Wanted to pop in for an update as I get my infusion! Going on 7 years with infusions every 8 weeks in complete remission. While they are now offering quick 30 min infusions I’m sticking with my usual...
It's been so long since I posted an update! I am happy to report that still going very strong on Entyvio for 6 (!) years. In fact I've been tapering off my Colazal with no issues and it's such a...
Hello from the UC forums! I was recently diagnosed with slight hypothyroidism (TSH around 6.5 -- though I do not show evidence of an autoimmune cause of it). Because I want to try to get pregnant...
Great news, FlowersGal! I don't have the actual numbers yet, but my GI informed me I have no antibody levels and my Entyvio levels are definitely in the therapeutic range. So great news all around...
I've so neglected this thread! However, that's a good thing overall as have had little to report on my end, until now :) I've continued with 325mg of tylenol before my infusion and a 250ml bag of...
Hi all! A quick update: Still in complete remission! However I’ve talked a lot about my fatigue after infusions here. Even though it only lasts a couple days or so, I’ve become worried at times my...
Search “Starting Entyvio” on this forum—that thread chronicles my last few years on the med and any issues I’ve had, as well as other people success! Off to post a (good!) update now :)...
Just checking in! Still in remission, though have been having indigestion flares (mostly nausea) though I attribute that to my very loose diet I allow myself being in remission. Will be reigning in...
Been a few infusions since an update! Still 100% in remission (knock on every piece of wood in sight). My office has sped up the saline part of infusions a touch (to what I think is more standard,...
I saw some comments floating around about people considering Entyvio so wanted to bump up this thread with what's become somewhat of a boring update: still in remission. In fact, I'm currently living...
It is slow going—I was told 14 weeks to determine if it’s working (and Entyvio site says this too) so at least try to the first non-loading dose. Mine likely took that long but was masked by the slow...
I am glad we are sharing success stories! They can be hard to find online. I've been keeping a journal of sorts on the "Starting Entyvio" thread for the past 2.5 years and wanted to share here, too....
Been two infusions since I posted an update! Just realized this September will mark three years on the drug. Still in clinical remission as of my scope in mid-February. And we are still facing a...
Thank you HQQuinn! Looks like they shut down their medical products, unfortunately, per their site....
I'll be in Japan for about 6 weeks. Yep, essentially no coverage while abroad except for emergencies, the definition of which seems very restrictive. Also, I'm participating in a program for part of...
That's great! Unfortunately I can only potentially be reimbursed for an emergency but am wary of their definition of an "emergency" as they deem it "life-threatening" (so how does a broken bone...
Hello! Has anyone in the US who has traveled abroad for long periods found a good travel insurance policy? A few either rule out coverage completely due to pre-existing conditions, or require some...
Yes that's true, but the particularly dire shortage situation is actually due to Hurricane Maria--should have mentioned that originally!...
Just wondering if anyone has been affected by the saline shortage (due in part to Hurricane Maria), or if anyone knows of any plans in place as the shortage continues? I was unable to get my usual...
I have been neglecting this thread! Still going strong on Entyvio (knock on every piece of wood in sight). My last infusion was a bit rough only because of the saline bag shortage--I could not get my...
Sigh. So now I've switched back to the orange pills I've been having very loose stools and running to bathroom multiple times a day! No clue what has caused it, but it does align with trying new...
Just an update! Interesting that you didn't have issues with Apotex, MNBeachgal. That's what I was switched to and I HATE it. It's a white pill but turns orange and gets all powdery and stains...
SUCH great news! 2 years in remission for me on Entyvio :)...
Thank you, all! This is helpful. I did get in touch with my GI to get her experience and she said yes, the switch in generics can cause issues occasionally so we'll just have to wait and see, as...
Update: my CVS said it's a permanent change for all pharmacies in my area and that I should have been informed on the bottle and at checkout. They at least apologized for not, and confirmed I have...
Hi all, I see there are some threads on the topic of brand vs. generic Balsalazide, but I am wondering if anyone has experience switching between generic versions? I have been taking an orange pill...
Glad to hear others are having success! Had my infusion last week, all went well. I have a scope in a few weeks so that'll be fun to see (hopefully!) clear results. No other updates other than doing...
Just an update. Another infusion today, fatigued today but still no IBD symptoms overall. That said I do have a bit of gas pain here and there (lower left quadrant and right next to belly button),...
Hi Bananas08, Ugh, so sorry to hear that! Step therapy (denying you coverage because you haven't failed other drugs) is so, so dangerous to patients. NY state (where I live) recently passed a bill to...
Yes, it helps with my fatigue. I started using it early on, so perhaps I would be fine without it now my body is used to the medication, but the extra hydration certainly won't hurt. My GI rec'd it...
Ha, CCinPA! That's so funny you say that about looking at BMs. I was just thinking about that the other day. I definitely never will be able to go back to not looking :)...
Wanted to resurrect this older thread and see if there any other perspectives out there, or stories from newer members, particularly with my situation... I'm visiting from the UC forum. i've had...
Thank you! And you are right about not worrying about this stuff :) Not really a problem, but also not used to having all this free time to not think about my health! That's a good point about a...
I'll lead with my questions and then share why I'm asking. There's lots of info on this online but I'm not quite understanding it in plain terms... What is the relationship of folic acid and B12?...
Just checking in--last week I had my infusion. Everything is great, no side effects. Just make sure I get the extra bag of 250ml hydration and take it easy that day. Bloodwork looks good. Folate...
Hi all, My bi-monthly update: infusion yesterday went well, just usual fatigue the day of. No bloodwork since this I did a full panel last infusion. The folic acid does seem to be helping with my...
Glad to see others having success! Had another infusion on Monday (going on 1.5 years so I have lost count of infusion #) and got a full panel of bloodwork done. Everything normal, just a...
Thank you for the reply!! Ah interesting, yeah I've had a mild case of that. Unfortunately/fortunately this is confirmed ringworm through a scraping. My GI replied this morning saying I am ok to take...
Hey Red_34, I was trying to search through the archives to see where your ringworm saga ended up 3 years ago, but couldn't find it so started a new thread. How did your ringworm saga end? I have been...
Ha you read my mind, was coming here to ask just that. I've always been good about getting it but not the past couple years. I am pro-vaccine but for some reason just been not wanting to deal with...
Update time! My previous post detailed a little blip I had--I do think it was just that, a blip brought up on something I ate plus the hormones of a bad period. I bounced back while traveling to...
First of all, thank you Barnsbury for sharing! I had asked my GI (who also participated in trials) the longest she'd seen someone on it successfully and she said 5 years, so that's interesting to...
Thank you for the kind words! Currently in the middle of my infusion, which marks a year of the drug. I just saw the images and they were basically picture perfect. My GI said the tech asked her in...
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...
Search "Starting Entyvio" for a long thread that chronicles a few of our experiences. I have done very well on it, with very limited side effects. Fewer than Humira, and while the IV is somewhat of a...
Just chiming in: now that I am in remission I get bloodwork done at every other infusion, so every 16 weeks. My GI is pretty aggressive with monitoring but does not see the need for bloodwork with...
Search "Starting Entyvio" to find a more extensive thread on this. It includes updates from a handful of us that are on or have tried it. I seem to be the only one who has responded very well. I've...
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...
I started Entyvio while on Prednisone so I'm not quite sure when it kicked in but I tapered the prednisone early on the process and was in remission fairly quickly (faster than the 14 week timeline...
Oh that's a good point--I had been taking only a few VSL a week (plus daily Florastor) but have not this week. Perhaps a cause! Thank you :)...