Oh no

Hi everybody. I posted previously I was doing extraordinarily well on Xeljanz. Now in week number seven and do for my week eight evaluation.

I have been feeling so good I have returned to eating prepared food in restaurants and went to a great cookout on Friday. I think I’m re-flaring. We all know the symptoms. Urgency after eating, abdominal cramping. I’m oddly OK in the morning with a solid movement but it seems as the day goes on it gets worse. Usually it is the reverse!

Message into Dr. of course but curious if anyone here does a high-dose quick blast of steroids if you think you’re going into a flare. I’ve seen a few people post that like they will do 40 mg for two days 20 mg for two days. Like for a week. Any feedback is welcome and please please wish me luck I was completely human again

P

I certainly hope you’re right. Or that the Xeljanz is able to overcome it. But it’s pretty distinctive. Laying low for a while obviously. I just figured by week seven I should be able to branch out a little bit, I flew too close to the sun I believe.

Oh no, I can so identify with you TP - I'm literally following your foot steps.

I started Xeljaz 7 weeks ago, which brought my very stubborn flare under control, I was back to running, heading out the door with out toilet paper hidden in my pockets and enjoying normality. On Sunday, decided to go for chicken wings and ended up with suspected food poisoning. Violent diarreagh, high temp and awful nausea, which only has eased off today, dropped 3kg in 3 days.

Spoke to my consultant who said he hopes it will pass, but terrified this will land me back in flare up land.

Hope you are feeling better now !!

Wishing you well. I would just go back to bland diet for awhile and cross both fingers and toes! As Ipoop often reminds us, healing does not always happen linearly but in up and down waves.

TP177...how are you doing today?

q

Hi, doing better and actually,,,,,,,without the med. I couldn't pick it up for a couple of days and I was already better cutting back on the diet. I think what everyone is saying is right, non linear.....and watch the food. I've just been sooooooo good for sooooo long I wanted to EAT, haha. It's a frustrating ride, thank you for the support.

As an aside, is there anything that people really swear by for maintaining remission? Full disclaimer that we are all different, of course..... But I see a lot of people w the turmeric or curcumin which I was taking. Also interesting note: I was taking L-glutamine to help heal the gut at the suggestion of many, supposed to help rebuild tissue / healing. Doc said straight up - there is actually evidence that L-glutamine can induce a flare. (Head of GI at Univ of Chicago Research Hospital, Dr. David Rubin). He rules. Saved me.

( and I don't get notifications when people respond to my posts, only when I log on, so sorry if I ever "ignore" anyone)

Thanks for checking in, everyone stay well and pray for THE CURE

I’ve been on mesalamine for the whole 16 years usually the prednisone would pull me out of a flare but this one was a goner. So I am off the Lialda. And full-time Xeljanz, not combined w any mesalamine product.

I tolerate all of them fine and I still have all the rear end stuff in reserve but I think he was worried with the rapid return of symptoms that a steroid approach was more effective.

Thanks for asking