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Experience with Xeljanz

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Posted 3/25/2021 10:41 AM (GMT -6)
Hi team,

8 month flare, failed Humira, failed Stelara, starting Xeljanz next week under the care of the head of GI at the University of Chicago, feeling hopeful.

I've searched previous posts, many are quite old. Just wanted to hear any feedback on Xeljanz. Supposed to kick in very quickly (within 2-4 weeks at least)? Anyone had cardiac issues which are made rather clear in a lot of the literature (doc advised was actually quite a limited study with patients over 50 with at least one pre-disposing heart condition anyway).

Had 2nd Stelara almost 4 weeks ago with no improvement, hence the next drug. And totally tapered of prednisone, soooooooo sloooooowwwllly!!! smile

Thanks in advance for any feedback, good or bad and stay well, (will update profile now)
P
Posted 3/25/2021 1:32 PM (GMT -6)
Well Im 80 years of age and like many others have gone through the biologics over the past few years.
For myself Xeljanz has ben the best thing since sliced bread.
I started on it 2 years ago to the day and for me I got results after a couple of days and has been working fine ever since.
Bear in mind that we are all different so it might take just a little longer for results remembering we are all a little different.
Best wishes that it works well for you.
Posted 3/25/2021 2:00 PM (GMT -6)
Hi i previously tried azathioprine & allopurinol, remicade and entyvio, they all helped a bit but none of them put me in remission. I've been on xeljanz for just over 2 years and it's the first time I've had a proper remission (clinical, endoscopic and histological) since I was diagnosed 6 years ago.
Because I stopped the aza/allopurinol combination immediately on starting xeljanz I believe I had a sort of rebound flare which made it hard to tell if xeljanz was working as I had a strange mix of symptoms- by the 4th day i stopped having bowel movements in the evening (i used to have several, mostly mucus and often with accidents), but i still had a lot of pain, calprotectin over 1000 (we were testing it weekly), and an increase in urgency and number of BMs in the morning. By the 5th week i started having less pain and by the 7th week my calprotectin had nosedived from 1600 to 400...so that's when I knew it was working.
I hope it works for you. I was sure i was someone who doesn't respond to anything, but xeljanz is different.
Posted 3/25/2021 2:17 PM (GMT -6)
My GI Dr is talking Biologics. Have had many rounds of Prednisone over my 57 years with this disease but last flare the dosage was so high I really struggled with the side effects. In a flare now but doing better. He suggested either Xeljanz or Stelara possibly. Be 74 with Hypertension concerned about these and all Biologics. Limey-Glad you are doing well with Xeljanz.
Posted 3/25/2021 6:25 PM (GMT -6)
Husband is now on Xeljanz 5 years. Still in full remission. It was a game changer. He could tell it was working in 2 weeks. Takes 20 mg a day. Tried to taper down when the news came out about increased risk for blood clots but started to have symptoms so went back to 20 and been there ever since. Not too worried about that risk. No obvious side effects. Took about a year after started Xeljanz to finally wean off steroids altogether.
Posted 3/27/2021 8:35 AM (GMT -6)

suzy-q said...
Husband is now on Xeljanz 5 years. Still in full remission. It was a game changer. He could tell it was working in 2 weeks. Takes 20 mg a day. Tried to taper down when the news came out about increased risk for blood clots but started to have symptoms so went back to 20 and been there ever since. Not too worried about that risk. No obvious side effects. Took about a year after started Xeljanz to finally wean off steroids altogether.

Sounds like your husband is doing well but can I offer an alternative as to dosage, I also tried to go down in dosage but was not held as well so I tried a different approach instead of using 10mg morning and night I take 10mg in a morning and 5 mg at night. This was done with GI's advice and is working great for me.
Posted 3/27/2021 10:53 AM (GMT -6)
After 6 years on Humira (adalimumab) and on-off flaring, with my gastro urging me to have surgery, I might be switching to Xejanz (tofacitinib) next week. If I switch I'll let you know how I get on.

