Entyvio infusions? and other questions :)

[hey ya'll]

Hello all!

I am so grateful for this group! I discovered you a few months ago and almost 3 years into my MC journey. You are all so helpful and inspiring and I don't feel so alone trying to figure this out.

I have suffered with MC for three years and have failed on Budesonide, Viberzi, Colestid, and Immodium. I'm no longer taking any meds for MC which makes me feel good that at least I'm not putting meds in my body that aren't helping.

I have been on 20mg Lexapro for 15 years but I'm happy to say that I have slowly and somewhere painfully weaned down to 5mg/day. If my plan is successful I will be fully off of it in 3 more weeks. What can I expect after that? Seems too good to be true that I will see immediate improvement?

I am also on Day 4 of the Stage 1 eating and it is very difficult, especially while shopping for and feeding my family a variety of foods. I have seen no improvement yet, which I think is typical, and D may even be a little worse. I'm eating boiled chicken breast, salmon, uncured turkey bacon, sweet potato, jasmine rice, canned green beans, olive oil, salt, and black coffee.

My Vitamin D had been super low but I've got it up to around 50 by taking 5,000 iu per day. I have also been using magnesium oil spray and in the past couple of days have tried taking Magnesium Glycinate - how do I know if D is caused by that or just my regular MC?

So, my main two questons are:

1) does it make sense for me to be doing the Stage 1 eating plan before fully getting off Lexapro??

2) has anyone tried Entyvio infusions? My GI is recommending this which I have not been inclined to do as I feel like I need to fully get off the Lexapro and I'm pretty medication hesitant anyway. Thoughts on this? She claims that my MC is autoimmune and that Entyvio will change my life by treating the autoimmune disease. I think she is waiting for me to try all the other things and give up and go for the infusion. I would love to know thoughts on this.

May God bless you all with health and healing!

[tex]

1) does it make sense for me to be doing the Stage 1 eating plan before fully getting off Lexapro??

These are uncharted waters, so this is only my opinion, but most likely, no treatment is going to overcome the problems caused by an SSRI, especially if you've already tried budesonide, and it wasn't able to handle it. So to answer your question about the diet, avoiding gluten, and never adding it back into your diet, will give you a head start, because usually, it takes a number of weeks, and sometimes months, to get it all out of your system and stop your immune system from reacting against it. The other foods that need to be eliminated for that diet can be cut out after you've managed to completely wean off the SSRI. This is because gluten (anti-giadin) antibodies have a 120-day half-life, wheress most other foods have only a five or six-day half-life.

2) has anyone tried Entyvio infusions? My GI is recommending this which I have not been inclined to do as I feel like I need to fully get off the Lexapro and I'm pretty medication hesitant anyway. Thoughts on this? She claims that my MC is autoimmune and that Entyvio will change my life by treating the autoimmune disease. I think she is waiting for me to try all the other things and give up and go for the infusion. I would love to know thoughts on this.

I suggest that you read the newsletter published a few months ago by the Microscopic Colitis Foundation, regarding the use of Biologics to treat MC. For your convenience, here's a direct link where you can download a copy:

https://www.microscopiccolitisfoundatio ... fcb80f.pdf

I hope this helps.

Tex

[hey ya'll]

Tex,

Thank you so much! The article is so helpful and confirms all my suspicions about Entyvio. I think I'll pass on it.

Thank you also for your thoughts on the diet changes before fully ending Lexapro. The crazy thing is that I've been strictly gluten-free since 2012, back when I had a lovely normal digestive system! I went gluten-free in solidarity with my husband and son who had some gluten-intolerance issues. I would have hoped that would help me not get MC, but alas is did not. I think I will resume a more normal GF diet for now.

Thank you for sharing your thoughts and for this entire site and forum! It is invaluable!

[suzieq]

Hey y'all,

I've been on Entyvio infusions just about a year now, I had the 1st infusion April 2022. The only side effect I've experienced is some fatigue for a day or so after the infusion. Here's my experience with it. It took 6 weeks, 2 infusions, for the Entyvio to kick in. I was in "remission" until December 2022 when I had a 3 week flare, had another 2 week flare in February and just started a new flare a few days ago, hopefully it will be short lived. The first 2 flares I thought was caused by some stressful situations that went on, but this current flare is totally unexpected. So the jury is out on the Entyvio. I still maintain egg free, casein free, gluten free, soy free diet BUT I know that I'm not watching my diet as closely as I should be. I just wanted on come on to tell you my experience. I hope that you are feeling better.

Suzieq