Entyvio, Remicade, Sterala, Hunira, 6mp, 5-asa, pred,did not work -I'm on Xeljanz now

I'm on Xeljanx, 9 days in, think I have a UTI, which is a side effects, not improvement in my crohn's at all!

On the UC forum, a ladies husband had great luck with drug. I'm hoping it will kick in.

I'm hoping things turn around for me soon.

I'm on Cipro for UTI as well right now. Started today. I did home test kits they say I have one. I will go to clinic tomorrow to be double sure.

Not doing good at all since my scope two weeks ago. Much worse.

I wonder if I should start steriods, they help calm things down. My doc doesn't communicate with me, have to work through a nurse and that takes about a 3 days turnaround. I went to U of M after being Mayo two years and I have to tell, I'm not impressed with any doctors so far. They do the scope to collect money, throw a drug at me and then I can barely get a hold of them and when things don't work, they want to push me to another specialty hospital. WTH?

I hear lots of fear, stress & frustration in your post & understand. You have had a rough road. However, 9 days is just not long enough to know if this is going to work. Everyone is so different with medication, how they react & metabolize medications. And no two people are alike. I would not let how fast someone else got fast results dominate my situation. It can take a couple of months for some of us to show improvement. I just wouldn't be so quick to call it quits, we are all unique in our own way.

I am with Plucky, I would not add a steroid because then you will not know if its working or not. Just not worth the chance, give it some time. I would not set a time limit either, meaning don't tell yourself I am going to give it another week & then quit. I hope you are on a good probiotic with the Cipro, its rough on the gut. Drink lots of liquids & try some cranberry juice too.

Take care.

You should give the Xeljanz more time to see if it’s working. I also failed many drugs - remicade, humira, entyvio, pred, 6-mp, pentasa, you name it. I’ve now been on Xeljanz for 3 years and am in remission (per last scope) although I still have some symptoms. It probably took 4-6 weeks before I started to see progress from Xeljanz, and then continued improvements over many months. I’ve had no side effects and the pills are easy to take compared to infusions. I take 30mg/day (6 pills) which is higher than the typical dosage for RA so you may want to talk to your dr about dosage. Good luck!

I know this may be a long shot but it helped me so I will throw it out there. My disease was completely uncontrollable until I was finally tested for my vitamin D status several years ago. I was extremely low-under 10. I have been taking 5000 units per day of D3 and at that amount, my levels hover in the mid 30’s. My disease is much calmer and easier to control flare ups. I can’t say it is completely due to vitamin d status but my GP thinks it is.
I hope something helps you and you can avoid surgery .

Therearmiracles :

So sad to read about your kidney episode. Hope you'll find the solution that works for you soon because you suffered enough. Not fair at all. I share your frustration, but at the same time I hope that you can continue to be strong and hang in there. It's not easy, but it will resolve someway... maybe surgery could be the key, like others said.
For the steroids... Depend how much you took them in your life until now and how you react to it. With the right diet and sport (when you get better, after weeks on pred), withdrawal symptoms can be a lot smoother... I'm not a fan of Prednisone, it's evil and very bad, but it did helps me in the past. It does temporarily heal your gut, that way, the new medecine you are on have more chance to work than if your gut is all inflammed. But yes, as plucky said, you can only know the new med is working when you'll get off Pred. I'm not shure how exactly sick you are, but pred could give you a real shot at Xeljanx and delay the surgery option a little further.