Really I think my gastro would rather I just face reality and take the path of elective surgery but I can't get my head round accepting that.
Posted 3/27/2021 4:56 PM (GMT -6)
It's always good to prepare mentally for surgery but if you've only tried one biologic, you've still got several options before you're at that stage
Posted 3/27/2021 8:23 PM (GMT -6)
I am in the midst of failing my second and I will keep on trucking. Lots of new alternatives out there. Every year something new and novel. A whole new group of meds from the world of MS coming to the world of IBD.
Posted 3/28/2021 10:28 PM (GMT -6)

UCyousee said...
After 6 years on Humira (adalimumab) and on-off flaring, with my gastro urging me to have surgery, I might be switching to Xejanz (tofacitinib) next week. If I switch I'll let you know how I get on.

Really I think my gastro would rather I just face reality and take the path of elective surgery but I can't get my head round accepting that.

GI always try toput the way of the surgery if you have mid-severe UC.
They try to minimze their risk to happen any problem and complication.

We have to try to manage our illnes and doctor as well.
you can to try everything, diet, vitamins, supplement, trial medicines and if nothing help this is the end point and go to surgery.

But everybody has to make his own decision when and why and how will be the next step?
Posted 4/30/2021 9:35 AM (GMT -6)
TP177, how are you getting on? My gastro team have just got approval to switch me to Xeljanz and I'm excited to try it since the Humira has failed (currently on Humira, oral and rectal steroids, oral and rectal mesalazine).

I have to wait for the admin to be done, and for the meds to be delivered but hopefully in the next week or two I'll be on it :-D

I'm hoping and praying for a few years of remission at least but still working on accepting that the chances of me facing surgery one day are still high.
Posted 5/3/2021 11:01 AM (GMT -6)
UCyousee, I am doing GREAT! I literally had improvement in FOUR DAYS after flaring for months. I was amazed. I guess I'm just about into week 5 and really no issues. It did give me a whopping headache each dose for about 2 weeks but that has stopped. I am due for bloodwork and fecal cal. to check inflammation, so we will see how the liver / kidney / cholesterol looks. So far so good - I do still have to watch what I eat and drinks so I'm def not fully out of the woods but it is still early. I just traveled for the first time this weekend, flew, out to eat, etc and did great!

As a side note, my doc said to just drop everything else I was taking: probiotic, curcumin/turmeric, milk thistle, etc, etc. He seems to be a very strict "medical" guy he's like "don't waste your money". Still have to take vitamin D as am clinically deficient on that.

Good luck and post your experience!

p
Posted 5/4/2021 9:13 AM (GMT -6)
I didn't get worse when I switched from Entyvio to Xeljance, but I didn't get particularly better. I tried going down on the dose, and immediately had to go back up to max dose. I flared badly after about 4 months on it, so we moved on. When I quit it to start Stelara, I did notice a quick difference, even though it was only helping a small amount.
Posted 5/13/2021 4:40 PM (GMT -6)
The process of the hospital applying for funding to the drug being delivered took about 6 weeks but finally the Xeljanz has arrived!

I'm a bit apprehensive about taking a new drug, but fingers crossed!
Posted 5/13/2021 6:48 PM (GMT -6)
I hope it works for you. It's the only med I have left. None of the other biologics have worked for me.
Posted 5/14/2021 2:20 AM (GMT -6)
Good luck! It's the first and only drug to put me in a full remission. Hopefully you'll notice something in a few days.
Posted 5/14/2021 10:38 AM (GMT -6)

poopydoop said...
Good luck! It's the first and only drug to put me in a full remission. Hopefully you'll notice something in a few days.

Thanks Poopydoop! I'll write a message on how I've got on once I know whether it's working or not.
Posted 5/16/2021 1:39 PM (GMT -6)
I'm on day 3 1/2 of Xeljanz (I took the first dose on Thursday evening UK time, and it's Sunday evening now), and so far I've had the following response:

1) Friday night I slept from midnight to 11am with no bm.
2) Although I got up in the night on Sat it was gas that passed out not a bm.
3) Today I went from 11am to 8:30pm with no bowel movement. 9.5 wonderful hours!
4) Some of my bms have moved up 1.5 to 2 levels on the Bristol stool chart. The one at 11am was trying very hard to become a sausage.
5) So far I've had no headaches. I was a bit apprehensive about getting a massive headache while at work on Friday, but so far I've been OK.
6) I've been very tired, but I'm hoping that's because my body wants to rest in order to heal.

