I had a flex sig recently that showed both disease extension and increase in severity since my last in January. What’s crazy is (lucky?) is my symptoms aren’t any worse than they’ve ever been. Not a lot of pain and basically functional. I have some insidious sneaky inflammation happening. Or I’ve just learned to tolerate symptoms… So I’m saying goodbye to Tremfya for good. Doc gave me the choice of Rinvoq or Remicade and I’m leaning towards Rinvoq. Hoping to sidestep prednisone and get approved fast for the next therapy.
Wish me luck! How is everyone else doing?
UP up to recto-sigmoid - dx’ed 2014.
Current meds - Tremfya (on dose number four), 4.8g Lialda, 4g Rowasa EOD, Pepcid 20mg, minoxidil 2.5mg, tadalafil 5mg
I hope your new med change helps!!!
I am on Tremfya too and got home from my scope a bit ago. My rectum is a mess but everything above that looks fine he said. Curious what the biopsies will show… I am symptomatic and have a few ulcers in my rectum and he biopsied those. My gosh the pain tonight has been excruciating. Lightning rod shooting up my butthole style pain. I pick up my steroid suppositories soon I hope. I just want them to work so I can feel a little more normal again.
I am on Tremfya too and got home from my scope a bit ago. My rectum is a mess but everything above that looks fine he said. Curious what the biopsies will show… I am symptomatic and have a few ulcers in my rectum and he biopsied those. My gosh the pain tonight has been excruciating. Lightning rod shooting up my butthole style pain. I pick up my steroid suppositories soon I hope. I just want them to work so I can feel a little more normal again.
I am sorry to hear that the Tremfya isn’t doing the job, but it is a relief that your symptoms haven’t spiked alongside the inflammation.
Moving on to a new therapy can be stressful, but many have had great success switching to options like Rinvoq.
It’s good that your doctor is being thorough with the biopsies, but the waiting game is always the hardest part.
Are you at the max Tremfya dose frequency? I didi three months on 200 mg monthly before calling it quits. I hope the steroid supps work for your symptoms. Rectal pain is the worst. I’m doing three months straight of hydrocortisone enemas as a bridge to whatever medication I’m headed to next (Rinvoq prior auth got denied by insurance. Waiting for the appeal result). They’re the only med out of five I’ve tried thus far that has relieved bleeding.
Keep us updated on your biopsy results and keep the faith.
UP up to recto-sigmoid - dx’ed 2014.
Current meds - Tremfya 200mg, 4.8g Lialda, hydrocortisone enemas (failing all of these!) Pepcid 20mg, minoxidil 2.5mg, tadalafil 5mg
Keep us updated on your biopsy results and keep the faith.
UP up to recto-sigmoid - dx’ed 2014.
Current meds - Tremfya 200mg, 4.8g Lialda, hydrocortisone enemas (failing all of these!) Pepcid 20mg, minoxidil 2.5mg, tadalafil 5mg
Hey Guigsy! Sorry your insurance is being a jerk!! I swear they make things so hard when it doesn’t have to be. I have no rectal med coverage on medicare (so stupid) so my GI prescribed steroid cream that I insert up there. I take 200 mg. Luckily, my colon looks great so it is just an inch of inflamed rectum. My pharmacy didnt have any steroid cream for 5 days (they had to order it) so I am only 5 days in with it now. Not sure how long it will take to work since it is not technically designed for this usage. 12 suppositories were $227 (goodrx) and I knew I would need at least a month of them so am trying cream first.
Joanna, 36, Pa
Formerly known as bananagirl
Diagnosed with UC at 16. Tried remicade, humira, simponi, rinvoq and now on tremfya. Definitely no picnic but I am not dead yet! Hoping we get some drugs that work without trying to kill us at the same time.
Joanna, 36, Pa
Formerly known as bananagirl
Diagnosed with UC at 16. Tried remicade, humira, simponi, rinvoq and now on tremfya. Definitely no picnic but I am not dead yet! Hoping we get some drugs that work without trying to kill us at the same time.
Guigsy - Gosh I’m sorry you’re having trouble and I hope you can get a new med approved soon that works for you. Rinvoq seems to be one that works a treat and quickly but does also seem to often come with unpleasant side effects. For those with active UC it’s often a reasonable trade-off in our minds. Have you tried any other remedies in addition to your prescription meds? Just curious. I was having some nagging symptoms and mild patchy inflammation on biopsy and then I tried Visbiome probiotic and I don’t know if it was coincidence or what (I changed nothing else) but my last scope in January showed complete remission and I have been symptom-free. I haven’t been taking it, either, for a little while now so I wonder if it just gave my microbiome the nudge it needed? Just a thought. Keep us posted!
