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

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therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3520
   Posted 11/5/2017 4:33 PM (GMT -7)   
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?
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 344
   Posted 11/6/2017 2:59 AM (GMT -7)   
TAM,
First of all, you gotta take some deep breaths and try to calm down--9 days isn't enough time to say if the xeljanz works.
Second, I would avoid steroids if at all possible (like unless you are bleeding out in the ER, don't take them). Because then you'll never know if the xeljanz works or if it's the steroids, until you try weaning, and weaning is a special brand of torture.
Third, it's time for you to prepare yourself for surgery--even if you don't end up needing it, you'll feel so much better if you are prepared. Get some counseling, go to an ostomy support group, watch educational youtube videos made by ostomy patients (I like "the stolen colon"), etc.
I feel 100x better since my surgery, save for having to wean off the prednisone. If you are sick and tired of being sick and tired, then surgery can fix that *instantly*. Just sayin'. XO
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15152
   Posted 11/6/2017 5:32 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/6/2017 6:18 AM (GMT -7)   
I third not taking a steroid. Unlike other meds, they really do just mask symptoms and nothing else - they don't heal anything or poorly if they do.

I obviously hope that the xeljanz kicks in and starts working, but I also agree with thinking about your surgical options in case it doesn't. You can speak to a colorectal surgeon; you don't have to have surgery if you don't want it but it helps to know what is possible and what isn't. You may perhaps still be eligible for a j-pouch if you've never had any small bowel disease and don't have fistulas.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 232
   Posted 11/11/2017 8:39 PM (GMT -7)   
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!

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3520
   Posted 11/12/2017 4:58 AM (GMT -7)   
Dave no way can I take it any longer! My kidneys are bleeding, I have blood in my urine and no bacteria, it's not UTI, now i have to have ultrasound on bladder and kidneys. I had rapid heart beat. Kidney pain. Fever. Tightness in my chest. Bleeding never slowed up. This was every single day! I was going to go to the ER the other night, but they don't do xrays in the middle of the night! Can you believe that! I'm doing a stool culture Monday.

I felt like I was dying. Stopped it yesterday. skull
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1680
   Posted 11/13/2017 2:26 PM (GMT -7)   
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 .

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 866
   Posted 11/15/2017 4:36 AM (GMT -7)   
TAM—holy smokes! It sounds like you are in a bad way & should be in ER. Could this possibly be a reaction to Xel? What was your wash out time from Stelara?

I’m with the others...9 days isn’t near enough time.

Please take care & I'd highly suggest an ER visit.

Keep in touch.

I’m doing well on Stelara. No remission but pretty darn good. Still dealing with fistulas though.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

climbsnowgirl
Regular Member


Date Joined Nov 2016
Total Posts : 75
   Posted 11/16/2017 9:40 AM (GMT -7)   
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.
28 yrs old, Mtl (Canada)
Dx UC 2005 but DX Crohn March 2017. Flare frome 2005 to 2009. Remission from 2010 to 2015.
Prev. med : Imuran, Pentasa, Mezavent, Enemas, Salofalk, Remicade, Vanco
Since september 2015 : 2 salmonella, 2 c-diff and 2 hospitalization for those.
Current medication : Stelara started 2017-04-07, Renew Life 80B, S. Boulardii
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