Getting off Xeljanz-bad reactions

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therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3525
   Posted 11/11/2017 6:51 AM (GMT -7)   
Last night I was going to go to the ER, but they don't have anyone to do ultrasound of kidney and bladder in the middle of the night. I had a fever about 100, kidneys ached, tightness in chest and just felt so bad. I toughed it out and still I have a slight fever 99.4, I run low with body temp, so I feel like my face and neck are hot and the rest of me is chilled and cold to touch.

My pattern on xeljanz is I take it at 7am and 7pm, like clock work. about the 9th hour being on it, I'm feeling all achy, sick, chills, fever and kidney pain. My head start to pulse and before I was having a rapid pulse.

It Happens at 4 in the afternoon and 4 in the morning, like clock work. It's getting worse. I'v been on it for 15 days now. Also, I know it's dehydrating me! I'm so dang thirsty all the time. I only drink water! No coffee or tea. I'm taking in BOOST now.

I'm stopping it Xeljanz.

I don't have UTI the doctor said, there is blood, but no bacteria. But I felt better on Bactrim after the second day. It took away the pain in my uretha. Do I get back on it?


I'm so sick and I have people coming up today that I have to work for, I have a partner that can cover for me and I think I may have her do that. My fever is still 99.5 I think I will try Tylenol, but like I'm afraid of hurting my kidneys!!!

I wrote my doc on day 9 of being on this medication , explaining all these symptoms, he told the nurse, to tell me, colds are going around. I know the difference in my body between and cold and side effects. I've been on every biologic out there!

Then they wrote back a few days later and listed all the side effects of Xeljans and they matched what I was having. I'm like no sh$t dude, I know.

They want me to do a stool test. I will. I'm getting an ultrasound of kidneys and bladder, probably next week.

I said I want a doc appt ASAP (even though he is 3 hours away) I can't do a Video chat until January!! HE is book until then.
Xeljanz is killing me slowly. This is no joke, my kidneys hurt!!! Fever, chills, shortness of breathe.

Just telling you all, it was not for me!!! 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!

countess18
Regular Member


Date Joined May 2016
Total Posts : 108
   Posted 11/11/2017 7:34 AM (GMT -7)   
you have been through hell! Hugs /kisses/prayers so sorry you are going through this!
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
very mild proctitis 5cm-20cm per sig scope in December 2016
sig scope Oct ’17 now w/left side UC - 1st 50cm normal due to Rowasa new inflammation 50-70cm -
currently on Rowasa enema in Pm, prednisone taper 5mg per week, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa,

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10865
   Posted 11/11/2017 8:55 AM (GMT -7)   
Sorry to hear it didn't work for you. Definitely stop it with those side effects.

Do you have a backup plan?
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

I believe that my anus is a portal from Hades as only evil comes out of it.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29808
   Posted 11/11/2017 8:58 AM (GMT -7)   
Oh wow! Good you're going off the med.
Hugs,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 190
   Posted 11/11/2017 9:20 AM (GMT -7)   
How disappointing, but good move to get off of the Xeljanz. Those side effects were not a good sign. Sounds like your body was rejecting it. Hopefully you feel a little better once it is out of your system. I wish you could get a more attentive GI. Waiting until January to discuss next steps is unfair. Maybe you can keep pushing Mayo to move up the appointment.
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Still tapering off prednisone .5 mg every 4 weeks. Developed osteoporosis due to steroids

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15264
   Posted 11/11/2017 10:02 AM (GMT -7)   
Boo. I am sorry you've been feeling so terribly. I had severe side effects with remicade, and the only thing that stopped them was stopping the drug. Things will get better. I hope your GI will make it a priority to see you.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1858
   Posted 11/11/2017 11:31 AM (GMT -7)   
So sorry you are feeling so crummy. Sounds like the right choice for now.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1965
   Posted 11/11/2017 12:35 PM (GMT -7)   
That sounds rough! It is always best to listen to your own body. Hope you start to feel better soon.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3525
   Posted 11/12/2017 11:20 AM (GMT -7)   
I’m in ER, waiting on CT scan results and blood work. I’m not messing around , bad pain in bladder and back I will post results.
UC since '05, now in '15 Mayo Clinic say Chrons/colitis, U of M '17, ulcer in 30% of colon, of those ulcer 75% are ulcerated. No biologics work. Rethinking a game plan with doctor, whom I'm not impressed with.

Post Edited (therearemiracles) : 11/12/2017 11:25:48 AM (GMT-7)


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3525
   Posted 11/12/2017 11:46 AM (GMT -7)   
Still blood in urine. Blood test show losing lots of blood from UC . He said start cipro flagyl . No kidney stones. Need a scope of my pee hole. He said I have two things going on a flare and and blood in urine.
UC since '05, now in '15 Mayo Clinic say Chrons/colitis, U of M '17, ulcer in 30% of colon, of those ulcer 75% are ulcerated. No biologics work. Rethinking a game plan with doctor, whom I'm not impressed with.

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 190
   Posted 11/12/2017 12:20 PM (GMT -7)   
Have they concluded that there is an infection of UTI/bladder or kidney and that's why they are giving you the antibiotic? I hope a urologist can see you. Good thing you went to ER and it will be relief once you figure out what's going on with the urinary tract. Make sure they are checking liver function too given the recent terrible episode with the Xeljanz

Hang in there!
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Still tapering off prednisone .5 mg every 4 weeks. Developed osteoporosis due to steroids

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3525
   Posted 11/12/2017 3:22 PM (GMT -7)   
No uti or bladder infections, scan showed colitis and they’d said take it for that. They said I need a scope of my urethra. side effects of xeljanz says urine troubles, I’m hoping it’s that .

A 9mm polyp showed up. Why wasn’t that taken out a few weeks ago in my scope?
UC since '05, now in '15 Mayo Clinic say Chrons/colitis, U of M '17, ulcer in 30% of colon, of those ulcer 75% are ulcerated. No biologics work. Rethinking a game plan with doctor, whom I'm not impressed with.

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3543
   Posted 11/12/2017 3:27 PM (GMT -7)   
Wow - a polyp that they missed?

I hope you are on the road to feeling better soon.

Hugs -
Age 61. Diagnosed UP 1983, UC 1986
Humira started 6/5/17
Lialda, 4 pills a day
Failed 6 MP (Liver enzymes skyrocketed)
Metamucil - 2 doses/day
Various probiotics
Multivitamin, vit. D3
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17
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