HealingWell
Search Close Search
☰

Started Xeljanz today

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/26/2017 1:42 PM (GMT 0)
Started this today, 10mg twice a day. I hope to see improvement soon! I'll keep you posted. I have been Awful since my scope!! I will take anything at this point!
Posted 10/26/2017 2:05 PM (GMT 0)
Good luck! Sending good thoughts your way.
Posted 10/26/2017 2:09 PM (GMT 0)
Good luck!
Posted 10/26/2017 4:28 PM (GMT 0)
Keep us updated how you do on it......hoping this is the one!

q
Posted 10/26/2017 11:02 PM (GMT 0)
TAM--
Hoping this does the trick for you! But lemme tell you, I am SO MUCH better now with my ostomy!
Posted 10/26/2017 11:45 PM (GMT 0)
Hope it works for you!!
Posted 10/29/2017 8:41 PM (GMT 0)
Tonight will be a full 4 days on med. I get like ...I’m feeling a bit of a cold coming on, tired and cold, but no cold. I take Tylenol and I feel better. I know this has happened with other biologics when i took them. Before. Just my body adjusting.getting under a heated blanket me me feel good too!

On a nice note, I thought I was going to poop and a dry fart came out. Went to the grocery store, got all cramped in stomach and went to bathroom and thought I would be there for hours, I did some smelly D and I was able To get up and go.

Things are looking up I think.


turn turn
Posted 10/29/2017 10:38 PM (GMT 0)
Good luck
Posted 10/29/2017 11:11 PM (GMT 0)
Best of luck to you. Sending positive energy your way.
Posted 11/1/2017 1:15 PM (GMT 0)
I’m not going to lie, I feel terrible on 10mg twice a day, I went to 5mg twice a day and feel much better. I did call my doc and explained my side effects , almost feel like like pneumonia coming, very tired just to even walk, a slight fever 99.3 , aches , out of breath. The nurse said she would pass along the info. Studies were done at 5mg and a 6% drop in remission for those this worked for. 10mg is kicking my butt. Besides that my ulcers are bleeding so bad and I feel so much pain. My colon was swollen last night (filled with poop) I couldn’t pee much. I’m back on Metamucil, 3 Times a day with meals , this will help. Probiotics make me poop too much! Drug checker says don’t be on steroids with it, but man I feel like I need them., just to ge tth8ngs to calm down. I know Suzy q husband is in both. Not sure if I should take them for a bit. Suzy q said her husband knew within 2 weeks, meds started to help, I’m 6 days in. I just haven’t felt this horrible ina long time, the blood is severe in my eyes when I do go to the bathroom.
Posted 11/1/2017 6:57 PM (GMT 0)
I am sorry you are feeling so lousy. My recollection is that people on 5 mg twice a day still had good response. May be you have to build up to 10 mg. Xeljanz is the first biologic my husband is on that did not make him feel awful (exhausted, general malaise etc.) He is still on prednisone (weaning down) -- no doctor suggested he should not be on both steroids and Xeljanz. So based on personal experience I wouldn't worry about it, but that's a call you need to make with your doc.

For better or for worse, the study measured remission or no remission at 8 weeks. While my husband was in an active flare when he went on, it sounds to me like you are worse off than he was so it may be a matter of time. It is probably too soon to determine whether or not it is working. But in another few weeks, if there are no changes and you cannot tolerate more, you may need to revisit.
Posted 11/2/2017 9:56 PM (GMT 0)
My docs response to my side effects is....the cold/sinus is going around. Well that maybe true, but back on 5mg I don't feel like dog poop, so anyways I'm bumping back up to 10mg, if you could see what coming out of me in the toilet, you'd throw steriods on it too! I think my fistula is open again sad Trying my best to stay positive, but this getting to me. Dang it. I haven't worked out in a week and that's bumming me out too. No energy and too much work right now. I will try to go tomorrow , even if it's 10 mins of light weights.
Posted 11/4/2017 3:37 PM (GMT 0)
Any improvements?
Posted 11/4/2017 4:07 PM (GMT 0)
I'm 8 full days in, somewhat, maybe, can't really tell. Still bleeding and lot of pain when bleeding!! This morning, of course, lot of bathroom trips, but they didn't stink as bad. LOL. I backed down for two days to just 5mg twice and day, last two night I did 5mg in am and 10mg at night. Today, I'm back on full dose. I just need to have side effects go away for a bit, without stopping the meds completely. I really was losing my breath on it. Exhausted. I started back on iron too, liquid. I'm sticking with the medication, because I have no choice at this point. I hope the side effects stay a bay , while I up my dose. I would rather swallow pills then the shots I had to give myself on Stelara. I had anxiety over that needle and injecting medication.

