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Ulcerative Colitis
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Posted 10/2/2023 6:19 PM (GMT 0)
I had an appt. this morning with my GI doctor at VA Hospital. She was pleased with my progress and being responsive to TOFACTINIB. She is dropping my meds from two (10mg) to one (5 mg.) a day starting next week. Just wanted to share some good news on this med from my experience after two months. Humira and Remicade did nothing for me and thus I had to suffer 6 months culminating in being hospitalized for 10 days in August. So nice to venture out again without fear of exploding bowels within 10 seconds!
Posted 10/2/2023 7:19 PM (GMT 0)
Great news that somethings working.
Oldmike
A 1/15FA 2nd ID,Korea 1971
Posted 10/2/2023 10:12 PM (GMT 0)
Always good to hear something good!
Posted 10/2/2023 11:43 PM (GMT 0)
Please double check that dosage. Maintenance dose is 5 mg twice a day, I have never heard of anyone doing 5 mg once a day. You are doing well. You don't want to go backwards.
Posted 10/3/2023 12:57 AM (GMT 0)
Great news!

I am glad you're doing better,!

Clo
Posted 10/3/2023 11:22 AM (GMT 0)
Great news!
Posted 10/3/2023 12:57 PM (GMT 0)
ALWAYS good knowing that someone is doing good!!! Congratulations and continue on!!!
Posted 10/3/2023 1:37 PM (GMT 0)
CCinPA.......I will keep that advice in mind. I still have plenty of 10 mg. on hand.....don't want to backslide.
Posted 10/3/2023 2:19 PM (GMT 0)
Wayne, I agree with CCinPA, 5mg as a maintenance dose does not sound right, typically it's 10mg. I would send the dr a note on your patient portal to verify this, the pharmacy may have made a mistake.
Posted 10/3/2023 4:50 PM (GMT 0)
💜💜💜💜💜💜

The maintenance dose is indeed 2 x 5 mg per day. If you've been doing 1 x 10 mg per day you are already on the maintenance dose. Normally the induction phase is 2 x 10mg per day....
Posted 10/3/2023 4:58 PM (GMT 0)
@poopydoop, you did not read his post correctly, he was on 10mg & his dr dropped him to 5mg, one tablet a day.
Posted 10/3/2023 5:32 PM (GMT 0)
Congratulations and a well deserved improvement. I hope the dosage gets figured out to get you into a long remission!

q
Posted 10/3/2023 6:10 PM (GMT 0)

straydog said...
@poopydoop, you did not read his post correctly, he was on 10mg & his dr dropped him to 5mg, one tablet a day.

I did read his post correctly, I am querying if he actually took 1 or 2 tablets per day up to now. If he only took 10mg once a day then he has been on the "maintenance" dose the whole time up to now. Fwiw there is a 10mg once-a-day formulation of xeljanz, not normally used in UC patients, who normally have a split dose twice a day.

Post Edited (poopydoop) : 10/3/2023 10:14:16 AM (GMT-8)

Posted 10/3/2023 6:16 PM (GMT 0)
So glad you are finding relief, Wayne! I know we were sick around the same time and am happy Xeljanz kicked in. I know nothing about the dosage for that medicine but always check with your doctor to make sure its enough for you. I am going down again in dosage as well as doing bloodwork and stool tests to check if its the right decision to decrease the medicine.
Posted 10/5/2023 12:54 PM (GMT 0)
poppydoop........my GI had me taking 10 mg. pills of Xeljanz twice a day and now wants me to cut back to just one 10 mg. pill a day. I was mistaken in saying 5mg. I do wonder if the drop in usage will be a plus or minus. I have plenty of 10 mg. in stock so it is my call to make.
Posted 10/5/2023 4:04 PM (GMT 0)
Wayne, 10mg is the maintenance dose, myself I would drop to 10mg. No point in taking more of something unless there is a need for it.
Posted 10/6/2023 6:34 PM (GMT 0)
Point well taken.......new meds arrived today.....TOFACITINIB 5 mg. take twice daily = 10 mg.......switching over tomorrow.
Posted 10/6/2023 9:34 PM (GMT 0)
Very glad to hear you’re doing so well on the new meds after that rotten time you had. Always encouraging to hear the good news stories!
Posted 10/7/2023 2:35 PM (GMT 0)
agree....good news is uplifting because I sure did go through Hell for 6 months to fully appreciate being able to say something is finally working. I had not been in-patient hospitalized since my Army days (68-71) but severe colitis took me down and hospitalized me for 10 days in August. I have never been hospitalized that long my entire life.
Posted 10/7/2023 9:10 PM (GMT 0)
So happy for you Wayne!!

Here is to a lifelong remission! It is always great to hear or read about someone in remission and doing well. It gives the rest of us hope.
Posted 10/13/2023 3:32 AM (GMT 0)
so far so good......have dropped to Xeljanz 5mg. twice daily now for a week and still working. Glad to drop to 10 mg. daily maintenance dose without issues. I see GI again on Nov. 6 at VA. Hope this keeps on track......the first 7 1/2 months of this year was basically a nightmare finally ending up in the hospital in August. Nothing they gave me worked until Xeljanz. I am now going out with no reservations. Hope this inspires others that relief can be found.....just keep trying.
Posted 10/13/2023 1:38 PM (GMT 0)
It's always good to read positive stories, it gives others hope. Please keep us updated.

Enjoy the cooler temps in Texas!!!
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