Entyvio Time

Please keep us posted on your progress with Entyvio. I start my first infusion tomorrow. 🤞

I am also right there with you, two infusions down and another coming up for my first round of 3 and then every 8 weeks. Quality of life so much better than the antibiotics therapy I was on for so many years!

Down side: I am also picking up bugs and getting sick more easily.   Seems like we can't win on all fronts!

Edit: note that I am also on Budesonide temporarily which also can affect immune system a bit, so kind of a double whammy. I will go off that after my third Entyvio infusion and then maybe the slight cold type stuff will clear up too.

@DJ H posted:

I am also right there with you, two infusions down and another coming up for my first round of 3 and then every 8 weeks. Quality of life so much better than the antibiotics therapy I was on for so many years!

Down side: I am also picking up bugs and getting sick more easily.   Seems like we can't win on all fronts!

Edit: note that I am also on Budesonide temporarily which also can affect immune system a bit, so kind of a double whammy. I will go off that after my third Entyvio infusion and then maybe the slight cold type stuff will clear up too.

Hello DJ H,

did the budesonide help your pouch before going on entyvio?

@ytcrockpot posted:

Hello DJ H,

did the budesonide help your pouch before going on entyvio?

It helped quite a bit. My GI Dr had me do a trial of Budesonide to see how I reacted and if that went well, then we were going to try Enytvio. The Budesonide trail went really well so then I started Entyvio after working out the insurance and such.

Will be interested in your progress.  Exactly the plan my doctor has for me. Am on Budesonide for a couple weeks now with Entyvio infusions to come.  Have had pouch for over 25 years and had first pouchoscopy last month when I began treatment with a new gastro doc.  As I read more, I realize I should have had sought care sooner. I guess I just had to live with the pain I developed in 2018. Live and learn and am grateful for a new look from a new doctor.

Just had my 3rd loading dose of Entyvio and been weening off budesonide. Down to 1-3mg capsule a day. Started feeling good after 2nd loading infusion . Hope it continues. 🙏

Now on my maintenance entyvio, every 8 weeks. For the first week after my infusion, I have to avoid crowds and if I even see a sick person I'll get a cold.. But after the week in a mask, I seem to be doing well. No pouchitis/UC to speak of, although frequency is unchanged. No cramping/gas/pain. I have developed a deep lung cough/weeze, that I assume is a side effect of the infusions. When I started entyvio, I did get sick twice, but I've been good for the past 2 months now, so I am very pleased. I certainly dislike the cough that I have developed, but it's better then the ups and downs of pouchitis.

I have been on Entivyo monthly for two years was previously on antibiotics for quite some time. Last month changed to injections every two weeks. I do it myself in the top of my leg so much better quick easy. My gastro doctor feels I would get a better coverage through the month .My inflammation levels were very high at the start toward the 500 mark now down to below 100 so happy with my progress.

I have been On entivyo for 3 yrs. (Every 2 months) I don’t know my inflammation levels, but the blood test did show the antibodies for entivyo were showing.Previously, I was on the antibiotic rotation and ended up with c—diff. I’m happy with the entivyo and have not been offered the injections. Just wondered if insurance coverage is as good for injections vs infusions (Medicare). Has anyone had experience with their insurance coverage not being as good??