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Sparkly
1y ago
Sharing my journey to deep remission from severe UC
Hi everyone! I’m so excited to share that I just reached deep remission from severe UC I’ve been battling for 3 and a half years!!!
It feels so surreal to me, but I wanted to share how I got here in case it can help anyone else!!
I have been on Entyvio infusions every 4 weeks for 2 years, and have been on xeljanz 22mg daily for 1 and a half years.
Things started to change once I got into the Xeljanz. I stopped bleeding within 2-3 days of initially taking it but the urgency took a bit longer to go away.
I also had to do a lot of stress reduction and remove ALL veggies, seeds, and regular red meat consumption from my diet.
I both wanted to encourage you with this post, and ask a question.
I am now beginning to taper off of Xeljanz, and I feel like I need more sleep than usual. Is it typical to need more sleep while tapering off of medication?
Your answer
SlipSlide
1y ago
Welcome! I’m so happy for you! What an amazing feeling! Having a period of deep remission is so refreshing and restorative. I have deeply appreciated those times in my life, too. I’m curious to know what you mean by tapering off of your Xeljanz? I know some providers sometimes choose to not taper their patients in order to maintain remission, so something you might want to ask your provider more about, as every patient situation is different and every patient has different risk factors. I was on Xeljanz but never tapered, so unfortunately can’t speak to the increased need for sleep you’ve been experiencing. Welcome to Alike!
Sparkly
1y ago
thanks so much! So we are hoping to taper successfully off of Xeljanz because there are pretty significant risks of cancer from long term use of the drug. I already have a heavy family history of cancer, so we are hoping to maintain my remission only medicated by Entyvio.
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