Who is on or has previously been on Rinvoq for Crohn's Disease?

Posted by exitframeleft @exitframeleft, Jan 8, 2024

I've had Crohn's Disease for 36 years and I'm in the middle of a flare. I just started the 45mg loading dose of Rinvoq 3 days ago and I am concerned about side effects, so I'd love to hear feed back from others.

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I was on Rinvoq for about 6 weeks with good results until my Rheummy put a stop to it because of my recent breast cancer. Wanted me to be in remission at least 2 years. The only side effect I had was constipation which did not go away when I stopped it. My Crohn's disease has very inactive and except for LDN I take nothing for it. I do still watch what I eat.

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Hello there. I’m in RINVOQ for RA and I have had zero side effects from it. It is an amazing drug for me. Here’s hoping that you get as much relief from RINVOQ as I am getting. With a history as painful as your has to have been God knows you deserve it. Please keep us posted.

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Great question and discussion.
Also anyone been using Skyrizi for Crohn's ? and what side effects. I have been on skyrizi for about 6 months, not sure if side effects or issues of the crohn's.
joint pains, breathing a little heavier, slight rash on arms.
Thanks

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@adlttl123

Hello there. I’m in RINVOQ for RA and I have had zero side effects from it. It is an amazing drug for me. Here’s hoping that you get as much relief from RINVOQ as I am getting. With a history as painful as your has to have been God knows you deserve it. Please keep us posted.

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@adlttl123 Thank you! So far, so good

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My husband has been on Skyrizi--after the 5-6th injection he began to lose weight rapidly and also lost cognition.
Weight loss stabilized after about 7 weeks, but after the next Skyrizi dose (every 8 weeks) weight loss intensified and has not stopped.
Cognitively he has continued to decline very rapidly as well.
Dr's say Skyrizi is not to blame, but can't find anything else to blame either. Held one Skyrizi dose to see if anything improved, but neither weight loss nor cognition improved.They want to put him back on Skyrizi to help with Crohns inflammation, etc--I am still skeptical however.
My advice is to be very aware of any strange side effects and report them to both your MD and top AbbeVie (Skyrizi manufacturer) immediately. These are very new drugs and have not been in use long enough to get good info about longer-term side effects.

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@nosweat

My husband has been on Skyrizi--after the 5-6th injection he began to lose weight rapidly and also lost cognition.
Weight loss stabilized after about 7 weeks, but after the next Skyrizi dose (every 8 weeks) weight loss intensified and has not stopped.
Cognitively he has continued to decline very rapidly as well.
Dr's say Skyrizi is not to blame, but can't find anything else to blame either. Held one Skyrizi dose to see if anything improved, but neither weight loss nor cognition improved.They want to put him back on Skyrizi to help with Crohns inflammation, etc--I am still skeptical however.
My advice is to be very aware of any strange side effects and report them to both your MD and top AbbeVie (Skyrizi manufacturer) immediately. These are very new drugs and have not been in use long enough to get good info about longer-term side effects.

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@nosweat Welcome to Mayo Clinic Connect. I’m glad that you have a place to have a discussion about Skyrizi. We’re all volunteers here and they will tell you their experiences

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@becsbuddy

@nosweat Welcome to Mayo Clinic Connect. I’m glad that you have a place to have a discussion about Skyrizi. We’re all volunteers here and they will tell you their experiences

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I would love to know if any others have had similar experiences with biologic drugs.
Since they are BIG money makers for "big pharma", I 'd be very surprised if the drug companies would readily share these kinds of serious side effects with the public unless/until forced to...

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@nosweat

My husband has been on Skyrizi--after the 5-6th injection he began to lose weight rapidly and also lost cognition.
Weight loss stabilized after about 7 weeks, but after the next Skyrizi dose (every 8 weeks) weight loss intensified and has not stopped.
Cognitively he has continued to decline very rapidly as well.
Dr's say Skyrizi is not to blame, but can't find anything else to blame either. Held one Skyrizi dose to see if anything improved, but neither weight loss nor cognition improved.They want to put him back on Skyrizi to help with Crohns inflammation, etc--I am still skeptical however.
My advice is to be very aware of any strange side effects and report them to both your MD and top AbbeVie (Skyrizi manufacturer) immediately. These are very new drugs and have not been in use long enough to get good info about longer-term side effects.

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I am so sorry to hear this! I have not taken Skyrizi but I have taken
Entyvio and Remicade. I noticed Aches and pains, sometimes debilitating pain,and severe brain fog. I am so thankful That I’m off both. These are powerful drugs, and although they help some people, they are poison to others. My best to you!

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My reaction wasn't from Skyrizi but from Simponi Aria for RA. I had run out of other drug options. And I had a bad reaction of stroke level B.P. and tachycardia and severe headaches. My RA doctor thought they might have to put me in the hospital. However, they thankfully, were able to manage it without being admitted.

I had a whole cardiac work up, including a monitor for 30 days which picked up SVTs.
I was put on medication for those and then October of 2024 , I notice my pulse was 43 at my endocrinology (I am hypothyroid) apt. I began to monitor my BP and Pulse at home and noticed I was having a lot of very low pulses and so notified my internist. More workup and then had a Pacemaker implanted in January this year.

The cardiologists tell me that the Biologic did not cause my cardiac issue. But the extremely high B.P and tachycardia came right after I had taken the Biologic so I'm not convinced.

I've been very leery about biologics and it seems to me they use them too quickly, when perhaps other medication might also work. On my "My Chart" , once I took that Biologic, I was labeled a "high risk medication user"

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