Modern Vaccine = First flare in six years.

It's been YEARS since I've been on this forum. I went through the full gamut of medicines and almost got j-pouch surgery. But, at the last second I went gluten-free in late 2014, and for the first time since diagnosis I achieved a lasting remission. (I was not in a sustained remission from 2003 to 2014, even with remicade.)

Anyways, this Moderna vaccine seems to be the ticket back to problems for me. Diet alone isn't fixing this anymore... I started to see blood after the first one, but felt like I was possibly overcoming it a few weeks out from that. But, after the second dose it was like my body gave up hope of not flaring. It's rough.

Just wanted to post it here in case anyone hasn't gotten the covid vaccines yet and are considering if they should or not. I don't know what the answer is when weighing that decision. I'm headed in to get scoped in June and we'll figure out what we have to do.

Hoping a boost of prednisone can do the trick. Remicade caused a severe pain in me that took nine years to mostly subside... so a bit fearful of the biologics!

Welcome back Thoreau but sorry to hear you're flaring. I hope the Prednisone does the trick!

hey T man, sorry to welcome you back, but nice to see you -

that sucks, but i'm sure it's not gonna be a long term issue - a little more time and you'll be back at it -

my J&J/Janssen jab kicked my butt for a few days, but no UC aggravation involved -

i'm still hanging on to flare-free living, doing the same thing i've been doing for 10 years > sitting and knitting 24/7 - life is good !

TT

Iamcurious: That would be good. I would be hard-pressed to ever take Moderna again. And I was a huge proponent of getting vaccinated. But I'm a month out, on prednisone, and still suffering.

Moderna and Pfizer vaccines are using RNA technology, not DNA, and it's not as experimental as people think. My understanding is that the same technology has been used for several years to target Cancer treatments -- they just adapted it to fight COVID.

Moderna #2 gave me quite a reaction of chills and low fever and general malaise for several days, but no flare. Good news is that reaction provoked quite a antibody response -- I was tested and scored really high!

Color me relieved.

The numbers I've seen (from another study ongoing) aren't anywhere near 20% flaring. In fact, they're no higher than what you would expect to see for people who did NOT take a vaccine.

You have to remember that people with UC or Crohn's flare a lot with no apparent reason.

Just because a person flares AFTER taking a vaccine does not mean they flared BECAUSE of a vaccine.

For my teammate Joe D. --- No vaccine = Dead in 5 weeks (covid pneumonia).

beave said...
The numbers I've seen (from another study ongoing) aren't anywhere near 20% flaring. In fact, they're no higher than what you would expect to see for people who did NOT take a vaccine.

You have to remember that people with UC or Crohn's flare a lot with no apparent reason.

Just because a person flares AFTER taking a vaccine does not mean they flared BECAUSE of a vaccine.

That's really dismissive. The people in the group obviously flared from getting the vaccine. Some were in remission for years and then flared. You're going to say that's for no apparent reason? lol

I don't understand this bias. I'm not pro or anti vax which is why I can look at what people say objectively. But some people who are pro-vax will just make up reasons out of thin air for why people get unwell following a vaccine.

Can you cite the study you're following? I'd love to read it.

CCinPA said...
We were talking about other meds for UC at my last appt a couple months ago and he didn't know that Stelara was approved for UC. Between the vaccine issue and not being up to date on treatments for UC I felt traumatized.

What?! That was approved nearly 2 years ago! Definitely get a new doctor.

Thanks everybody for the replies. I've been struggling lately didn't see the notice that there were more replies to the post.

I got scoped about ten days ago. I have active UC in several spots in my colon. (My colon's M.O. was never to do it all in one area this isn't terribly surprising.) So far I'm not at the severe level, but every day it's blood and 10-15 trips to the bathroom.

I told the doctor to put me on regular (not extended release) Pentasa, but the pharmacy gave me the extended release. I'm also on Uceris. I've tried both of these drugs before (9-10 years ago) and they did not work. Only regular prednisone and regular pentasa worked (somewhat). During all past flares I was eating bread because I thought it was soft on my GI tract. I was unknowingly aggravating the flare badly with the gluten. So, I had THOUGHT this flareup should be easy to get out of. But so far no dice.

