Starting Entyvio

Thank you very much for the input everyone it really means a lot. Yeah I guess the million dollar question is when to waive the white flag and if I'm still too early to quit what to use as a bridge, I guess I'm a little over 4 weeks in, so yeah just two infusions. Last loading dose (at week 6) comes at the end of this month. I took another 10 mg prednisone today (like yesterday) on top of my uceris, imuran, lialda cocktail and will probably do the same again tomorrow until I meet with my GI Friday. I honestly don't even know if adding the 10mg of pred will hold me based off the crazy sounds my colon is making. I wonder if you can double up on uceris and take two 9mg tabs one day, theoretically wouldn't that be safer than taking uceris and prednisone (regardless of pred dose) as pred is more systemic? Obviously I'll run all this by my gastro Friday, I'm just trying to hold on. I just can't believe how quick things changed. So y'all think I should find a way to at least get to my 4 infusion 14 weeks in even if that means remaining on a steroid before calling it quits? Again I'll talk to my doc about these things but I am his first patient on entyvio, like myself he's still learning about this drug. I will continue keeping this log updated, thank you all for your kind words and perspective!

If you are your GIs first entyvio patient maybe get a second opinion with a more experienced doctor who deals with ibd patients.

Update:
I stopped the prednisone the other day and am sticking with the uceris, imuran, lialda cocktail. I met with my gastro and if I don't have response by week 9 he wants to pull the drug. He wants me to stick with the max dose of lialda, imuran, and uceris and stressed not to alternate days with the uceris like I have been over the course of the past few months. What's interesting enough is today I'm back to normal in terms of urgency (crazy unpredictable disease) and my first and only movement this morning looked normal. Over the past weekend I ate a lot of whole wheat bread so I'm wondering if gluten might have contributed to my flare-like symptoms? I don't know, I know the only two things that have consistently bothered my body are ibuprofen and spicy foods, maybe I can add gluten to that list particularly when I'm not in remission. But yeah the plan of action is reevaluate with my gastro at week 8-9. Today I feel normal, hoping I can drop the uceris come infusion three at the end of this month and continue feeling normal.

Thank you all for your thoughts and I will continue updating this log if anything else changes (at the latest after infusion 3).

Thank you Marianne I'll keep remicade for my next treatment and perhaps simponi or humira thereafter.

Dikid: you tell me how to locate this unicorn vedo gastro guru and I'll gladly set up an appointment. With this treatment still being relatively new and most insurance companies only allowing you to try treatment after failing remicade or humira or sometimes both beforehand the likelihood of running into a gastro that specializes in vedo and has a tremendous amount of experience with medication, well it's just highly unlikely. Even so if I find another gastro that looks credible on paper the earliest I'll be able to get in to see a second opinion won't be until I hit weeks 10+ anyways, and would he have a ton of experience prescribing vedo? I likely won't get that answer out of the receptionist when I try to make an appointment.

U B Tough: Hang in there, I think this is just an incredibly slow acting medication, the side-effects will become bearable in time, I've had none (or very few, headaches maybe) but I think the more you go in for infusion the more likely you're body won't react negatively as you become accustomed with infusion.

Mayo clinic told me give it 4 months, I'm seeing slight improvements,I'm going to continue. I have tingling in my sometimes during the day and am sensitive to light now, wearing sunglasses more. Side effects . I went back to entyvio warriors , this is a good site to talk to others about it, it's on Facebook. I really read a lot of what people are experiencing and I have to say, I'm better than most out there in this drug. I've been thrpugh the ringer, so I appreciate this break.

I had my 3rd last week. Had a migraine the next day and 1 day of weakness, but other than that nothing brutal regarding side effects of the past.

As far as my bowel....has deteriorated, now passing lots of m, still at 6ish a day. Loose stools now. However I've also missed an IVIG and cut my pentasa in half so my body could be reacting. Yesterday I ate lunch and didn't poop for 2 hours after, normally it's 5 mins! It was strange, I kept waiting to poop so I could safely go out....

My urgency is less. I've also noticed my cystic acne (on my head) as cleared and my hair has stopped falling out. i'm a bit discouraged, especially because of the m but hanging in as small improvement is better than none. Still need to take imodium if I'm going out for more than an hour.

