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Posted 11/8/2015 11:31 PM (GMT 0)
Sorry to hear, UB. Let us know how your appointment with your GI goes tomorrow. I didn't try Entyvio...instead, I opted for surgery after failing Humira and Remi (both while taking 6MP)...and although it's been a tough process, I have to say that it's been a huge relief for me. Best wishes.
Posted 11/8/2015 11:42 PM (GMT 0)
Thanks Atwood. I have still have options...but I'm pretty tired. May try the 5th infusion in Dec and start a new course of treatment in Jan. Or double my IVIG and see how I do.
Posted 11/9/2015 12:24 AM (GMT 0)

U B Tough said...
Thanks for the update.

I'm unsure if I'm going to continue. I had my 4th infusion 10 days ago and still can't stop pooping. Accidents or near accidents especially in the am...even in my own home. I see my GI tomorrow to discuss.

Have you noticed any positives a few days after the infusion? Firming up, less mucous, etc? Do you have a base CRP blood test prior to beginning entyvio that you could compare with new bloodwork to see if there's any progress? Maybe a quick uceris burst could help jump-start things. My perception with this drug is that if you have a severe case of colitis you're going to need to be attacking it from every angle in the beginning (imuran, quick uceris/pred, entyvio), then gradually let off the steroid. Feels like this drug might be a good maintenance drug and if you let it takeover after you've quelled some symptoms you might have a better shot of getting into remission, however I do have to reemphasize that around infusion 3 I definitely noticed a response from this drug. Also it might be worth while to ask your gastro for vsl ds script to hit this thing from every angle. Or perhaps moving up the infusions to every 4 weeks? Keep us posted!

https://www.med.upenn.edu/gastro/documents/VSL3Tursi.pdf
Posted 11/9/2015 1:56 PM (GMT 0)
I meet a gal at the infusion center who was very very sick and it took 5 infusions before she saw results and has been flare free now for a year. Good luck, starting tomorrow and nervous.
Posted 11/9/2015 3:54 PM (GMT 0)
I'm in the same situation as you U B Tough, after 5 sessions I'm seeing very little improvements...yes I am going less times a day, no bleeding etc...which may sound great for some but I was going 8-12 times a day/ including 1-3 times at night...so I wish the progress was better...was hoping this would work before the next step (surgery). On a waiting list, just did my pre-surgery medical so I'm getting very close.
Looking for a better way of life, real bad urgency and now been working from home for a full year as a result.

It is known to take time to work, then again some people are seeing the effects early on...stay positive and perhaps things will change for the two us and others in the same situation...

-----------------------------------------

- UC - since 2008
- Started on the usual (6mp, Asa, pred)
- Remicade - stable for 3 years
- Humira - didn't work after a good 6 months
- Simponi - failed as well after 6 months
- Entyvio - currently with 5 session completed
Posted 11/9/2015 4:52 PM (GMT 0)
I think I posted in this thread a while back too. I didn't have any miracles from entyvio either. It was a bummer. I am happy some of you are doing so well :)
Posted 11/9/2015 4:58 PM (GMT 0)
Infusion #3 is this week for me. I'm tapering prednisone while doing loading doses.
No side effects that are troubling so far. Per advice above, staying hydrated (with electrolytes).
Is it helping? Too soon to tell, in contrast to remicade which worked quickly.
Some days are good, while others have backsliding which seems related to food - cramping in lower abdomen & some loose stool.
As a result, I'm keeping my food intake very plain and simple - including liquid protein- to quiet my colon - trying to give this the greatest chance for success.
All your posts are helpful, so please keep updating.
Trying to remain optimistic for all of us who are giving Entyvio a try!
Posted 11/9/2015 6:09 PM (GMT 0)
Being in Canada we were late to the game with Entyvio, but i have been following the posts for some time and it did allow me to better understand what to expect, or not :( I see posts from people like you notsosicklygirl that have done the surgery and its great to hear if that option is my next step (likely soon) it is an overall positive one.
----------------------------------------
UC -2008 Pan and now taking Entyvio (5 sessions) due to all else failing (remecade/humira/simponi)
Posted 11/9/2015 6:19 PM (GMT 0)
A lot of people say it's better to start entyvio when you're in remission or close to it. I guess it works better to maintain than to heal. I started when my symptoms where almost nonexistent and I had no improvement so I have to imagine I am a nonresponder. I was also a nonresponder to remicade. they are very different drugs so it makes me wonder if my UC is actually different from the majority. By majority, I mean responders...

