New to Biologics (Rinvoq) and have some questions!

Hi Natasha, there seems to be some confusion with what your nurse said or how you heard it.

There are risks from long term steroid use, but it's not cancer that is the concern. It's other things like high blood sugar (diabetes), high blood pressure, glaucoma, osteoporosis, thinning of the skin, fat increases in unusual places, increased risk of opportunistic infections, etc.

As for RInvoq, it's a new drug that often gets lumped in with the biologics, but technically it's not a biologic. It's a small molecule oral medication (ie, a pill), made chemically, not biologically made.

But you're right that it does have some risks of side effects - as do all medications. Those are only *risks* and you may or may not get any side effects from it at all.

Personally, I don't think one course of prednisone and one course of budesonide is a lot of steroids, especially over a 20 year period. Budesonid is a lot less risky than prednisone.

So while I agree that steroid avoidance is a good target, I don't think you need to worry. If I were you, I'd do full dose Mesavent - and stay on the full dose whether or not you're flaring. And then I'd consider adding rectal mesalamine and a course of budesonide.

If that gets you back in remission, great. If you get in remission but start flaring again when you taper off of the budesonide, then NOW you'd be at a point where you could consider stepping up in treatment.

And if that *doesn't* get you in remission, then that is also an appropriate time to step up in treatment.

As for stepping up, there are so many options now, each with pros and cons (some work fast, some take longer, some are pills, some are infusions, some are self injections, and they all have different risk for side effects). So if and when that time comes, what you should do is talk to your doctor, go over your personal health history and even family health history, see where your health vulnerabilities are, and select a drug that matches best with your personal health.

Post Edited (beave) : 3/12/2024 8:33:06 PM (GMT-8)

Thank you Quincy and beave for the reply!
The budesonide is oral. Last we checked (1 or 2 years ago?) my flare was high up in the colon. I’m not sure rectal meds would help. I will continue talking to the nurse and not be quick to switch meds for now.
Natasha

Thx for replies!

I had a good conversation with the nurse practitioner today, and she explained to me why they’d like to move away from steroids. Along the same lines as the last post, she said that medical advances has made it possible to move away from steroids and that is a good thing, as it used to be the only medicine available for ulcerative colitis. She said steroids, often mask underlying inflammation which, in the long term, can lead to colon cancer, among other things.
Also wanted to clarify the steroid medication is called Cortiment and not budesonide (not sure if that’s the same thing). I will be on Cortiment for a couple weeks controlling the inflammation, and then I’ve decided to do Rinvoq after that.

Thank goodness for medical advancements in the field of UC! Always hoping for more.

Natasha

If I understand correctly, the OP was offered a choice of infusions or pills and they opted for pills, hence the decision to try rinvoq.

OP personally I applaud your team for not wanting to use steroids, they are a short term solution to a long term problem. I have severe osteoporosis from prednisone and while i was taking it for a long time, that was mostly at low doses of 5-15 mg. I spent maybe 6 weeks on a high dose. We never planned for me to be on it long term, it was just supposed to be a 2 month course, but it became 2 years. I am never taking prednisone again, barring a life and death situation, and my gastroenterologist is in agreement about that.

Rinvoq is quite new which means its side effect profile is still being established. Its sister medication xeljanz is associated with an increased risk of blood clots and thrombosis, which is the main factor that potentially makes it less safe than other treatments. There are few comparative studies of the different drugs but initial signs point towards rinvoq being one of the most effective treatments for UC.

I have been on xeljanz for 5 years and it is the only drug that put me in remission. I spent a long time trying to manage on mesalazines only but this was at the detriment of my UC which became severe. Long term untreated or under treated inflammation is a cancer risk and perhaps that's what you NP is referring to.

Some doctors like to use a "step up" style of treatment where you progressively switch to stronger treatments when the level below doesn't work. Increasingly, some feel it is more effective to go in strong at the beginning, to avoid years of simmering/uncontrolled inflammation.