HELP! We’ve been in lockdown for almost 2 yrs now & now I feel like I’ve just been told to do this again for another year.

2018 diagnosed w/ UC - I was put on Mesalamine (enema) & it worked for about 4 months or so. Next, I was put on Mercaptopurine (6MP) for 9 months along with prednisone bridge until it hopefully worked - after 9 months of nothing but yo-yo of steroid highs & lows (never being able to go lower than 10 on steroids) I finally said uncle & went to Entyvio.

9/29/20 - WOW…..the light went out, everything stopped & my life was 100% back to normalcy! GO Entyvio. After my 1st infusion I was able to taper off steroids over the next month!

November 2020 - got flu shot! Still fine
March/April 2021 - COVID vaccine set of moderna - still fine!

June 2021- went on vacation. Early in the trip I did a HUGE NO NO (I know now!). I had some major headaches due to travel/jet lag & took Excedrin migraine. Again, I know this now! About 2 week into trio I started the beginnings of a flare. Dr put me on 40 steroids tapering by 5 every 2 weeks. I got down to 10 & started to have a little discomfort in the colon but not too much.

9/1/21-blood test to confirm I wasn’t creating antibodies to Entyvio - NOPE!

9/15/21- I was rushed to ER due to extremely low platelet counts (in the 20’s). Hematologist puts me on 40 steroids taper down by 5 ea week. Yeah, I was able to raise my platelets to 120 in about 1.5 months! They’ve ruled out IPT. Plus the discomfort was gone in colon. I got down to 5 steroids & a flare is starting again, so…..20 (am & pm) of steroids & Mesalamine (am/pm) - right now it’s keeping it @ bay. However, dr now has me on 6MP to see if I can lower my white cell count & still stay on Entyvio. Unfortunately this will take approx 6 months to see if it will work, all the while doing the steroid yo-yo. With the COVID pandemic still going on I cannot get a flu vaccine or the booster due to the steroids. Is this really the time to go so slow or should I be pushing for something else? I have a really good GI, but I feel so guilty looking for a 2nd opinion.

I’m 47 & have a pretty non stress life now (I was a wedding planner….enough stress for 10 lifetimes!). I don’t eat dairy, more of a Mediterranean diet & alcohol is 1x per week for ‘date night’.

Any tips, recommendations?