I am thankful I had surgery. I haven't taken any drugs in so long. I hope this is what i can look forward to for the longterm future.
Posted 11/9/2015 6:55 PM (GMT 0)
I had my 3rd infusion 3 weeks ago and have been completely off Prednisone for 2 weeks (after being on an aggressive regimen of rectal steroids since April, and prednisone since August). I am down to 1 BM a day, generally fully formed (depending my kale intake tongue) and no blood, very little bloating/gas. The only time my stomach acts up is when I have my period, which is par for the course for me.

So, objectively, it seems to be working very well for me though I hesitate to attribute it to the Entyvio--however I think that's just because most of the word on these sites is that it isn't helping many people so I have a hard time believing I'm one of the lucky few.

We'll see what happens over the next 5 weeks!
Posted 11/9/2015 7:38 PM (GMT 0)
Happy that we found this forum. Our 18-yr old son starts entyvio in the very near future for his pancolitis. In fact, going to doc's office today to discuss. We are blowing through options--lialda, azathioprine, and remicade were ineffective. Methatrexate only proved useful in helping him to exhibit side effects--fever, shortness of breath, olafactory hallucinations--pretty scary stuff. Prednisone no longer effective--he is presently on 60mg/daily to get him to his first infusion. Weight loss and feeling poorly have had a dramatic affect on his mood and usually optimistic outlook. Difficult for us to see him suffer like this. If entyvio fails, we will be getting another opinion before considering surgery. Just started the scd diet last week after his latest colonoscopy. Also bone broth, collagen, and aloe water. Some improvement in bm frequency but near constant stomach pains and fatigue.
Posted 11/9/2015 7:45 PM (GMT 0)
Thanks everyone for the support. I'm glad it's working for some.

ITIS- I can't take any steroids at all. As far as VSL it's unaffordable for me as are most supplements. After the 2nd infusion I did notice a bit less urgency especially first thing in the morning. That benefit is long gone. I probably will have the 5th infusion in Dec just to round out the year and go from there. Likely will try Stelara next.

DoubleM- At least there's some improvement for you. I do understand we all want to be better NOW!
I have my first chat with the surgeon tomorrow. I'm very scared and anxious even to walk in there. My situation is a bit more complicated in that they now suspect crohn's. Plus I have PG and up until now no one can tell me if surgery will also stop that disease or cause it to flare. I have medicinal options, just tired. Flaring for 2 years straight, not working etc has taken it's toll. I just need a break to regroup. The good news is that I'm down to 6-7 a day from 20-40 from last year...but still it's not enough to get me out of the house without a panic attack! I'm even dreading the car ride to my GI now!
Posted 11/9/2015 8:11 PM (GMT 0)
I considered trying stelara. I am thankful I just nipped the issue and had surgery. I am not getting any younger and surgery isn't going to get any easier. I felt like it was looming in my future. I've never gotten more than 1.5 year remission from any drug I've tried and the majority were completely ineffective. This is the first time in 8 years I am off all meds. No longer at the pharmacy every couple weeks, no more steroids... no more wondering what's next or will it work. I am thankful to be out of the cycle. UC sucks.
Posted 11/9/2015 8:14 PM (GMT 0)
I'm doing so much better off entyvio! I am taking two asacol hd a day that is it for uc meds. I take rafaximin for my gut which has helped super duper great!!! I'm the best I have been in years!!
I've cleaned up my diet greatly, by doing the 21 day fix. It helping me eat all whole food. If entyvio is working for you , that is great no biological has helped me, therefore I think I have a bacterial, yeast problem and not a full on auto immune thing, if this makes since. I have taken MANY MANY antibiotics but rafaximi. Is gut specific and has helped me out in a way no other med has.
Posted 11/9/2015 8:32 PM (GMT 0)

therearemiracles said...
I'm doing so much better off entyvio! I am taking two asacol hd a day that is it for uc meds. I take rafaximin for my gut which has helped super duper great!!! I'm the best I have been in years!!
I've cleaned up my diet greatly, by doing the 21 day fix. It helping me eat all whole food. If entyvio is working for you , that is great no biological has helped me, therefore I think I have a bacterial, yeast problem and not a full on auto immune thing, if this makes since. I have taken MANY MANY antibiotics but rafaximi. Is gut specific and has helped me out in a way no other med has.