Thank you so much for asking SQ, because your husband story gives me hope. I saw another post where it didn't help someone else, so I'm like, dang it, I just want to hear that it works!!!

Please don't get off this forum, your husband's story really helps people! It so nice you have been his advocate for better health!!

P.S. I'm not on pred right now, I'm afraid to take down my immune system too much right now.
Thanks again!!! I don't feel alone on this forum!! I feel my husband just hears me complain all day long about my bathroom trips, poop, pain and blood.
Posted 11/4/2017 7:25 PM (GMT 0)
I am hopeful too. I think someone posted study results recently and they were positive. On the bad side, my GI has a close relationship with the study coordinator at the hospital and she said she had sent many refractory patients and none had luck, and she didn't recommend it for me since I was so ill. I have zero regrets abotu having surgery and being done with it all, but in your shoes I would do exactly what you're doing. Stay positive. You could be one of the ones who do have success, there's absolutely no reason you shouldn't be! I think it's smart to avoid pred if you feel like your immunity is weak, especially with the exhaustion and shortness of breath. If you have blood pressure or heart-rate changes, you should go to the ER because all of that can be signs of sepsis.
Posted 11/5/2017 2:25 PM (GMT 0)
I had a horrible night, could be cuz I started iron. Nothing is staying inside of me sad day nine and no improvement. I had to pull over while driving and run Into the woods last night to poop. I was hoping and wanting to believe things are better, but they are not. I almost thought I should go to Er. Lots of blood and chills. I’m going to give a few more days, if not, I’m calling back the doctors.

What is the best medication That reaches up into the colon, rowasa? I need something. I have rectal foom , but it not a lot of medication you put in the syringe, so it can’t go up high can it?

Thanks
Posted 11/5/2017 3:36 PM (GMT 0)
Sorry to hear. Yeah a rowasa goes the furthest. Iron can be tough on the gut and cause diarrhea...
Posted 11/5/2017 8:36 PM (GMT 0)
Maybe instead of prednisone you want to try a steroid enema? They go as far as rowasa but have some steroid power. They are much safer and much less side effects if any.

I've been following your story and hope you can find some relief with this new med. Hugs!!!!!!!
Posted 11/6/2017 3:51 PM (GMT 0)
Why are you taking the iron? Maybe you should back off on that for a few days to see whether that could be contributing to the intestinal challenges.

If you go off the iron and things are still acting up, then it may be the Xeljanz. I don't think you need to give up hope yet but you probably should be doing better with symptoms, not worse.

Chills don't sound good. Doctors seem dismissive of biologic side effects sometimes, because they just read the literature. I know with my husband that every time he has been on biologics (with the exception of Xeljanz), he feels like he's been hit by a truck. He takes Prolia two times a year (for steroid-induced osteoperosis) which is a biologic and sure enough, he feels like he has the flu for about 10 days.

I hope today is better than yesterday.
Posted 11/6/2017 6:44 PM (GMT 0)
I have low iron. I have UTI, started Cipro, doing better since stopping iron, but still bleeding a lot . I have call into doc asking for steroid enemas or something that can reach up further. I wrote them a nasty note in a way, saying I’m tired of doctors doing scope, throwing a med at me and not returning call but through their nurse three days later. He hasn’t even gone over my scope with me and won’t until January!! Very hurt.
Posted 11/7/2017 5:00 PM (GMT 0)
The Cipro tears me up every time, so my guess is that is what is making your D worse. The chills and general feeling like dog poo can be attributed to the Xeljanz and then possibly the UTI.

If you are pooping in the woods then I doubt you can retain a rowasa enema long enough to matter. You need to try steroid foam if anything--either Uceris foam or Cortifoam (I had better results from Cortifoam). Also, start wearing depends until your D is under control--the silouette depends are very comfy and I even wore them with leggings! Kind of pricey but I used my HSA account to purchase them.

My GI doc's rule was I need to go to the ER if I spike a fever over 100°C, which, I ignored that more than once but if you are having low-grade or high-grade fevers and are in distress then go to the ER--that'll get your GICs attention. I fired a GI and wrote a letter using words such as "negligence" when his nurse declined to call me back within 24 hours when I was in distress like you are. To me it sounds like your GI sucks.
Posted 11/7/2017 5:19 PM (GMT 0)
Plucky , don’t sugar coat it! Bahhhha, yes my GI tract is getting better
✚ New Topic ✚ Reply