Bacon Girl - I really feel for you because I know from my mom’s experience that the rectal inflammation is the worst. It seems to be harder to get medication to work on that area. She has a new lease on life thanks to Skyrizi but she is still not symptom-free. I wonder why it’s more stubborn for some people in that area, though for my mom I know she resisted the biologics for years so it was left basically unchecked for a long time. And I will never understand why Medicare coverage seems to be so much more difficult and assistance programs won’t help at a time when people need it even more. My mom has had issues, too. Keep us posted on how you’re doing!
49 F
Diagnosed UC 2010
Entyvio every 8 weeks since 2018, Lialda, Visbiome probiotic
In remission
Bacon Girl - I really feel for you because I know from my mom’s experience that the rectal inflammation is the worst. It seems to be harder to get medication to work on that area. She has a new lease on life thanks to Skyrizi but she is still not symptom-free. I wonder why it’s more stubborn for some people in that area, though for my mom I know she resisted the biologics for years so it was left basically unchecked for a long time. And I will never understand why Medicare coverage seems to be so much more difficult and assistance programs won’t help at a time when people need it even more. My mom has had issues, too. Keep us posted on how you’re doing!
49 F
Diagnosed UC 2010
Entyvio every 8 weeks since 2018, Lialda, Visbiome probiotic
In remission
Sorry that you are having additional med/insurance problems, Quigsy and BG. It seems like the biologics opened yet another can of worms for many IBDers. I've lately needed to deal with endodontist (frightfully expensive) plus another periodontist who knows nothing about IBD except that steroids can harm gum tissues/ligaments connecting teeth. I left my 2019- periodontist last year after he said he "would give me a dental implant that would help my UC, too"!!!! What an ego! That immediately infuriated me-- so I yelled at him that my gastroenterologist who has tenure at a major medical center/university helps my UC! Some of the experiences we encounter while seeking reliable health care really are The Pits. / Old Hat (40+ yrs with left-sided UC; longtime remission thanks to Colazal, but Salix has discontinued producing it!)
Luckily, the steroid cream worked and I haven’t had any flare symptoms at all. I did get sick at the end of April and am 17 days in to a wicked sinus infection and tonsilitis. Also had a lack of appetite, nausea and fever so April and now May has just been really rough. The pcp gave me antibiotics but Im trying to not take them. I just stopped pooping myself and dont wanna risk getting c diff. I am hoping by 3 weeks I will have kicked it naturally but if you guys have any amazing supplements/remedies you like for the sinuses/throat pain, please share!
Joanna, 36, Pa
Formerly known as bananagirl
Diagnosed with UC at 16. Tried remicade, humira, simponi, rinvoq and now on tremfya. Definitely no picnic but I am not dead yet! Hoping we get some drugs that work without trying to kill us at the same time.
Joanna, 36, Pa
Formerly known as bananagirl
Diagnosed with UC at 16. Tried remicade, humira, simponi, rinvoq and now on tremfya. Definitely no picnic but I am not dead yet! Hoping we get some drugs that work without trying to kill us at the same time.
Elderberry, Echinacea, zinc lozenges, honey, peppermint tea
MODERATOR-UC FORUM
female - diagnosed with moderately severe proctitis/colitis/mild diverticulitis
6mp - 50 miligrams
Lialda
Repatha - 140 miligrams
Prolia - 60 mg
Calcium with Vitamin D
Zinc
folic acid
"Fly under the radar" - Dad -
MODERATOR-UC FORUM
female - diagnosed with moderately severe proctitis/colitis/mild diverticulitis
6mp - 50 miligrams
Lialda
Repatha - 140 miligrams
Prolia - 60 mg
Calcium with Vitamin D
Zinc
folic acid
"Fly under the radar" - Dad -
Bacon Girl said...
Luckily, the steroid cream worked and I haven’t had any flare symptoms at all. I did get sick at the end of April and am 17 days in to a wicked sinus infection and tonsilitis. Also had a lack of appetite, nausea and fever so April and now May has just been really rough. The pcp gave me antibiotics but Im trying to not take them. I just stopped pooping myself and dont wanna risk getting c diff. I am hoping by 3 weeks I will have kicked it naturally but if you guys have any amazing supplements/remedies you like for the sinuses/throat pain, please share!
Goodness that’s a lot! Sorry to hear you’ve been dealing with all that. My mom swears by nasal irrigation. It sounds terribly unpleasant to me and I’ve never tried it myself, but I also don’t have sinus problems and only ever had one sinus infection years ago. But she has used it regularly and says it really helps.
49 F
Diagnosed UC 2010
Entyvio every 8 weeks since 2018, Lialda, Visbiome probiotic
In remission