was double or the same dose as usual for cdiff. I can’t remember the exact details, but they kept having to increase the meds and I ended up staying on both for over a month. C. Diff can be very difficult to get rid of, and it may explain why your symptoms are not improving at all.

Good luck. I hope you find some relief soon.
Posted 11/16/2018 4:43 AM (GMT -5)
Redeem.....I'm SO very sorry about your little boy's illness but hope all goes better from now on. I shall try to follow your progress. In my useless opinion, stress is a major role for UC...at least I'm pretty sure it is in my own case. I was first diagnosed around the time that both of my elderly parents passed away ( within 3 months of each other); and some lung damage I'd acquired while in the military, turned into something bad. I was forced to retire from my job before I wanted to do so. This was all within the same year. Thank God my wife is an unusually amazing person and helped us get past it all. Until then, I'd never had any gastro problems whatsoever. Now...LOL...my stress begins to rise as soon as I step out of our house and away from my home bathroom. Knowing stress is my enemy, I've tried to deal with it over the years. The human brain is an amazingly complicated thing and trying to control it is a real job sometimes. Talking with the right people, using the correct medications, and knowing it's a part of your particular problem will help. The really hard part is finally finding that 'right' combination. Good luck to you and know things ALWAYS work out for the better. NEVER give up!
Posted 11/16/2018 9:23 AM (GMT -5)
Wow. Your whole family should get some sought of reward for going thru what u have gone thru. Having bad UC flare is tough enough. Add your sons tumor/surgery,it's just don't think just move and do what's needed to get thru each day. Can't be easy. Your a power of example to many people. I had UC for 32 years,last 10 yrs were tough. 2008/09 bad bad flare. Took 9-10 months to get me back to normal but was more prone to flares after bad case of pneumonia/antibiotics. Couldn't work. Life was tough. Went on 6mp and I Quess it helped. Couldn't get Humira in New York for UC patients, only Chrons. Keep trying meds and working with Dr. I had surgery this year and it was my choice. No emergency surgery. Colon wasn't working very well and no biologics for me bc they lower your immunity. I have my life back. If u ever have to go the surgery route it does work. I hope and pray u get remission ASAP. God bless

Post Edited (3timechamp) : 11/16/2018 9:00:01 AM (GMT-7)

Posted 11/16/2018 1:21 PM (GMT -5)
OMG. I can't imagine -- don't even want to -- having one of my kids be so ill, especially when they're so young. I wish you all the best and even more to him! Stress was definitely a factor in my uc diagnosis. I woke up 3 weeks after my mother's funeral (after a very long stressful 4 years of her debilitating dementia) with bloody diarrhea that proceeded quickly from bad to worse. After a year of on and off steroids we went with entyvio and it was my ticket to remission. I sincerely hope it's yours as well. But do take care of your stress as I know from experience that it can interfere with healing. Don't do as I did and try to ignore it so you can be strong for everyone else. Please keep us posted. FYI it took me about 4 months to get to remission but during those months I was greatly improved from before plus was able to get off the pred for good.
Posted 11/16/2018 4:46 PM (GMT -5)
Redeemed
I also want to say that I can't imagine being under that amount of stress and it could definitely trigger a flare. I agree with Crispix regarding the C diff. I had it too and it took 3 rounds of meds, flagyl 10 days, vanco 10-14 days and then Dificid for 10 days. The Dificid is what did the trick. C diff causes very bad abdominal pain and can mimic a flare. Just know that the toxins are what count ..not the PCR. Your PCR will probably remain positive for awhile because you just had C diff. Get retested. Did they even try to increase the Remicade dose first? I don't know what to say other than this disease really sucks and I'm sorry that you have to deal with your 5 yr old at the same time. Hugs and prayers sent your way! Also the Rowasa takes 4 weeks to really work, your prednisone dose seems low and Entyvio takes awhile.
Posted 11/25/2018 8:52 PM (GMT -5)
Thank you everyone, I went to the GI doc Tuesday, got a sinus infection and was put on a Z pack, seemed to clear that up, but also had a c diff test done but still waiting for the results. Hopefully tomorrow I’ll hear something back. Still flaring not sure if the Rowasa has helped at all, and I go Tuesday for my next Entyvio infusion so hopefully that will kick in more.
Posted 11/25/2018 9:56 PM (GMT -5)
let us know how the follow up goes. Entyvio isn't fast acting like Remicade, so it may take some time. There's a newer drug called xeljanz that is supposed to work faster, you may consider that if you don't get results from entyvio. In reality, no one responds to everything, and the less you respond to, the less you're going to respond to it seems like...

Are you still on prednisone? If you're on pred and not having much response, it's a good possibility that the c diff may be hanging around. That's how it is for a lot of people anyway, for me, it was always just a severe flare up causing the symptoms. It's easy to think everything's gone awry due to stress, and stress certainly doesn't help, but I have gone years with low stress and ended up with symptoms as bad as they were when I was stressed. So stress reduction in itself isn't necessarily a slam dunk. I am so sorry about your son. How is he doing? In reality, one thing to remember, is that we can live without a colon - worst, worst, worst case for UC, is not the end of the world. I gave up my colon a few years back and I live a lot better than I did with UC. Positive energy and hugs to you and your family.
Posted 12/4/2018 3:18 PM (GMT -5)
The doctors office called last week and said the c diff test needed to be redone. The first test was to solid. I have not had any time to do that yet, but symptoms are slightly better. Still have blood and going a few times a day but I think it’s a little better than a couple weeks ago. My grandmother passed away last week and I made it to her funeral Saturday, it was a good service. Thank God for longevity, she was 93 and as sweet as she could be. Very busy month with our son and have the third infusion of Entyvio the day after Christmas. Not on prednisone just the Rowasa now, really don’t want to take anymore prednisone. Enjoy your week everyone!
Posted 12/5/2018 10:28 AM (GMT -5)
definitely redo the c-diff test. I hope you get sorted and on a good path. Being more aware of "flare" versus "c-diff symptoms" might be helpful.

a flare is inflammation caused by UC and the associated symptoms. c-diff is an infection that causes blood, D, and pain. Calling the c-diff symptoms a "flare" in not helpful. For example Entyevo does nothing to treat c-diff, and waiting for it to get rid of those symptoms is not a good idea.

It is difficult because some UC and c-diff symptoms, like blood and D, overlap. You may see some improvement over time from Entyevo slowly working - but much more likely if the c-diff remains and increases, then you wont even notice any benefits of Entyevo until the c-diff is treated and gone.

Vanco can be effective, but it is a nasty antibiotic. You might want to consider some type of fecal transplant, which is much more effective in treating c-diff than antibiotics. In any event, you want a couple of negative c-diff tests in a row. If you have blood and D that seems disproportionate to the severity and extent of the UC, and it does not respond to pred - than that suggests c-diff no matter what c-diff stool tests say. c-diff is an infection, and does not respond to pred.

good luck
✚ New Topic ✚ Reply