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Ulcerative Colitis
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Posted 12/3/2023 4:00 PM (GMT 0)
I was first diagnosed with UC in 2000. (however Dr. now says i have Crohn's) Given Prednisone and Asacol, took Asacol for a year or so then tried Sulfazine, then Colozal. In 2008 began Remicade, it was heaven sent. Stayed on Remicade off on on until 2023 (tried Cimzia, Entyio, and Humira) but mainly Remicade the entire time. Around April of 2023 it seemed like Remicade was loosing with effectiveness (they also moved me to the biosimilar) and i tired Humira again as a test. With a little less effect, so with my Dr. Suggestion we moved to Stelara around June 2023. Stelara never did much for me maybe a little bit and even moved to monthly injection for a few months. Had a colonoscopy 11-3 and had inflammation in rectum (which has always been my case). I decided to move on to Rinvoq I have taking 45mg for 2 weeks and have not seen any huge improvement. I mean i can tell it is doing something but not the magic pill i had hoped for. From what i have read the longer you take the Rinvoq the better it gets but i must admit i am very worried it will not work for me. I have read alot of people had huge improvement in a few days. I am also take 10mg of prednisone as i have not been able to get off it totally for a few months. I have noticed some burning in my chest/abdomen as of late also. I am just hoping for better days during this 12 week loading does phase..... I am still able to function but no where near as good as i was when i was taking the Remicade. Hopefully i just need more time for Rinvoq to "kick in".
Posted 12/8/2023 11:51 AM (GMT 0)
Rinvoq loading dose worked for me quickly and within 5 days I was having normal poops.
But then I failed it within 5 months. So how fast you respond is not an indicator of how long it will last.
Interesting that you had issues with Remicade after moving to a biosimilar, did you try the Remicade brand again later or did you develop antibodies?
I hope you feel well soon.
Posted 12/8/2023 12:29 PM (GMT 0)
So my Dr was saying almost impossible for insurance to approve Remicade over Inflectra due to cost. Plus in my mind no way generic would work for me.

I may get antibodies test for Remicade if not great results from Rinvoq. However I do believe the Rinvoq is helping. Just went down to 7.5mg prednisone Tuesday.

Just for more info I have a rectal stricture I have had for about 5 years that I get dilated.

I guess I am kinda making it hard for the medication....;)
Posted 12/17/2023 12:03 PM (GMT 0)
I am close to finishing my first 45mg bottle . I also reduced my prednisone to 5mg 4 days ago...i can tell my symptoms are starting to come back. Hopefully, I will get better with more time...but I am worried.
Posted 12/17/2023 6:26 PM (GMT 0)
twinn-burner, what kind of symptoms are you having? I know it's hard starting new meds, everyone reacts so differently.

Have you been in contact with your dr, maybe you need to reach out to him.
Posted 12/18/2023 12:23 PM (GMT 0)
Symptom wise i am doing pretty good for the most part. I have also been using Canasa Suppositories also (but not sure if they are helping). I also noticed a burning sensation in my upper abdomen but I am thinking that is from taking 10mg of prednisone for months while i as testing out Stelara (possible Gastritis), I have been taking Prilosec to see if that will calm the burning down. Alot of this could just be in my head also as i have been fearful since I stopped taking the Remicade for so many years. I plan on getting a Calpractin test this week as a gauge.
Posted 12/18/2023 11:06 PM (GMT 0)
Given what you have just stated above, I would give Rinvog more time, I would also stay with the suppositories too. I have crohns & had terrible proctitis.

We get stressed anytime we try a new medication. Hang in there.
Posted 12/31/2023 12:15 PM (GMT 0)
Just a quick update...I had a Cal test done and it came back a 71. I know that is decent/pretty good. However I have not been able to fully drop the prednisone as i have still had to take between 5mg and 7mg daily. However overall I just don't feel too good. I mean I still can function and do all my normal stuff just not how I think I should feel. This was my first Cal test ever done (even though I have had the condition 20+ years). So i think it is a decent baseline, I will get another 1 done once I am close to finishing my 12 weeks at 45mg to see if we see any improvement. The only real symptom I am having is minor pain/burning and discomfort in my gut/colon. Not having any urgency or multiple bowel movements throughout the day.....I don't know what to say....Just did not think I would feel like this.....
Posted 12/31/2023 7:09 PM (GMT 0)
Your calprotectin is quite good considering everything. In your original post you talked about the burning & taking a PPI. Back years ago when I was taking pred the burning got so bad I was taking Mylanta/Maloxx. I won't touch the stuff now with a 10 foot pole.