I was also on Tramadol for 9 years and just got off of it. It was due to an awful pain that I'm pretty certain Remicade had triggered. I think the Tramadol helped my gut (something to do with the serotonin portion of it). I was also on the max dose of lomotil until five weeks ago, but this doctor who was assisting with stopping tramadol really seemed to disregard all of my other symptoms and needs with the sole goal of being off of the tramadol.

Anyways, that's long-winded but essentially I'm not coming out of remission so far and think it's going to take a different game plan to get that going.

I REALLY had this disease under control without drugs aside from the tramadol and lomotil, just by going gluten-free. I could sneak a donut or other gluten for a few days and I'd start seeing blood... then I'd stop and it would go away. There was always control over it on my end. That's why I feel this is vaccine related... something about my immune system changed and it's not in my control anymore.

Thoreau said...

Sara14 said...
It made me flare, too! I wasn't in as stable or long a remission as you, but I was fine as long as I stayed on Uceris for the past year. Then 10 days after the second Moderna dose, started flaring. Really sorry this ruined your awesome remission. I'm looking into surgery now.

Sara - Sorry for my very slow reply, but how are you doing now?

I was going to ask if you tried Entyvio yet, but I saw on a signature of yours on another post that you did and it didn't work :-/. My GI doctor seems fond of it, saying it's gut-specific so there should be less side-effects associated with it.

I'm personally very averse to biologics until I'm unable to leave home due to severity of the flare... then I am okay with them (risk vs reward). My only one I've done so far is Remicade. It kinda helped, but also gave me a chronic pain issue that's taken about a decade to subside.

I honestly don't know what else is out there medicine wise it's been so long since I've been in a flare. I saw you posted about another one coming out recently (originally for MS I think someone said).

I'm curious if those that flare from the Moderna vaccine are going to have a more challenging time getting back to remission, due to some unknown (to me) way it operates in our body.

Hi Thoreau. Sorry you're still flaring. And sorry all that doctor cared about was getting you off Tramadol (which is really pretty safe and harmless, IMO). Yeah, Entyvio did nothing for me, unfortunately. No side effects but I also couldn't get off steroids the entire 5 months I tried it. Maybe it would work for you though.

I had to go on prednisone (was doing fine on Uceris before my vaccine). I improved but then my (now former) GI wanted to scope me, not sure why because by that time I was feeling mostly fine due to pred and it only showed one area of mild to moderate inflammation from 20-30 cm. Mine has been skipping areas the last 2 scopes too. He told me to get off pred if I could so I did an insanely fast taper (4 days on 20 mg, 2 days on 10 mg, then off). After the scope, I got super bad again (has happened twice now after scopes with him). I had to go back on 40 mg pred and now I'm improving again. I don't know what is going to happen after I get down on the pred, and I have no idea if I should get surgery next or what. I was going to try Xeljanz but just found out my cholesterol is really high so my new GI told me I shouldn't take it. Yeah, there is the brand new MS one too but the side effects sound extremely scary and it is so new.

If I were you, I'd be scared of biologics too after your experience with Remicade! As far as safety profiles go, Entyvio is the best. I think Stelara is second best. Good luck! I hope you can get things back under control soon.

Thoreau, re: Entyvio -- I've been on it over 4 years now and in remission. No side effects or issues. I haven't been sicker than usual and actually much less than before I think. Hard to tell during the last year and a half of mask wearing and isolation though. A big plus is the short infusion time -- just 30 minutes. It is pricey tho, but I think all the newer drugs are. But you do need to have a good insurance plan! I believe they have a copay card program but not sure how much it covers.

I had a pain in the middle of my stomach after the second Moderna vaccine for about a week. Never in my entire life have I ever had a problem with my stomach. What worked for me was taking wormwood capsules. I also drank wormwood tea. I'm from the Crohn's forum.