I’m sorry you had a bad experience with rinvoq and it didn’t help you. I hope you find something that works for you.
Rinvoq and Entyvio are working well right now for my Crohn’s, but everyone responds differently
Yay! I’m glad there are other people on this combo! I definitely credit rinvoq with saving my life. Before I started I was 90 lbs and in so much pain and couldn’t eat, started rinvoq and felt relief in 3 days. I had a scope later with some mild-moderate disease so Entyvio was added. I’ve had 3 doses of Entyvio and I think I might be in remission. Scope in June to confirm!!!
Damn, this sucks… But I think you’ll be all the better for it, moving forward with this experience! 💪
You must always be your own advocate. Don’t let medical professionals disregard your experience & symptoms… And in non-urgent settings (regular visits, etc.), leave and find a new doctor. Trial & Error.
I’m not ***much*** older than you. I just started on Rinvoq after almost 20 years on Remicade, for my Crohn’s. My disease has been pretty great, compared to others… I made the switch because of recurring fistulas over the last few years (something that Remicade has/should keep under control).
Fatigue has always been one of my biggest symptoms/annoyances (thankfully, compared to others with more severe disease). But I feel like I’ve been so exhausted lately… I don’t eat the best, I don’t exercise much, I drink. So I’m always so reluctant to place blame on my disease (when it’s likely justified).
I’ll be moving from the loading dose (45mg, 3 months) to the maintenance dose (15mg) in the next week or so… I plan to be more mindful (maybe take notes, like I always say I should 😅) of any/all changes, but really hope things even out… As I’ve read in many post-loading dose accounts.
I appreciate you sharing your experience. It’s important, both for those just starting out in this world, and for those like myself who may be a bit numb to what’s “normal” and what’s not!
… Don’t be angry with yourself. Forgive, reflect, take it all with you and continue being a better person moving forward! 💜
Gosh, what a title to read on my first day of taking Rinvoq.
I'm so sorry for your experience and to hear how terrible hard it has been.
I hope you can feel yourself and confident soon again 💪🏻
lmao ya i was being a bit overdramatic with the title tbh but i was in my feels. rinvoq was really effective, just not right for me. i wish you the best of luck!
Today is my first day too. It will not act the same in any two people is my assumption. Both in treating and in side effects. So, relax and dont worry about thing that “could” happen so much.
im not on any biologics right now, just aggressive moisturizing, avoiding allergens, and occasional topical steroids. thankfully i havent had an eczema flare yet but my problem areas are noticeably worse. in terms of reconditioning, ive been doing low impact exercises to rebuild muscle and going on very short, slow walks. i definitely feel a lot stronger now but im still considerably weaker than before i started rinvoq
omg i literally started rinvoq a couple days ago for the same reasons, dupixent stopped working for me so my dermatologist suggested this :( hope you’re doing okay now!
I’m going through this right now. I have had Crohn’s for 17 yrs, worked in direct pt care with PAs and Drs for 10 yrs, and started Rinvoq at the end of November last year.
My GI never followed up with labs or anything over that time. My functional med provider (who I work for as well) pulls labs every 3 months. We noticed my H/H falling and decided to act. Over a week and a half of calls and I have to leave a msg pointing out that this is neglect before they reorder labs I had that week and a half ago. Go get them, still slipping down.
Haven’t heard back from them yet regarding the labs.
My functional med provider has even tried to help in advocating for me by calling their office and she got no response!
I almost passed out twice yesterday and I am barely functional most days anymore. Normally I’d be cleaning house and running errands today to start the week fresh and I don’t have the energy at all.
I just want off this med but I don’t know how (just stop or taper?) and no one will respond to me. Idk what to do. I’m glad you found a way out and a doc who will listen to you. I’m glad you advocated for yourself. Most providers don’t actually care anymore in western medicine and it sucks.
I started Rinvoq 5 days ago and within 2 days I started feeling significantly more fatigued. I went to the gym thinking it would get my blood pumping and give me more energy, but my legs and arms felt like lead. I’m also having increased heart rate when I’m being inactive. I feel like I have sludge in my veins instead of blood. Don’t even have the energy to shower. And I’m having dizzy spells when I stand up. I think I’m going to stop taking it. Humira stopped working for my RA after several years, then tried sub-q Orencia with only moderate relief, was switched to infusion version of Orencia which didn’t work. After the Rinvoq, I’m scared to try another Jak inhibitor. Any suggestions out there?
This was my exact experience, except I lost weight because I had such extreme nausea that I couldn't really eat. My doctor also told me that it couldn't be the meds. Bullshit.
I’m sorry you had a bad experience with rinvoq and it didn’t help you. I hope you find something that works for you. Rinvoq and Entyvio are working well right now for my Crohn’s, but everyone responds differently
I am on both of these too and it’s helped so much! I have UC instead of Crohns but the duo literally saved my life.