Try to think more about how well you are doing & be a little more patient with cleaning up the residual junk. I know easier said than done.

Take care.
Posted 12/31/2023 7:52 PM (GMT 0)
True, the Dr has me scared with the stricture as he feels that might be my biggest issue. Which to me is certainly an issue but I think it is more a medicine issue as I noticed when was taking 20mg prednisone and Rinvoq I was going number 2 "very good"....meaning the rectal inflammation is a huge factor in my stricture. In the new year I am going to try to move to a rectal steroid in hopes to drop the prednisone all together.....we will see. Really worried the Rinvoq is not strong enough for me.
Posted 12/31/2023 7:58 PM (GMT 0)
I definitely needed the full loading dose of 45 mg to notice anything. I wasn't a quick responder whatsoever. It was a slow working drug for me compared to Remicade and Simponi (those worked overnight for me). I think it is because Rinvoq is a pill and the others go straight into your bloodstream. The drop to 30 mg was uneventful and I was also able to get off of prednisone around the same time. I hope you can do the same! My UC also causes immense pain and burning and I know how debilitating and scary that is. I am now on 15 mg but stayed at 30 mg for a few months before dropping. No noticeable difference either which is good.
Posted 1/1/2024 7:12 PM (GMT 0)
Regarding prednisone...ask your doc for 1mg dosage pills and taper by 1mg. As well, do an alternating dosage. Increase it to what you were at before symptoms showed again and taper at smaller increments.....eg, 5, 4, 5, 4, 5, 4....4, 4, 4, 4...4, 3. 4, 3, 4, 3,...etc.

q
Posted 1/7/2024 2:17 PM (GMT 0)
quincy, thanks for the suggestion.

So i used my first Rowasa yesterday. (easy, but did not really like the feeling of the liquid in my colon)
Is it silly for me to think it may help considering I am might have Crohn's in my rectum?
Considering it is really for UC....
Posted 1/7/2024 8:59 PM (GMT 0)
Mesalamine is used for both. Your experience will tell if it's sucessful for you or not. Many CDers with rectal inflammation have used it. To me...it's magic (35 years), but highly underrated. Be consistent with it and I hope you see improvement...which is the point.

q
Posted 1/16/2024 3:20 PM (GMT 0)
about to start 3 bottle of 45mg today.
I read so many post from people saying it took 3 days for remission then some say it took 4 months.(all over the place really)
I mean technically, I can tell the Rinvoq is doing something just worried not enough.(so i am having a response)
Is it silly for me to think Rinvoq would work considering I needed Remicade at 10mgKg every 4 weeks?
I am feeling a little pain/throbbing in colon on left side....not a good sign normally.
I added Budesonide rectal foam in hopes to get off Prednisone. (stopped the prednisone)
Rinvoq site says 12 weeks then steroid free...(i have been taking 45mg 8 weeks so far)

Just venting....

Post Edited (twinn-burner) : 1/16/2024 7:26:47 AM (GMT-8)

Posted 1/16/2024 4:44 PM (GMT 0)
twinn-burner, vent away we understand. You are right about the stories of people's response being all over the place. With that being said, in all honesty I've seen that happen with many drugs.

I wouldn't worry about the Remicade & the 10kg dose. I was on it for 6 months before I could say it was working. I ended up 10kg every 4 weeks for crohns.

From what you have written here you are seeing a response, you aren't getting worse which is a good thing.

Take care.
Posted 1/16/2024 6:05 PM (GMT 0)
I agree with the not getting worse being a good thing.

q
Posted 1/16/2024 10:21 PM (GMT 0)
There is not a fixed time to respond. It is common to feel better in a few days (which is not the same as remission), but some people also need a few weeks before they notice anything, and one is not better than the other. The only way to know if you're in remission is with a c scope, I doubt anyone is truly in remission after 3 days. I was a slow responder to xeljanz (7 weeks before my calprotectin started to drop and 4 months to reach remission - confirmed with a scope), and this week is my 5 year anniversary.
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