I'm back :(

Hello! I was diagnosed sometime around 2012 and went through some terrible times in the beginning, basically spent a solid 1-2 years chained to my home, except the days I spent in the hospital. Went through all the standard meds/steroids, Those first few years were a really dark time in my life, NOTHING helped....until I started entyvio around 2014 and things started looking up. Sometime along the way I was in full remission and things were great for years...in the back corners of my mind I almost started doubting I ever even had UC, kind of amazing the tricks your mind tries to play on you sometimes. Of course, I never stopped taking Entyvio.....I was doing it once a month, every single month, till today.

I had a terrible terrible infection in January this year and was forced to take antibiotics...about a month after I finished them I started getting some familiar symptoms - I don't know for sure if the antibiotics caused them to come back, but I don't know that they didn't either. Even though my UC never really completely went away - I still went to the bathroom more often then a normal person should despite the clean scopes - the urgency was always controllable. VERY rarely did I feel like I need the bathroom NOW, and even when I did...I could hold it. I could fart pretty confidently....I lived a pretty normal life.

Those familiar symptoms started getting progressively worse, I can't fart anymore unless I lay on my side now, otherwise mucus comes out. BMs are getting smaller and less satisfying and usually mucusy, more effort is required for less output, very similar to how it all started. I scheduled a scope with my dr and turns out the inflammation is back, severe inflammation all the way up to the descending colon.

We're stopping Entyvio, starting steroids to try to keep things under control short term - and after some blood work results, the plan is to start Rinvoq.

My heart is broken... My kids are a little bit older then before, I have more of them, we spend a lot of time together doing things outside, I have a more satisfying job now but with more responsibility. I really don't want to go back to those darker days.

I'm trying to keep my hopes up but I'm kind of freaking out, I know that trying any med is just rolling the dice....first it has to work (and only Entyvio did for me after many others did nothing), then the side effects have to be not worse than the disease, then it has to last more than a few weeks/months.

Sorry youre back!

I think that even in remission the fear is always at the back of our minds that a flare is hiding around the corner.

Please keep us updated on your progress with rinvoq. We’re all watching to see how this newer med works. I was at my GIs the other day and the walls are pretty thin so I could hear him next door telling the patient he was going to start him on rinvoq. It must be the new “IT” drug.

Sorry to hear about the relapse. I know personally how frustrating that is. I will say that you should not be too discouraged because there are so many options for you to move to. And perhaps you could get into an even better state to remission with different drugs. I will say that I have some incredible success on Rinvoq and it is incredibly fast to work. I wish you the best of luck.

Hello UCHater. I think I remember you from many years ago posting here. I'm back too, unfortunately.
As much as I hate flaring, it is beautiful to see the community rally and support each other here. It is truly heart-warming.
Your flareups start very similarly to mine. Esp with the mucous and not being able to pass gas.

I hope the new med brings you many many years of remission. Hopefully forever!

Hang in there UCHater. I'm also really grateful for this forum. I know everyone's experience is different, but we understand in ways friends and family cannot. I know EXACTLY what you mean about the fart, "can't fart anymore unless I lay on my side now, otherwise mucus comes out."

I was in remission on Entyvio for about 1.5 - 2 years then it stopped working for me and I had to switch to Xeljanz. Felt better within in days. Found my post with my 1 week Xeljanz update. Was able to fart on Day 7!

I hope Rinvoq does right by you!

One Week update on Xeljanz:

Things are going well so far. Certainly not normal (it's only been a week), but I'm definitely seeing improvements.
First of all, no observable side effects so far.

Improvements
1. No blood since day 3 or 4.
2. Pooped on day 6. Urgently, but pooped! Diarrhea improving.
3. Day 7 I farted. i.e. passed air and ONLY air.

Ha yea it really is an under appreciated skill.

I feel like air farts are such a major milestone, I feel pretty good about myself when I can do it…while I was in remission I would happily fart and my wife would get annoyed, but I’d keep telling her you have no idea how happy I am with that accomplishment lol.

So finally talked to the doctor. Looks like we’re definitely starting rinvoq and just waiting for insurance approval. He said I need to get the shingles vaccine, which kind of freaks me out going by what Bacon Girl is currently experiencing. He did mention there is no evidence that the vaccine causes flare ups and he basically insists I get it, hopefully I don’t regret it…

Yea I’m just going to wait….I’ll see how I do over the next few weeks first then get the vaccine assuming rinvoq is showing promising results.

I’m sure (hopefully) I won’t get shingles immediately after starting rinvoq 😁

He said we do a higher dose of 45mg for the first 3 months, then we lower to 15mg and adjust as needed from there.

I've been on xeljanz for 4 years and not had a shingrix vaccine. There is an increased risk of shingles on xeljanz and rinvoq but you'd be pretty unlucky to catch it in the first few weeks.

UCHater said...
So finally talked to the doctor. Looks like we’re definitely starting rinvoq and just waiting for insurance approval. He said I need to get the shingles vaccine, which kind of freaks me out going by what Bacon Girl is currently experiencing. He did mention there is no evidence that the vaccine causes flare ups and he basically insists I get it, hopefully I don’t regret it…

I agree with your doctor. I had zero side effects from the shingles vaccine and have never heard of what Bacon Girl described happening to anyone else, ever. I don't think it's a big deal if you want to wait a month or so though. My doctor didn't make me get the vaccine and I'm on Xeljanz.

I hope Rinvoq works for you!! Just proceed with caution with shingrix. My doctors think it was too much stimulation for my immune system during a flare so maybe wait until you are in remission. I would 100000% rather have shingles than deal with the vax side effects. Hindsight is 20/20. I need to report it to the vaccine side effects group so they are aware. Definitely makes me super terrified of getting any vaccines again. I would just go with your gut on this one and weigh the pros and cons.

It's the same in europe, conquer UC. i tried to get shingrix for a while but it wasn't available (and noone had heard of it) so I just gave up. The best I could get was a blood test of my chicken pox antibodies, which were sky high as I had chickenpox in my 20s, and then the hospital told me my risk of getting shingles was low because of that. Maybe I'll ask again in a couple of years.

Regarding vaccines and flaring, I think when your UC is not well-controlled then any kind of perturbation to the immune system can trigger a flare up (or make an existing flare worse), whether that is a vaccine or a virus or something else. When you're in a deep remission you have more of a buffer against these kind of disturbances and are less likely to flare up.

As a very broad generalisation i have the impression that in the US the doctors are faster both to medicate and to do surgery (talking about all medical conditions here, not UC) than in Europe, which has both advantages and disadvantages. Another example is "pre meds" before administering biologics. I'd never heard of that until I visited this forum - i always just got my infusions straight away.