Starting Entyvio

notsosicklygirl said...

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

I've always been very tired after all of my biological doses, it doesn't matter if it is an infusion or injectable. I usually sleep great afterwards. Also with an injectible I can do it on my time not by an infusion center's availability. With all of that being said Remicade was the best biological for me so far.

Got my third infusion of Entyvio yesterday. It went even better than the first two. They got the IV in on the first try, and I had no side effects at all. I did sleep a lot afterwards and haven't ventured far from my bed today, however. I'll post in a few weeks when I'm down to about 15 mg of prednisone. Should have a good idea if the Entyvio is working or not.

As I mentioned a few replies ago, I just started Entyvio.

I am curious. How have people responded to this drug? Has it been working right away? Has it taken a long time for the medicine to kick in? For me, it's been only 2 days and I have noticed nothing yet, however, I don't plan on noticing improvement for a few months.

A happy report:
Have had infusion #5. Side effect of fatigue (less than remicade though) and some skin reactions (I now get solumedrol by IV just before the Entyvio).
Otherwise tapered off prednisone a month ago.
No signs of UC flare that began in July.
Hoping for the best for all of us using Entyvio!

Just wanted to say I'll have been on Entyvio one year on May 9th. I felt better by the third infusion and now most days I forget I even have UC. Can't say I've even had any side effects except fatigue after infusion for a day. Very mild nausea the day after. Just so thankful to have my life back and hoping others on here can find relief with it as well!

Mk11- just a thought---do you take Biotin 5000mcg? This may help with the hair loss. Glad your gi symptoms are still gone though!!!

TheITIS, sounds like this is good news! While I don't know if it's clinically shown the less maintenance meds the better the logic sounds good. Interesting about the FMT, I think my GI does do it for C Diff and some Crohn's but I hadn't heard much about it for UC.

Had my infusion this week (a few days early, some scheduling issues came up) and got 250 mL extra hydration after the Entyvio to see if that helped my fatigue I experienced last time. My GI thinks I either just had a virus last time OR it was from the B12 injection I also had since she says some patients feel fatigue after that. But I used to give myself shots monthly, so I'm betting on virus. She suggested the extra fluids and I haven't had any fatigue issues, a bit of headache here and there but that could be stress related.

We are going down from 9 to 6 pills of Colazal since 1) I'm doing so well, and 2) to see if that helps my hair loss since we think that's from the mesalamine and not the Entyvio. All my bloodwork looked good, just a bit low B12 but not much so going to try oral supplements.

A little nervous, I haven't been on such a low mesalamine dose in...forever. But I fit the profile of someone who would do well on Entyvio and I am, so we can be optimistic. I'm doing a scope in May so we'll really be able to see the results then.

Hello from the infusion chair! Still doing well on 6 Colazal/day and Entyvio. Trying the 250ml extra hydration again today to confirm it's helpful in my post-infusion fatigue. Hope others are starting to feel better on this.

how long did it take you to truly notice effects? I feel like I'm improving (it's been 11 weeks since I've started) but I still see blood, urgency, high frequency etc. Better than what I've been before but still in a bad flare due to some standards.

Quick update: Had a scope/endo today! Will see the photos and get more info at my infusion appointment on Thursday, but my GI said my colon looked totally normal which is quite the change from this time last year (and not sure it's something I've heard in 10 years of this disease). Only thing was some heartburn areas in my upper GI tract which isn't surprising given the many rounds of Pred I've had.

I will finally confidently say I'm an Entyvio success, so now it's just a matter how long it can be effective and if any long-term side effects develop. My GI was involved in the trials so I will ask her what's the longest she's seen someone on this drug and what my long-term treatment plan should be. I have already tapered my Colazal to 6/day which is manageable and not sure I'd want to go lower.

That's great news, mk!! I feel like doing a happy dance for you!! Will be interested in what your doc says about how long she's had anyone on it. My doc only has a few patients on Entyvio and I am the only one who is using it as a first biologic.

My first infusion is scheduled for Friday evening. Will post updates in this thread. Hope I have as much success as you.

Happy to hear you are doing so well, mkl11.

I hope Entyvio works as well for me. I've had 2 infusions so far and I feel like I am doing a little better, with some decrease in frequency/urgency and improvement in BM consistency. BUT frequency is still far from normal, and still having lots of mucus and some blood.

I know it's still too early for me to expect results from Entyvio, so looking forward to my third infusion on August 11.

I get my 2nd infusion tonight.

The flare is nearly under control now. I am sure it's mostly because of the pred because I am still on 30 mg (drop to 25 next week). Only very faint traces of blood one or 2 times this entire week, always formed, trips are down to 3-4/day (my normal is 1-2 with an extra trip once in a while depending on if I eat a lot of fiber)

Hopefully by the time I am off the pred, Entyvio will take over and I can enjoy a good long remission!