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Stelara Psoriasis Side Effects (PHOTOS & STORY)

Please listen to my story. It’s a bit long. Desperate for answers. My 18 year old daughter was on Remicade for Crohn’s from age 13 until recently. She stayed in remission except for about 3 flare ups where her levels needed adjusted then back in remission. She did have a couple of Pancreatitis episodes as well during this time (not sure if Crohn’s related). On July 14th they switched her to Stelara because she started making antibodies to Remicade and she was already doing it every 4 weeks and she was having a few break through symptoms. They didn’t want to try Humara because it was too close to the same meds as Remicade (called it a cousin). They think Remicade may have also caused Small Fiber Polyneuropathy as well.

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Stelara Psoriasis Side Effects
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Anyhow…about a week after her Stelara induction she started having a Psoriasis outbreak (she had had this on Remicade occasionally too). Then her mouth became very inflammed. She has raw spots, bleeding, bumps (no canker sores), white on tongue, pain and burning etc. They thought it was thrush and started her on yeast meds and mouthwash. She had a MRI done at the ER to make sure there was no inflammation etc in her abdomen. Her sed rate was the highest it had ever been at 66. CRP was up as well. A week went by with no improvement. Low grade fevers at night. They started a 25mg wean pack of steroid’s in case it was Crohn’s related. Within about 3 days she got better. Never completely but probably 80 percent. Fast forward it’s time for her 8 week Stelara shot. Again a week later she gets this mouth infection again! Looks the same although not quite as bad as last time although it hurts worse than last time. She started 40mg steroids 4 days ago. They have her on 40 for 5 days and then slowly weaning down. There has been no improvement.

Stelara Psoriasis Side Effects
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Her GI said if there is no improvement by next week they will consider admitting her into the hospital and starting a transplant medication to “bridge” her to give the Stelara time to work. It’s called Tacorculmis and it can dangerous. It’s a very strong immunosuppressant. They have to admit her because too high of levels can affect heart, kidneys, etc. They have to keep testing her blood over at least 3 days maybe longer to find the right levels. Then she said she would not release her until she is more stable.

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Stelara Psoriasis Side Effects 8
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She has been on a all formula diet since starting the Stelara to help bridge and so far her intestines etc are fine. This sounds very drastic to me to take a chance with a dangerous medication, hospital admission during a pandemic, not even knowing for sure if Crohn’s is causing this. Her Crohn’s has never manifested this way. She has had the occasional canker sore but nothing like this. She usually would have the bloody painful BM’s in the past and indigestion.
I feel this is odd happening shortly after each Stelara dose. Like she is allergic to it? Side effects? Maybe it was yeast and it took a while to work last time and that’s why the steroids aren’t working now?. These steroids are a higher dose taken all at once instead of throughout the day like last ones (which can make yeast worse) and she is not on yeast meds anymore?.

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Stelara Psoriasis Side Effects
Stelara Psoriasis Side Effects

It is very scary to think of her going to a hospital in Florida where we live in a high risk COVID city on three immunosuppressants (Steroids, Stelara, and what would be Tacorculmis). She did have Moderna vaccine series. The second vaccine was March 23. She has had her antibodies checked twice since and the first time they were only 119 and the second time a week ago they were only 30. I am a type 2 diabetic and mine (done at same time) were over 1600. So it is likely she is not protected from COVID.




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