Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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Entyvio

firefly719
firefly719

Hi everyone,


I've been on here before and posted questions previously and have always been happy with the response I have gotten. I am hoping that it is still this way!


I was diagnosed with Ulcerative Colitis in 2003 as a 15 year old. I was really lucky in that Asacol controlled my symptoms for a long long time. A few years ago this stopped being the case. I was switched to Imuran and had developed pancreatitis two weeks later, so that treatment plan was stopped. For the past two years and a half years I have been on Remicade and it was quite successful for me, until recently. I've suddenly stopped responding as well to the Remicade and it's only keeping me partially healthy. So my doctor is switching me to a newer drug called Entyvio. Like most, I have done a lot of research and am waiting to be contacted to start.


I guess my question is if there are any others on here that are taking Entyvio? And what their experiences have been like while on it. It is another IV drug, so I am already used to that. I have read that there is not much study yet into the safety for unborn children and babies while breast feeding. I am newly married and will be wanting to start a family in the nearer future so I am naturally curious if there are any pregnant women on here that have experience with Entyvio. I understand that as a newer drug there can't have been any long term study yet. My doctor tells me that like Remicade, it is safe during pregnancy. But when I do my research there doesn't seem to be a lot to support that statement.


Any help from anyone would be appreciated! 


Rachel

JeanCarlin
JeanCarlin
Sorry that I can' help , I have never taken Entyvio but just wanted to wosh you the best of luck with it, I hope it helps. I take Lialda and the Humira shots and still not in remission so know how hard it is finding the right drug. I actually go tomorrow to see a new specialist in hopes they have a better idea for me. My thoughts and prayers are with you!!
firefly719
firefly719
Thank you for your reply! It seems that this group is pretty quiet. Which is understandable.. I really only come back when I am in need and forget about it most other times.
I hope that you find something that works for you! I was really lucky to be healthy for a long time before having issues. So I am really hopeful that this new drug will be helpful for me.
My thoughts and prayers are with you as well.
JeanCarlin
JeanCarlin
You'e right, this group has been quiet since they changed it all around but I do try to stop in occasionally. I'm nervous about today's appt and hoping they can find something to help me.
I pray that the Entyvio works for you ... hugs..
firefly719
firefly719
How was your appointment?
JeanCarlin
JeanCarlin
Ah, thanks for asking. Nothing new, they may want more tests but keeping all my meds the same for now...this was a second opinion and the doctor wants to discuss my case with her collegues before making any channges.
Have you started the Entivio ? If so I hope it helps, xox
firefly719
firefly719
I hope that they figure out what works best for you so you can start feeling better soon. It's hard going day to day not feeling well and being unsure of what treatment plan is going to work right for you. And then it's scary because you have no idea how long it will work once it is working!!
I haven't started the Entyvio yet. I am waiting to find out how much of the treatment the province will pay through the special drug plan, and then how much my insurance company will have to pay. It shouldn't be too lengthy of a process, I am just waiting to figure out when it will all be happening as I am due for a treatment soon, so it's really only going to get worse from here if I don't get something.
Thanks again!
JeanCarlin
JeanCarlin
I hope they can gigure out the finances and get you started on the meds and I pray that they help.
The uncertainty of this disease sucks, I hate alwasy having to know where the bathroom is when ever I go somewhere and it makes long drives very difficult. Wishing for a miracle for us both!!!
Hugs,,,
PeterL
PeterL
Just a quick first post to see if there has been any 'progress' with Entyvio? I have been fairly recently diagnosed as a rather mature 77 year old who falls into the bracket of having more than one autoimmune disease. Standard treatments weren't working and a biological treatment seems to fit the bill, currently going through a series of blood tests and X-Rays to make sure I'm a suitable candidate. I'm very hopeful and probably very lucky, no questions regard payment for treatment, I'm with the NHS here in the UK.

Take care

PeterL
rmb
rmb
Hey Peter. This group is pretty quite but just wanted to wish you good luck with getting things under control and finding the right meds.
firefly719
firefly719
Hi Peter!
I'm glad this website has emailed me that someone commented or I never would have seen this.

I hope you're feeling okay. I have now been on Entyvio for over 2 years and have been in remission since about a month after taking it!
PeterL
PeterL
Thank you both for responding, I'll join the group now and see how things go - very encouraging. Early days for me as we're still waiting on the results of those initial tests which can take upwards of a fortnight. I wonder why the group is so quiet, there are certainly plenty of people with IBD? As seems to be fairly common, I have more than the one autoimmune disease, also having MG which is much more rare and yet has a very active group on here.

Thanks for getting back

Peter
rmb
rmb
There was a revamp of this website a couple of years ago and I think that prompted a lot of folks to leave and maybe find other support groups.

I’ve been in remission for quite a while, knock on wood, but still pop in this group occasionally to see how things are going with folks.
JeanCarlin
JeanCarlin
Not sure if this will help but I have been on Entivio now for almost a year now and have had some good results so far
This group has been so quiet thta I someitme forget to check in, :-(
PeterL
PeterL
Jean / all - couple of questions.

Do you carry out the infusions yourself and if so have you had any issues?

Now that there is a promising vaccination in the offering for Covid does the fact that you are being treated with Entyvio have any influence as to whether or not it is OK have such a vaccination?
firefly719
firefly719
Hi Peter,

I personally here in Canada go to an infusion clinic to have my infusion done by a nurse. Also regarding immunizations, I have had no problem with any immunization while on Entyvio, live or dead vaccine. When I was on remicade there was a rule that you couldn't have it two weeks before or two weeks after an infusion because it is an immunosuppressant. But I believe that because Entyvio is gut specific there is not the same problem.

Hope this helps!
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