Rinvoq 5 days

[ElizabethW]

I started my Rinvoq on Wednesday. The first 3 days I was so tired I could barely get off the couch and couldn't keep my eyes open. This has improved somewhat the past couple of days. This morning some of my joints actually feel less painful. I was able to get up off the toilet without too much difficulty and no crying. Can it be? I am afraid to hope too much. I think Rinvoq might work for me. I just hope I don't start getting horrible side effects a couple of weeks in like I did with Xeljanz. I tried Simponi for 6 months which did not help much. With baricitinib, I had no side effects, but not much pain relief, although being off it for 2 weeks before starting the Rinvoq let me see how much worse the pain could get.

Anyone out there on this medication? How are you doing? I would like to hear people's experiences.

[springcross]

I'm afraid I don't have any advice but good luck with it Elizabeth, I hope it works and well for you. 🤞 x

[charisma]

No advice, sorry. It’s the next drug for me but I’m ok still, after Rituximab 1000mg infusions in February. I hope it means a good while longer with relief since it just might last years… But very sorry to hear about the side effects you are having. Let us, and more importantly your docs, know if it fails to improve. Best of luck. 🏅

[Hidden]

Hi there,

I started this medication at the beginning of September and had good results quickly so yes this can happen! I found that my fatigue was eased quickly.

However, I have just had to start again due to being unwell for 4 weeks with a virus and awful cough. I was on antibiotics so told to stop Rinvoq.

I have had no side effects and recall feeling pretty dam good before I caught something seasonal. But I did notice I battled much more with being unwell, I guess that is standard when reliant on this type of medication.

I’ve just started week 2 again so will be patient and hopefully it kicks in the same as before.

Sorry not a long time user but I was seeing good results after a month.

Hoping this is the same for you 😊

[ElizabethW in reply to Hidden]

Thank you. I hope you feel better soon and that you can avoid infections in the future.

[Knit12]

Hi Elizabeth, it’s my wonder drug. Have been on it for 10 weeks, and it is amazing. I have had 10 drugs in 2 years with horrible side effects. My inflammation rate has gone from 8 to 3 (which I am reliably informed is more like normal). I am still taking 5 mg prednisone but tapering it to every 3 days.

Energy levels are up, the only thing I’m experiencing is that I feel cold (don’t know if that’s cause I live in NE Scotland and it tends to be cold). I really hope this continues, I even had my 3rd vaccine and no effect to the Rinvoq amazing.

After the last 3 years being absolute hell, and even 12 weeks ago I needed a stick to walk, I’m back to more like me, no stick required. Not quite ready for a marathon yet but so much better, and no pain killers required.

Hope this is your wonder drug too x

[ElizabethW in reply to Knit12]

I am so glad to hear that you are doing so well. I can only imagine the horrible time you must have had with all those drugs and side effects. I have had a bit of a rough time myself the past 2 years. You are still early in your new treatment , so I hope you feel better and better and that it lasts a long time.

I am 2 weeks in now and I can feel the grip of pain and stiffness slowly easing up a bit. A little energy would be good but I am hopeful. Hearing about your experience is encouraging. Wishing you all the best.

[ElizabethW in reply to Knit12]

It's good to hear that you had your 3rd covid vaccine with no ill effect. I need to get mine. The rheumie says i need to stop the Rinvoq for at least 3 days for the shot, but I am not willing to risk losing ground in my treatment yet. I plan to do it in the next few weeks when i am a bit more established with the Rinvoq.

[Knit12 in reply to ElizabethW]

My rheumatologist told me to not take Rinvoq the day before, day of and day after the vaccine. I was fine (I dreaded it too as I had only been on it for about 3 weeks but no problem at all). If you see some of my other posts I had a difficulty after my first vaccine when baricitinib stopped working and it became impossible for me to continue with it. My rheumatologist has about a dozen on Rinvoq all who have had massive intolerance problems and she is having great results so far. It was only passed in the last few months for my health board area.

[ElizabethW in reply to Knit12]

Thank you. Be well.