That's awesome. So you're like normal? Going once or twice a day without any symptoms or accidents?

I tried rifaximin and it didn't do much for me.

I am happy you're feeling better. It's been a long time since you got a break from UC.
Posted 11/10/2015 12:25 AM (GMT 0)
Hi nssg ,
No not normal :( no like thick poops, but I hardly have any blood at all! I have energy!! I'm in work out classes, I m doing stuff at night and leaving the house with confidence. I sat through a movie and I wasn't at the end seat of the aisle :) I go in the morning back and forth for about a hour. Bu I'm happy, no terrible gas and pain like before. Trust me, it's not remission .i still have urgency. I'm not crying all the time and staying indoors! I'm going to try grape seed extract this week and see if that helps me even more. We are so different in this dis-ease (our bodies are not at ease)
Biologics just are not for me. Antibiotics are smilewinkgrin
Posted 11/10/2015 3:12 PM (GMT 0)

mkl11 said...
I had my 3rd infusion 3 weeks ago and have been completely off Prednisone for 2 weeks (after being on an aggressive regimen of rectal steroids since April, and prednisone since August). I am down to 1 BM a day, generally fully formed (depending my kale intake tongue) and no blood, very little bloating/gas. The only time my stomach acts up is when I have my period, which is par for the course for me.

So, objectively, it seems to be working very well for me though I hesitate to attribute it to the Entyvio--however I think that's just because most of the word on these sites is that it isn't helping many people so I have a hard time believing I'm one of the lucky few.

We'll see what happens over the next 5 weeks!

I think we've had a similar experience. I was on the steroid until right around infusion 3. I have no doubt that something started happening (nothing drastic) around the third dose. If your body reacts anything like mine to the long time in between final induction dose and first maintenance dose please do not be discouraged if you backslide around week 13. I did. Did a few days back on uceris then after infusion 4 (week 14) I stopped again.

I will be getting blood drawn to check on CRP, I guess I'm about 16 weeks into treatment give or take. I'll probably do the blood test right before thanksgiving and will see my GI after the holiday. Hope everyone hangs in there, sending positive vibes!
Posted 11/16/2015 6:12 PM (GMT 0)
Past week has been bad. Really bad. No blood but incredible urgency is back. I've been off uceris since infusion 3 (exception of one or two days around infusion 4) and am about a month out from infusion 5. So I guess that means almost 13 weeks steroid free give or take. What do I do? I'll follow up with my GI who I imagine is going to want to pull the plug on entyvtio which stinks because I felt like I was heading in the right direction, it really is unbelievable how this disease can change so erratically. Do I consider going back on the steroid for a few weeks as a bridge until infusion 5 or maybe do a one day on one day off until infusion 5? Do I cut my losses and move on to one of the TNFs and if so which? Terrible timing as I planned on getting my knee worked on over the holiday break mid December but I can't and won't until I stabilize. I have been eating spicy foods over the past week which I know isn't helping so I've recently cut that back out. I just really don't know. Sorry about the bad news.
Posted 11/16/2015 8:16 PM (GMT 0)
So sorry to hear this ITIS:( It may be the food that has triggered things. Perhaps try rectal meds/increasing probiotics if you aren't already taking them.

As far as Entyvio, one of my GI's (I have 2!) told me to commit longer then the actual 14 weeks I was initially told. He said it is taking his other patients 6 months to notice any difference. That brings me to January, which is how long I've given it. You could ask to increase the dose of Entyvio to see if that makes a difference. My GI said the pharma company won't do that (at least in Canada) because there is a shortage of the drug.

