Starting Xeljanz

Thank you, CCinPA and UCyousee! I hope so as well! Really appreciate you all. I still need my labwork to confirm but I feel well at least!

I hope the Stelara works for you, UCyousee! Yeah, that would be nice.

Sara14 said...
I think I'm in remission (knock on wood)! I stll have to get labwork again in a week or two and see what that shows, but I feel like I'm in remission! I'm still on the higher dose but I don't really care anymore, lol.

Wonderful news

Rusty Barr said...
Hi Hambo

I’m curious as to why Clipper and not Prednisone?

Rusty Barr, I think Hambo quoted me but the quote marks went askew. Prednisolone doesn't work for me, even if IV (intravenous), but Clipper (gastro release beclametasone diproprionate in a low dose) does usually helps to get a flare-up under control. I also have major side effects from medium to high doses of Pred.

The Xeljanz alone wasn't working but the combination of Clipper and Xeljanz has worked well to improve my symptoms. It's not a long term solution though so I'll be switching to Stelara soon.

Hambo: I started Xeljanz June 15. I don't know exactly when it first started to work because I was on prednisone when I started it. I still had some mild but annoying symptoms for a few weeks after getting off pred. I would say I started to have no symptoms around week 9 of Xeljanz. I currently usually have 2 BMs a day, no pain, no blood. I am scared it will stop working though. I don't want to jinx myself. I even stopped doing my Rowasa enemas nightly and had been on those nightly for many years. I do them maybe once or twice a week now but might not even need to do that.

Thanks, Rusty! Glad you made this thread. I believe Clipper is similar to Uceris (budesonide) in the U.S. Someone please correct me if I'm wrong.

Interesting, thanks. I've not heard of it available in the U.S., but I could be wrong. Thanks for sharing.

So. Went to see my GI this morning. I think my guy is great.
This was my 8 weeks on 10/10 of Xeljanz follow up appointment.

Shared with him my frustration with Xeljanz, that I was hoping at 8 weeks to be in remission.

Most of these 8 weeks. I get up, one decent soft bowl movement with normal stools.
Then about an hour later. Loose movement.
Then 2 to 4 loose/watery movements from afternoon to bedtime.
Those loose movements often have chunks of normal stool mixed in there.

He basically said, we will go another 8 weeks, then, if I’m still not there, in remission, we are going to move to something else.
We didn’t talk about the “what next”.

I asked about Clipper. (THANKS forum friends!)
As maybe we could try that, in addition to the 10/10 of Xeljanz every day, to help me get over the hump. I’m in South Carolina USA, so, he had to look it up on his phone to make sure he knew exactly what I was talking about.
Yup, here it is budesonide.

He said, we could give that a try. He’s calling it in to the pharmacy as low dose, three times a day.
Once I pick it up later today I’ll update this post with more drug specifics.

I also told him about some of the cramping I get at times.
He said take 1 Dicyclomine 20 mg every day.
( I already have some of that in my medicine cabinet)

I’ll update more later.

Post Edited (Rusty Barr) : 8/31/2021 7:16:07 AM (GMT-6)

No, it's not. I always got it through my local CVS. I took it for a long time. I don't know what he means by low-dose. It only comes in one dose in the U.S. 9 mg once a day. That's for Uceris which would be the correct medicine for UC. I believe Entocort, which is more for Crohn's, may come in different dosages, but I'm not sure about that. Uceris and Entocort are both steroids but released in different areas of the GI tract. Let me know what you get.

Clipper is beclomethasone not budesonide.

poopydoop said...
Clipper is beclomethasone not budesonide.

Yes, as stated in my earlier post, Clipper is Beclametasone Diproprionate, not Budesonide, Rusty Barr. It's only similar to Cortiment in its delivery (gastro release). As per my earlier post, prednisolone (even IV) and budesonide don't work for me. Beclametasone is also used in asthma inhalers, nasal sprays and creams for eczema and psoriasis (it's also known as Beclamethasone in some countries).

Here's the leaflet:
https://www.medicines.org.uk/emc/files/pil.6417.pdf

It's manufactured in Italy so perhaps it's not available in the US. Sorry if I've given you false hope that you can get hold of it :-/

If you can get hold of it it's definitely worth a try before having to go on a higher dose of Pred.

Rusty for what it's worth... I don't think you can put a time scale on remission... if the Xeljanz is working for you then you'll keep seeing improvements even if it goes slower than you would like. In that sense your GI is being sensible in suggesting waiting another 8 weeks then re assessing.

Have you been monitoring your inflammation with calprotectin (doesn't work for everyone but for me it has always been a good marker of how my gut is doing).

I personally wouldn't add steroids right now unless your symptoms are intolerable because if you improve you won't know if it's the Xeljanz or steroids that are helping you

P.S. Do not feel bad for advocating for yourself and telling him what you found out.

Just got back from bum rushing my GI’s office without an appointment. He was totally fine with that. I felt awkward doing it though.

Anyway. He said the Generic Entocort capsules WILL work somewhat. He knows that primarily for Crohns. The main reason why he said he didn’t prescribe the generic Uceris time release 9 mg tablets is because he didn’t think my insurance with Cigna would pay for it.

My copay on the generic entocort yesterday was zero. As was my last Xeljanz refill.

So, he called in the uceris to my cvs this morning. I already got a text from cvs that “your RX is pending insurance approval”

I’m pretty sure I met my copay (I think it’s $4k max out of pocket before it pays 100 percent) with Cigna already (the “Xeljanz manufacturer club coupons” covered all that I believe).

I’ll guess I’ll find out soon.

Praying it goes through, I can pick I up at cvs today and I can try the Uceris in a short course.

Post Edited (Rusty Barr) : 9/1/2021 8:09:15 AM (GMT-6)