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Rinvoq and severe reflux

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Ulcerative Colitis
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Posted 5/9/2023 5:23 PM (GMT 0)
Hi there
This is my third week on Rinvoq 45 mg/d.

I have throat burning and tightness, also chest heaviness and the feeling of acid going up my throat leaving a burning feeling.

Iam prone to acid reflux but it is usually mild. This is way worse. It is 3 am here in Australia and Iam up because of this.

I take Gaviscon which usually sorts out my regular reflux but isn’t doing near enough for this.

I saw my GI today and I mentioned the reflux and he prescribed Famotidine (I think brand name is Pepcid) which he said is non-addictive and shouldn’t have the side effects of other stronger anti-reflux meds like PPIs.
Iam yet to start it.

Has anyone else experienced anything similar from Rinvoq?
I couldn’t find even find this listed in its side effects! There was nausea but nothing on reflux.

If yes then how did you deal with it?
And did it get better by going on a lower dose of Rinvoq?

Thank you
Posted 5/9/2023 7:05 PM (GMT 0)
I don't think it's an isue with the med as much as it is that your acidity is too high. Since it's a mechanical dysfunction, the goal would be to lower the acidity with meds, diet or both.
Is Rinvoq a tablet? Are you also on systemic prednisone?
I'm curious if your stool consistency has changed in conjunction with the upper gastro discomfort as well?

q
Posted 5/9/2023 7:53 PM (GMT 0)
This happened to me too! I mean I had some reflux issues before but this was astronomical compared to that. A burning in the throat that nothing OTC helped. I went on omeprazole. Didn’t want to but I felt I had no choice. That was way beyond heartburn.

Not on rinvoq , but Entyvio. Can’t help but think something to do with the medication mechanism or UC itself has something to do with it. Genetics too I’m sure. But again the burning I had was so bad I couldn’t stand it and was afraid it was going to damage my esophagus.
Posted 5/9/2023 10:20 PM (GMT 0)
Thanks for the replies

@Quincy: Iam not on prednisone. Yes Rinvoq is a tablet. And no real change in stool form except it took away the mucous, bleeding and pain.

@FlowersGal: your symptoms sound very similar to mine. Interesting that this happened on the Entyvio. I still have Entyvio in my system until the 19th May, when my next infusion is due but will cancel it since Im on Rinvoq. I didn’t experience this level of reflux before though until I started the Rinvoq. It is a whole other level and I have never had anything like it before. Like you said Im afraid it is damaging my esophagus. I’m going to have to start antacid today and see how it helps. After last night this can’t be ignored or taken lightly any longer. It even felt hard to breathe!
Posted 5/10/2023 8:54 AM (GMT 0)
1000x yes but it is better now. i had severe chest heaviness, tightness, and reflux. My doctor even ordered a chest x ray and ekg because of it. Both were clear but it started 2 days after my first dose of Rinvoq. Ive been on it for over a month now and the symptoms have gone away so my body must be used to it. It was definitely scary at first. I would rule out the other stuff just in case. I do take ginger pills daily that have been life changing for my pred nausea so maybe these would help? Sorry you feel like crap, too. We are in this together! Feel free to email me if you want to ever complain personally haha I just went for my 1 month Rinvoq bloodwork to see how things are looking.
Posted 5/10/2023 10:43 PM (GMT 0)
Oh really Joanna you had it too? It is exactly like you described! I was honestly worried it was heart trouble…felt like this huge weight on my chest and like I couldn’t breathe!
I skipped a dose of the Rinvoq yesterday and feel much better. But obviously I have to get back on it. Iam scared to take it. Iam on antacid now though so maybe won’t be as bad.
Did you end up taking an antacid?
Posted 5/11/2023 4:02 AM (GMT 0)
You need to elevate the head of your at least bed 6 inches, this does help. You can buy risers to do this, they are not expensive.
Posted 5/11/2023 11:39 AM (GMT 0)
Yes I thought it was my heart too since I was having problems even walking up my steps. I was so out of breath. Idk what is in this med honestly but it does bad things to the body. I got my 1 month Rinvoq bloodwork back yesterday which was HORRENDOUS. I have a feeling my doctor may change me to another maintenance med. He is out of town but my nurse said he will look at my labs next week and decide what to do. She said I have to go to my PCP asap in the meantime until he gets back. Just never ends.

I didnt take any antacids at all. I honestly just suffered through it but did take zofran and marinol. I started the ginger pills after I was discharged from the hospital on prednisone. That was giving me physical stomach pain and horrible nausea and it helped amazing with that. 3 pills a day. I still do it since I am on prednisone.
Posted 5/11/2023 3:59 PM (GMT 0)
That kind of heartburn pain doesn’t respond to anything but omeprazole and the like. Is there a reason you don’t want to take that?

Seriously nothing helped. I had it sitting up too. Regular antacids used to work immediately on my occasional heartburn. With this volcano heartburn they barely touched it. Omeprazole, etc really isn’t that bad to take. It’s definitely better than dealing with that burn. I did try to go to omeprazole every other day , but the burn returned so I went immediately back to every day. And that works like a charm.
Posted 5/11/2023 7:30 PM (GMT 0)
What do you mean when you say your Rinvoq bloodwork? What exactly was horrendous about it? The bloodwork indicates you are still flaring, you mean?

I got heartburn from prednisone sometimes and Tums helped, but I have not had anything like that with Xeljanz.
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