1. < Polymyalgia Rheumatica (PMR)

Rinvoq for PMR and GCA - What's your experience?

Posted by deniseinca @deniseinca, Jul 15, 2022

Hey looking for anyone's experience with Rinvoq (upadacitinib)
Failed on so may meds for my PMR and GCA, including a previous biological and now this is my only option, side effects sound a little scary but sometimes it helps to hear other peoples experience.
Thanks in advance

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 15, 2022

Hi @deniseinca, We added to your discussion title so that hopefully members with experience can share with you. @valb68 mentioned starting on Rinvoq in another discussion and may have some thoughts or experience to share with you.

Has your doctor or rheumatologist suggested trying Rinvoq for treatment?

REPLY
2 replies
deniseinca | @deniseinca | Jul 16, 2022
In reply to @johnbishop "Hi @deniseinca, We added to your discussion title so that hopefully members with experience can share..." + (show)
@johnbishop

Hi @deniseinca, We added to your discussion title so that hopefully members with experience can share with you. @valb68 mentioned starting on Rinvoq in another discussion and may have some thoughts or experience to share with you.

Has your doctor or rheumatologist suggested trying Rinvoq for treatment?

Jump to this post

Thank you! Yes my doctor has prescribed i am awaiting approval process as it is off label prescribing,

REPLY
pickle7 | @pickle7 | Jul 16, 2022

I don’t have experience with Rinvoq; I do give myself Actemra injections for GCA. I’ve been taking this medication for 1 1/2 years. My blood results are perfect, no sign of GCA inflammatory markers. Maybe you might have success with Actemra.

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2 replies
Linda Moross | @lmoross | Jul 16, 2022
In reply to @pickle7 "I don’t have experience with Rinvoq; I do give myself Actemra injections for GCA. I’ve been..." + (show)
@pickle7

I don’t have experience with Rinvoq; I do give myself Actemra injections for GCA. I’ve been taking this medication for 1 1/2 years. My blood results are perfect, no sign of GCA inflammatory markers. Maybe you might have success with Actemra.

Jump to this post

I am starting Actemra treatment. I have had one injection and my next this upcoming week. I have heard it takes 2-3 months to get results. How long did it take for you?
Thank you!

REPLY
1 reply
valb68 | @valb68 | Jul 16, 2022
In reply to @johnbishop "Hi @deniseinca, We added to your discussion title so that hopefully members with experience can share..." + (show)
@johnbishop

Hi @deniseinca, We added to your discussion title so that hopefully members with experience can share with you. @valb68 mentioned starting on Rinvoq in another discussion and may have some thoughts or experience to share with you.

Has your doctor or rheumatologist suggested trying Rinvoq for treatment?

Jump to this post

Unfortunately I was never able to start Rinvoq, as I was found to have breast cancer . I wish you luck with it; it has helped many people.

REPLY
pickle7 | @pickle7 | Jul 16, 2022
In reply to @lmoross "I am starting Actemra treatment. I have had one injection and my next this upcoming week...." + (show)
@lmoross

I am starting Actemra treatment. I have had one injection and my next this upcoming week. I have heard it takes 2-3 months to get results. How long did it take for you?
Thank you!

Jump to this post

I initially, I was taking prednisone along with the Actemra. I slowly tapered (for 6 months) off the prednisone. My blood work was and is perfect and I have not had any side effects from the Actemra. No more prednisone!!!

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deniseinca | @deniseinca | Jul 16, 2022
In reply to @pickle7 "I don’t have experience with Rinvoq; I do give myself Actemra injections for GCA. I’ve been..." + (show)
@pickle7

I don’t have experience with Rinvoq; I do give myself Actemra injections for GCA. I’ve been taking this medication for 1 1/2 years. My blood results are perfect, no sign of GCA inflammatory markers. Maybe you might have success with Actemra.

Jump to this post

I unfortunately developed diverticulitis following my third actemra injection it was so disappointing as i felt great with that biological.

REPLY
1 reply
pickle7 | @pickle7 | Jul 16, 2022
In reply to @deniseinca "I unfortunately developed diverticulitis following my third actemra injection it was so disappointing as i felt..." + (show)
@deniseinca

I unfortunately developed diverticulitis following my third actemra injection it was so disappointing as i felt great with that biological.

Jump to this post

I’m so sorry.

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suetex | @suetex | Sep 22, 2023

The fates have conspired for me to try this. I am taking Rinvoq for Crohn's and RA and also have Sjogren's neuropathy and had a flare of my PMR. Just started the Rinvoq and it does seem to moderate the PMR pain. (Pretty bad in my legs and stiffness.) Waiting for the build up pf blood levels before I say "Hooray".

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nancy334 | @nancy334 | Oct 9, 2023

I’m waiting to try my first go round with Actemra …thanks for sharing yr experience

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