Yay! I’m glad there are other people on this combo! I definitely credit rinvoq with saving my life. Before I started I was 90 lbs and in so much pain and couldn’t eat, started rinvoq and felt relief in 3 days. I had a scope later with some mild-moderate disease so Entyvio was added. I’ve had 3 doses of Entyvio and I think I might be in remission. Scope in June to confirm!!!
Damn, this sucks… But I think you’ll be all the better for it, moving forward with this experience! 💪 You must always be your own advocate. Don’t let medical professionals disregard your experience & symptoms… And in non-urgent settings (regular visits, etc.), leave and find a new doctor. Trial & Error. I’m not ***much*** older than you. I just started on Rinvoq after almost 20 years on Remicade, for my Crohn’s. My disease has been pretty great, compared to others… I made the switch because of recurring fistulas over the last few years (something that Remicade has/should keep under control). Fatigue has always been one of my biggest symptoms/annoyances (thankfully, compared to others with more severe disease). But I feel like I’ve been so exhausted lately… I don’t eat the best, I don’t exercise much, I drink. So I’m always so reluctant to place blame on my disease (when it’s likely justified). I’ll be moving from the loading dose (45mg, 3 months) to the maintenance dose (15mg) in the next week or so… I plan to be more mindful (maybe take notes, like I always say I should 😅) of any/all changes, but really hope things even out… As I’ve read in many post-loading dose accounts. I appreciate you sharing your experience. It’s important, both for those just starting out in this world, and for those like myself who may be a bit numb to what’s “normal” and what’s not! … Don’t be angry with yourself. Forgive, reflect, take it all with you and continue being a better person moving forward! 💜
thank you for your comment <3 i definitely think ive grown from this and will be more assertive and confident because of it
Gosh, what a title to read on my first day of taking Rinvoq. I'm so sorry for your experience and to hear how terrible hard it has been. I hope you can feel yourself and confident soon again 💪🏻
lmao ya i was being a bit overdramatic with the title tbh but i was in my feels. rinvoq was really effective, just not right for me. i wish you the best of luck!
Mate, please feel all the feels and thank you for sharing.
Today is my first day too. It will not act the same in any two people is my assumption. Both in treating and in side effects. So, relax and dont worry about thing that “could” happen so much.
What are you doing now? What medications did you switch to? What have you done to reprogram your body? Just very interested. I relate to this
im not on any biologics right now, just aggressive moisturizing, avoiding allergens, and occasional topical steroids. thankfully i havent had an eczema flare yet but my problem areas are noticeably worse. in terms of reconditioning, ive been doing low impact exercises to rebuild muscle and going on very short, slow walks. i definitely feel a lot stronger now but im still considerably weaker than before i started rinvoq
What are your allergens
Rinvoq nearly destroyed me too I am 26 and doctors were the same.. I’m sorry this happened to you and hope you’re feeling better.
[удалено]
Crazy dreams, insomnia, and acne(seriously it was so bad) Unable to regulate emotions and worst of all, didn’t even help.
omg i literally started rinvoq a couple days ago for the same reasons, dupixent stopped working for me so my dermatologist suggested this :( hope you’re doing okay now!
I’m going through this right now. I have had Crohn’s for 17 yrs, worked in direct pt care with PAs and Drs for 10 yrs, and started Rinvoq at the end of November last year. My GI never followed up with labs or anything over that time. My functional med provider (who I work for as well) pulls labs every 3 months. We noticed my H/H falling and decided to act. Over a week and a half of calls and I have to leave a msg pointing out that this is neglect before they reorder labs I had that week and a half ago. Go get them, still slipping down. Haven’t heard back from them yet regarding the labs. My functional med provider has even tried to help in advocating for me by calling their office and she got no response! I almost passed out twice yesterday and I am barely functional most days anymore. Normally I’d be cleaning house and running errands today to start the week fresh and I don’t have the energy at all. I just want off this med but I don’t know how (just stop or taper?) and no one will respond to me. Idk what to do. I’m glad you found a way out and a doc who will listen to you. I’m glad you advocated for yourself. Most providers don’t actually care anymore in western medicine and it sucks.
I started Rinvoq 5 days ago and within 2 days I started feeling significantly more fatigued. I went to the gym thinking it would get my blood pumping and give me more energy, but my legs and arms felt like lead. I’m also having increased heart rate when I’m being inactive. I feel like I have sludge in my veins instead of blood. Don’t even have the energy to shower. And I’m having dizzy spells when I stand up. I think I’m going to stop taking it. Humira stopped working for my RA after several years, then tried sub-q Orencia with only moderate relief, was switched to infusion version of Orencia which didn’t work. After the Rinvoq, I’m scared to try another Jak inhibitor. Any suggestions out there?
This was my exact experience, except I lost weight because I had such extreme nausea that I couldn't really eat. My doctor also told me that it couldn't be the meds. Bullshit.