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It's my 14-year anniversary with UC

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Posted 2/8/2022 8:29 AM (GMT -8)
Thank you! So do I!
Posted 1/14/2023 2:08 PM (GMT -8)
I guess I couldn't count when I made this post last year. Just hit my 16th year anniversary with UC right around now.

Just got routine bloodwork and calprotectin done last week. All came back normal.
Posted 1/14/2023 6:27 PM (GMT -8)
Hey - it's 14 years for me, too!

(ETA - Clearly, I didn't read the entire thread nor did I look at the original date before I replied!)
Posted 1/14/2023 8:56 PM (GMT -8)
Lol, no worries. Happy 14 years! Ha
Posted 1/15/2023 7:33 AM (GMT -8)
Guess I can post here too.... It's been about 14 years since my diagnosis... but 14.5 years since symptoms started.
Posted 1/15/2023 8:31 AM (GMT -8)
Are you flaring right now like your signature says?
Posted 1/15/2023 1:11 PM (GMT -8)
Yes I am. sad
Posted 1/15/2023 7:58 PM (GMT -8)
2013 was the year for me so i’m going into 10 years. Failing inflectra and waiting on Rinvoq approval. I’m at the tailend of a 3 month flare. Still not out of the woods yet, but my good lod friend prednisone helped me again. Weird how pred makes me lose weight. When most people gain.
I wonder also if inflectra is less effective than actual Remicade 🤔
Posted 1/16/2023 6:22 AM (GMT -8)
How long does the pred take to help?
Posted 1/16/2023 10:46 AM (GMT -8)
Sorry to hear! Pred usually worked very quickly for me, within 2 or 3 days.
Posted 1/16/2023 10:49 AM (GMT -8)

D.Brasco said...
2013 was the year for me so i’m going into 10 years. Failing inflectra and waiting on Rinvoq approval. I’m at the tailend of a 3 month flare. Still not out of the woods yet, but my good lod friend prednisone helped me again. Weird how pred makes me lose weight. When most people gain.
I wonder also if inflectra is less effective than actual Remicade 🤔

I hope the Rinvoq helps! You're lucky about no weight gain with pred. I had gained nearly 40 lbs at one point! I still don't fit into my old clothes the same way I used to, but I lost most the weight.
Posted 1/16/2023 12:22 PM (GMT -8)
What! 40 lbs! I need that like a hole in the head. How long were you on the pred to gain 40 lbs? And if it works within 2-3 days, how long do you need to be on it?
Posted 1/16/2023 6:05 PM (GMT -8)
Lol. That was over the course of several years when I was stuck on some form of steroid for a very long time, so I wouldn't worry much about that. I took it once or twice a year for probably about 5 years before that with no weight gain at all.

Typically, you take a course of it for 5 to 6 weeks, starting at 40 mg for 2 weeks and then tapering. It can take longer than a few days to work sometimes...it depends on the person and the flare, etc. But it generally helps pretty quickly.
Posted 1/17/2023 6:09 AM (GMT -8)
Okay, I understand a little bit better now. Thanks for the info.
Posted 1/18/2023 8:40 AM (GMT -8)
No problem. If you aren't flaring that badly, like I saw you mention in another post, I'd recommend trying budesonide (Uceris is the brand name in the U.S.) first if you decide to try steroids. It doesn't have all the side effects. Takes a little longer to work...1-2 weeks.
Posted 1/18/2023 8:52 AM (GMT -8)
Okay I'll mention that. Is it worth suggesting rectal meds instead of steroids at all?
Posted 1/18/2023 9:25 AM (GMT -8)
Yes. I'd personally try mesalamine enemas first but it's up to you.
Posted 1/18/2023 10:29 AM (GMT -8)
I would rather try that first too, so if you advocate that then I will suggest it. And how soon could I expect to see improvement from them? I want to be prepared in case I have to "negotiate" with my GI. I know she will want to go to steroids first.
Posted 1/18/2023 11:11 AM (GMT -8)
You can request to try steroid foam enema for day and mesalamine enema for night.

q
Posted 1/18/2023 11:40 AM (GMT -8)
I would try just the mesalamine ones first. I went many years with just mesalamine, never touching steroids. If you don't see any improvement with mesalamine enemas after maybe 2-3 weeks (I can't remember exact timeframes...it is too long ago for me and my memory is crap now, lol), then you could try the steroid enemas or budesonide pills. The steroid enemas helped me the first time I used them and never again so I don't like them. I used mesalamine enemas for over a decade though as maintenance and increased to treat flares. I hope you get to feeling better soon.
Posted 1/18/2023 11:56 AM (GMT -8)
Thanks so much for your responses.
Posted 1/18/2023 3:01 PM (GMT -8)
No problem!
Posted 1/28/2023 5:50 AM (GMT -8)
I just realized that this month is my 10 year anniversary with UC. What a long road with twists & turns, ups and downs. Hopefully I will stay in remission land for the next 10!
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