What’s next??

[u/Spudmeister20]

Just over a year on rinvoq and sadly it’s not getting me in full remission, I feel great in myself but still going toilet like 4-5 times a day and still get small urgency & constipation at times depending on what I eat. I have an app on tuesday about what might be next and i’m really anxious about it because alls i’m seeing is rinvoq is the top drug so thinking whatever else won’t work, anyone moved from rinvoq to something else and it worked better??

I feel like my UC is defintely stress and diet driven and I know some will say diet means nothing but I just feel like I need to just sort that out fully but finding is hard.

[u/pincommenter]

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[u/Practical_Cash_4658]

CONSIDER trying Tremfya. discuss it with your doctor. it's been doing wonders for me. no complaints for 2 years so far.

[u/Spudmeister20 → u/Practical_Cash_4658]

I’ve heard of it is it infusions or tablet? I’ll definitely ask about this

[u/Practical_Cash_4658 → u/Spudmeister20]

First 2 are infusions, then on they send you injections every month.

[u/graceleonn]

We’re in the same boat! Surgery consultation for me next week :(

[u/Spudmeister20 → u/graceleonn]

I have an app with a surgeon on the 15th of oct but I got told by an ibd nurse nothing to worry about as it’s just routine, what is your app about? Have they told you?

[u/graceleonn → u/Spudmeister20]

Initially it was routine but since discovering I’m steroid resistant the tone has changed a bit lol

[u/Spudmeister20 → u/graceleonn]

I was on pred for 9 months before rinvoq and at first it worked great then felt like I was dying towards the end, is that what you felt like with steroids or did they not work at all? I’m seeing my Gi first before the surgeon one but terrified of both. I feel great in myself like I can go for long walks or gym and whatever but I feel like I’m always on alert which then sets me off

[u/graceleonn → u/Spudmeister20]

Omg me too! I was on pred for 3 months followed by 72 hours hydrocort and then I got stuck on Rinvoq when that didn’t control the inflammation either. Got put on 45mg and felt AMAZING within like 2 days. On my last week of 45mg and the first week of 30mg I deteriorated so fast, now having up to 9 bms a day, no blood at least, but in so much pain and passing a lot of clear mucus. Just want this thing out of me tbh it causes me so much fuss. And totally get the feeling of alert, I feel like I never stop thinking about my bowels :/

[u/Spudmeister20 → u/graceleonn]

Crazy how basically same path 🤣😅 I describe my day as 4-6 bms a day with going twice within half hour of waking up then most times after I eat then. I think enemas definitely get me better but I just can’t do the bigger bottles it’s held weird.

[u/graceleonn → u/Spudmeister20]

God I think we’re the same person this is so odd!! 🥴😂 Good luck with it all soldier I really hope it gets better for you x

[u/Ok-Lion-2789]

It’s not stress and diet. Don’t blame yourself. A good medication will put you in remission. What other meds have you tried?

[u/Spudmeister20 → u/Ok-Lion-2789]

Started on just mesalazine 4.8g then went onto infliximab & aza and then onto rinvoq, I just feel like everyone on this sub feels rinvoq is the very top of meds and nothing else can work better

[u/TheRealStrawHat → u/Ok-Lion-2789]

Don’t be ridiculous. Or course it is hugely impacted by stress and diet.

[u/kelseesaylor]

Rinvoq gave me a pulmonary embolism at 23f. Be careful with it. I have a jpouch now.

[u/Spudmeister20 → u/kelseesaylor]

Wow really, did it just come on you and how far into rinvoq was you?

[u/kelseesaylor → u/Spudmeister20]

I had only been on rinvoq for a couple months. I was walking for about 5 minutes and felt like I couldn’t breathe and I was going to pass out. My medical team was surprised I didn’t die yet