It looks like I started to respond by day 2 / 3. I have my fingers crossed that this is not a false dawn!
Posted 5/24/2021 1:13 PM (GMT -6)
I had my first flareup mid January - mid April, but I knew I had Colitis from my colonoscopy three years ago. I couldn't even go to the doctor because I couldn't be far from the bathroom. It was Hell. I lost 30 pounds and became anemic. Three years ago I had been given Budesonide for a possible mild flare and it helped. When I had this recent major flare, they gave me steroids, but it didn't help. They gave me Budesonide, but it did not work. Because I am allergic to aspirin and sulfate, I had to start taking Xeljanz. I took the last week of Budesonide along with starting the Xeljanz. In about four days I had my first almost normal poop. I am on a strict diet now. My hair is falling out in large clumps, but I don't know if it's from the Xeljanz or the stress of losing 30 pounds in a little over 60 days. Good luck with the Xeljanz!
Posted 5/24/2021 1:26 PM (GMT -6)
@SherrieBlossom, it's common for hair loss when someone has a flare like what you are having. Your body is depleted of nutrients. It sounds like you are having some success already which is good news!

Welcome to the forum.
Posted 6/11/2021 3:11 PM (GMT -6)
After 4 years, Humira no longer works for me.
4 to 7 loose and or watery every day for months. No blood though.

Starting Xeljanz this weekend.

Doctor has prescribed me taking 5 mg in morning and 5 mg at night.
That’s the maintenance dose correct.
I’m wondering why he’s not starting me at 10 mg in the morning and 10 mg at night as most seem to do.

Any ideas?
Posted 6/11/2021 3:32 PM (GMT -6)
Rusty Barr, could it be because your cholesterol levels are on the high side, or because you have a higher risk of blood clot?

I was started on 10mg morning and night. I'm 4 weeks in but after an almost instant response, and getting down to 2 bms a day I'm now back up to 8 loose bms a day. Not sure if it's from the gastroenteritis I had a few weeks ago or because the Xeljanz is already failing :-/

Also I've developed tinnitus but not sure yet if it's linked to the Xeljanz.

I'll have to speak to my gastro team and see what they think.
Posted 6/11/2021 9:30 PM (GMT -6)

TP177 said...
Hi team,

8 month flare, failed Humira, failed Stelara, starting Xeljanz next week under the care of the head of GI at the University of Chicago, feeling hopeful.

I've searched previous posts, many are quite old. Just wanted to hear any feedback on Xeljanz. Supposed to kick in very quickly (within 2-4 weeks at least)? Anyone had cardiac issues which are made rather clear in a lot of the literature (doc advised was actually quite a limited study with patients over 50 with at least one pre-disposing heart condition anyway).

Had 2nd Stelara almost 4 weeks ago with no improvement, hence the next drug. And totally tapered of prednisone, soooooooo sloooooowwwllly!!! smile

Thanks in advance for any feedback, good or bad and stay well, (will update profile now)
P

How are you doing now? That's awesome you're seeing Dr. Rubin. I just did a telehealth visit with another IBD specialist there. We were going to start me on Xeljanz and then I found out my cholesterol is sky high. So now he recommending the brand new Zeposia but I'm scared.

Did they test your baseline cholesterol first or no? My local GI did that so I wondered if UChicago did that as well?
Posted 6/11/2021 9:32 PM (GMT -6)

SherrieBlossom said...
I had my first flareup mid January - mid April, but I knew I had Colitis from my colonoscopy three years ago. I couldn't even go to the doctor because I couldn't be far from the bathroom. It was Hell. I lost 30 pounds and became anemic. Three years ago I had been given Budesonide for a possible mild flare and it helped. When I had this recent major flare, they gave me steroids, but it didn't help. They gave me Budesonide, but it did not work. Because I am allergic to aspirin and sulfate, I had to start taking Xeljanz. I took the last week of Budesonide along with starting the Xeljanz. In about four days I had my first almost normal poop. I am on a strict diet now. My hair is falling out in large clumps, but I don't know if it's from the Xeljanz or the stress of losing 30 pounds in a little over 60 days. Good luck with the Xeljanz!

Probably from the flare. That's a lot of weight loss.
Posted 6/12/2021 8:37 AM (GMT -6)
Sara14 I don’t think you should be sacred of Zeposia. My GI who is one of the top IBD doc in western Canada thinks it is very safe. Safer in fact then the JAK family. His counterpart in the states have been using it off label the last 6 months with good success. Also it can be very fast acting. Good luck!
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