TheITIS Thanks for taking the time to make these posts, which I just found. I have found them very helpful, as I am just about 4 weeks past my fourth infusion. I think, in a way I am getting better at times, but then again at times, I think I might go backwards. Since my major problem had been constipation, vs d, in the past, it has been really hard to tell. Doc thinks I am showing progress and pointed out entyvio takes a really long time to work.

happyday: no problem and I plan to continue documenting any issue that might arise for the sake of lending perspective with my experiences to those starting the medication. The crazy thing about my response is immediately after my third induction infusion there were a few days where honestly I felt my health continued to diminish. What's odd is that week seven (maybe a few days before) is when I noticed big difference, you'd think after getting the concentrated dose of medication is when you'd be more likely to respond but in all honesty at the start of week 6 I was iffy on some-days. I really do expect to go a step-backwards before my fourth infusion (the long time in between) but based off the sort of response I'm having with entyvio I think I'll be in remission around infusion 6 maybe 7 assuming I'll be able to adjust to the 8 week time in between maintenance doses. Only going once or twice most times formed in the mornings with some urgency not normal yet, on bad days (haven't had one since week 6) maybe three or four times less formed. No blood at all. Also worth noting I haven't touched a steroid since week 6. Hang in there and maybe push for C-reactive protein blood-work post infusion 5 to compare (assuming you got blood-work in the beginning of treatment) just to get an idea where your body is at.

therearemiracles: Thank you for the support, you're no longer on entyvio??

Well, I promised to keep this log up to date so I'm doing precisely that.

Week 13 (as I sort of anticipated) I started slipping backwards, frequency and looser movements are back. I have a few days of an old uceris prescription left that I began taking once more, I haven't touched a steroid since my 3rd infusion give or take a few days. I go in for infusion 4 today. I initially thought I'd slip backwards as my body got adjusted to the longer 8 weeks in between doses but to actually have it happen is certainly demoralizing. Hopefully this next infusion will get me back on track.

I hope the infusion knocks you back into shape!

I just had my 3rd infusion and am down to 2.5mg Prednisone and doing okay, just some bloating and gas which I think suggests some inflammation is brewing so hoping the Entyvio really starts kicking in.

My GI mentioned that if I can't hold out for 8 weeks we will go to 4 week infusions. Her office is already working on approval for me just in case, so we have it as a back up option. I was surprised to hear about the 4 weeks, but glad it's an idea that's going around the community.

DutchessCountyJim said...
I wish everyone the best with this treatment plan. But for me, the numbers are making me proceed with caution. Did someone say 47% success vs. 26% placebo. Not very good with all the possible side effects. I have fear. Especially since remicade was toxic to my liver. Everyone talks of the dangers of prednisone, but it works 100% for me! It's given me a good quality life.--- I suppose when they stop my prednisone script and I become ill again, I will have to try something else.

prednisone worked great for me too but the side effects were unbearable. The main ones I couldn't live with were the weight gain and the acne. I was also irritable, depressed, unable to sleep. I am thankful for surgery. I am very petite now and I have no acne! Life is good. prednisone is not a long-term solution.

Thought I'd chime back in, I think infusion 4 has set me back up. I took uceris on the 22 and then again this morning and will likely stop after today's dose as I felt really good after the infusion on the 22. I'm going to stick to my prediction that I'll be in remission or close to it by infusion 6. There's a chance I'll slip back again before infusion 5 as my body adapts to this long time in between infusions.

I have a question for you all that have gotten set-up on the 4 week entyvio dosing intervals. I'm not sure about y'all but getting insurance to authorize this medication to begin with has been a royal pain in the tail. Insurance initially approved the first couple induction infusions then I had to really fight with them to re-authorize. I basically had to get my GI to go to bat for me to deal with insurance to finally get re-authorized and it sounds like I'm only covered for the next few months, then will have to get my GI's office to deal with this hassle all over again. Has the 4 week maintenance dosing schedule been approved by the FDA or is considered experimental? How difficult has it been to move up the infusion scheduling? Thanks for all the support, I will continue to update.

It's helpful to hear your updates - including about insurance hassles.

My pre-auth was for only four doses, and I've had the first two loading doses.
Entyvio connect was easy setup but haven't yet engaged in billing.

More importantly: No improvement in flare symptoms yet but wasn't expecting it. Still on prednisone (since July).

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.