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Worried about Rinvoq :(

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Ulcerative Colitis
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Posted 5/31/2023 6:09 PM (GMT 0)
Hey there,

In a pretty bad flare. Currently on Stelara but seems to have stopped working. Already tried Humira and Remicade to no avail. GI says Rinvoq is good next step. With Stelara, he always stressed that side effects were pretty minimal if any. With Rinvoq they seem a lot more serious: major blood clots, heart attacks, serious fungal infections, shingles, tears in the intestines, etc. etc. Like *** seriously. This medicine seems to be the riskiest of all I've been prescribed.

Then, on a related note, it always seems like I'm getting prescribed the medicines that are all over television. Four years ago we were talking about Humira (and it was all over TV), now no one is mentioning Humira. Suddenly, the forums are all about Rinvoq and, as it happens, every other commercial is for Rinvoq. It's as though pharma is pushing medicines on doctors to push on patients ($$$). In 2022, Abbvie spent the most money of any company/drug on advertising for Rinvoq. Surprise, surprise.

That said, I'm more just worried about the side effects. I've read some pretty bad stories--albeit on the internet--but would love to hear from anyone here on similar worries or pos/neg experiences with Rinvoq.

Thanks,
D

Post Edited (DavidEA) : 5/31/2023 10:31:47 AM (GMT-8)

Posted 5/31/2023 8:57 PM (GMT 0)
Hey David. I hear you on the concerns over the side effects. I am 2 months in and just finished the 45 mg loading dose. Every one of my lipid numbers went up like 100 points within a month. My nurse said it is an “acute phase reaction” and “should” stabilize once I am on it longer. I told her today that I don’t wanna trade my colon health for a heart attack. Like wth?? My wbc, kidney function and blood sugar is also bad right now all from rinvoq and pred. I agree that the side effects for this seem worse than all the other biologics- the heart ones and colon perforation risks scare me, too. Besides that, I have no idea if it is working but will update you once I am off prednisone. I go in for a colonoscopy in July and will hopefully be off prednisone for it. My nurse thinks I have a stricture in my transverse colon so we need to take a look inside. I am still having considerable pain, gas, and constipation now. She thinks the stricture is causing these issues. Still eating very low fiber diet until my scope. I was due for my second dose of Shingrix but decided against it since the first dose landed me in the hospital for a week. Definitely weigh the pros and cons before getting it if it is required by your doctor to take rinvoq. I 100000% regret getting that shot so just a heads up. My heart goes out to you. Being this sick just sucks. Hang in there.
Posted 6/1/2023 12:19 AM (GMT 0)
I was really scared of Xeljanz too for the same reasons. Two years later and I haven't had a single side effect. My boyfriend has been on it for 3.5 years and also has no side effects. My GI told me the risk profile really isn't any worse than the biologics.
Posted 6/1/2023 2:26 AM (GMT 0)
Ditto to Sara's comment above; the difference is that I take Rinvoq. By the way, you mentioned blood sugar. That is not from Rinvoq but from prednisone, which is notorious for raising blood sugar and doing all kinds of more damage. Concerning the elevated cholesterol, mine too went very high during the loading period. After one year it has normalized with 5 mg. of a statin cholesterol drug. My dr. tells me that 5 mg. is nothing. So yes, I do think that the risk profile is a bit overstated.

Very best wishes.
Posted 6/1/2023 9:12 AM (GMT 0)
Would agree with Tonito. If you've ever been on prednisone the risk of a serious problem is much higher. I've been on xeljanz over 4 years and no side effects. My cholesterol also went up a bit at the beginning but is normal now.
Posted 6/1/2023 12:06 PM (GMT 0)
There is a thread started by MajorRad on page 2 discussing Rinvog with a lot of information. So far from what I have read here, the only one that has had difficulty is Bacon Girl.

Try not to get wrapped up in reading on the internet, if we believed everything we read on it, we would all be living in a cave out of fear.
Posted 6/1/2023 4:35 PM (GMT 0)
Here's the link to the thread that Straydog mentioned -- a lot of posts in that thread. Might be a helpful read:
https://www.healingwell.com/community/default.aspx?f=38&m=4303983
Posted 6/7/2023 2:00 AM (GMT 0)
Did you decide to try it?
Posted 6/7/2023 2:21 AM (GMT 0)
I am one year on Rinvoq with no side effects whatsoever. My blood work was off from Remicade and years of Imuran but smooth sailing so far and replaces all the other drugs I was on. My bloodwork is now perfect.
Also my doctor told me that the "blackbox" warning for Rinvoq is for the entire class of drugs called JAK inhibitors, based on early trials not specifically for Rinvoq. According to my doc, there has not been a single case of bloodclots with Rinvoq. I am new to this drug, so I am as suspicious as anyone but hoping for the best.
Information for this specific drug is scarce on the internet because it's so new, but millions are taking it now, so we have in effect started a huge drug trial, if there are any big issues, we should start seeing them soon.
best to you!
Posted 6/7/2023 1:20 PM (GMT 0)
Well interesting timing. I have been on Rinvoq for 2 years with good success. I have no side effects at all. Woke up on Sunday with a sore calf. It worsened on Monday and lo and behold I have a blood clot.
I don’t think it is from the Rinvoq but I am a perfectly fit and healthy (other than the UC) individual. I am now on blood thinners for 3 months and my GI is considering if I should stay on it while I am on Rinvoq. I will push against it of course.
Posted 6/7/2023 2:53 PM (GMT 0)

Hugo18 said...
Well interesting timing. I have been on Rinvoq for 2 years with good success. I have no side effects at all. Woke up on Sunday with a sore calf. It worsened on Monday and lo and behold I have a blood clot.
I don’t think it is from the Rinvoq but I am a perfectly fit and healthy (other than the UC) individual. I am now on blood thinners for 3 months and my GI is considering if I should stay on it while I am on Rinvoq. I will push against it of course.

Oh no! Sorry to hear this. If not from the Rinvoq, what do you think the clot is from? Also how can you be on blood thinners when you have UC, won't the bleeding get out of control?
Posted 6/7/2023 3:03 PM (GMT 0)
no you can be on blood thinners with UC. i am in full remission. Clots can happen for several reasons. One may have been that i had knee surgery last year and my knee was inflamed still. Who knows.
Posted 6/7/2023 3:58 PM (GMT 0)
Sorry to hear that, Hugo. That would be scary and is still my main fear with Xeljanz. Glad you caught the signs early and got it checked out.
Posted 6/7/2023 5:52 PM (GMT 0)
the problem now is that the gastro wants me to continue the blood thinner until such time i stop using rinvoq.
i have no interest in that and will get a second opinion if this is required.
Posted 6/7/2023 6:04 PM (GMT 0)
I wouldn't want to either.
Posted 6/9/2023 10:48 AM (GMT 0)
I've been taking Rinvoq since December 2022 with the ONLY side effect being a bit of acne. NO symptoms of UC When I began Remicade back in 1997, the warnings were much the same as for Rinvoq. I THINK...lol...the drug manufactures just don't really know when they put the stuff on the market. Time shall tell the tale, but for now, for me, all is GREAT. Best of luck to you and as others have mentioned, prednisone is one of the worst offenders for side effects.
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