Now that surgery has been discounted my treatment plan is to continue with Ent until Jan., follow with antibiotics if I test positive for MAP, or get on Stelara.
Posted 11/19/2015 8:07 PM (GMT 0)
Just an update:

Halfway between my 3rd and 4th infusion. GI stuff is doing well, fingers crossed.

However, I came down with some viral thing on Sunday and have been wrecked ever since. It evolved into some sort of upper respiratory thing that isn't letting up (and I'm supposed to get on a plane to Italy Saturday! cry ) My boyfriend got the same thing around the same time, but is already better (he's on Remicade).

My GI says on Entyvio it's common to have more frequent and prolonged upper respiratory infections. My GP gave me a z-pack even though we can't confirm it's bacterial right now but since I'm getting on a plane so soon it might be better to overprescribe in this case. I'm usually so cautious with antibiotics but I do think I'll take it--my GI gave me the go ahead as long as I keep my probiotics up.

I'm hoping this is my only one this year, but if these do become common I'm not sure how I'd balance that with the benefits of Entyvio.
Posted 11/21/2015 2:51 AM (GMT 0)
Thanks for the suggestion U B Tough and thanks for the update mk11.

I thought I'd share an update myself, so I haven't gotten back onto the uceris yet as I followed up with my GI today. He said as of last weeks labs my inflammation markers and other lab test results are remarkable. I'm befuddled, maybe I'm still doing okay and the spicy food thing was a no no at least for a while longer? He wants to do a surveillance colonoscopy soon and wants me to continue staying away from the steroid. I guess I'll continue sticking it out and chalk up the past week to poor food choices. I assume after the colonoscopy we'll really get an idea as to how this drug is working.
Posted 12/14/2015 4:40 PM (GMT 0)
Thought I'd update. Infusion 5 completed. Colonoscopy scheduled for Wednesday. Other than that blip several weeks back I'm feeling great.

Between infusion 3 & 4 I felt like the medication was losing effect early right around week 13 (7 weeks in between 3 & 4). Between 4 & 5 I was concerned I'd start having issue 7 weeks after 4, that hadn't been the case and it feels like the medication lasted the full 8 week duration.

So now I'm roughly 22 weeks in, definitely feeling better than when I first started. I'd guess at 75-85%, only use the bathroom once a day unless I consume caffeine or eat something that I shouldn't. I guess the colonoscopy will really tell all. I'm worried about how my body is going to react to that prep, hopefully I'm well enough now to bounce back post-procedure. I know that stuff can sometimes push people one way or another if they aren't quite stabilized. Hope everyone is hanging in there!
Posted 12/14/2015 5:11 PM (GMT 0)
Thanks for update. Been tracking your progress.

Will be interested to hear what your colonoscopy shows. Hoping for the best!
Posted 12/15/2015 12:16 AM (GMT 0)
Just had my 5th infusion today. Went well, and wasn't as fatigued as usual, but I did nap a bit this afternoon. Still planning on taking my infusion days off from work (bless my employer for having unlimited sick days).

My last update mentioned my upper respiratory infection--I did 2 days of a z-pack but immediately developed GREEN liquid poo so stopped and fortunately my infection cleared up. I was very loose since then and have only finally started firming up again. But no UC symptoms! Just staying diligent with hand washing to avoid more UR issues.

That said, my diet has fell victim to the holidays so having some gas pains and a touch of bloating, but that's due to refined sugar (i usually only have honey or maple syrup). Can't resist the peppermint bark! Just need to look out for SIBO.

I've also tapered off all my rectal meds, which is making me a bit nervous but also is a huge relief. I've finally gotten all the steroids out of my system so no more moonface at all. Just 9 Colazal/day and probiotics. Lab results tomorrow to see if I need to add back in folic acid, vitamin D, and B12.

Honestly doesn't feel real that I'm doing this well on it, I was so convinced it wouldn't work. For context, I did respond to Remicade and Humira, just not in the long term. So time will tell...
Posted 12/17/2015 2:31 PM (GMT 0)
Oh, and just got my bloodwork back. Pre-Entyvio my CRP was 13, now less than .5! And my WBC was 14, now down to standard-for-me 7. The proof is in the pudding, I guess...fingers crossed for a smooth 8 weeks.
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