Rinvoq (Upadacitinib)

So far so good. I feel like I am in clinical remission now, with the help of the rectal Tacrolimus (1.5mg at night). Going to stIll try and come off of that eventually, but more slowly this time (ie months rather than weeks).

Hey bansbury (and others!) I have previously read through this thread as I started Rinvoq June 2022.
This morning I was trying to find this thread again because some of the side effects mentioned are possibly now appearing for me and I’m a bit worried.
I’m getting small painful wart like bumps on my fingers. But they disappear after a few days so not warts. Started with 1-2. They go away. Then I get a batch of more and they go away. Today I have 7- some appeared before my eyes. But concerned they are an early warning sign for something. Sometimes I just get a blotchy red rash on my hands.
My other side effects are acne and/or folliculitis on face/neck/arms/chest/entire back, it’s gotten to the point where I’m socially uncomfortable. Muscle soreness that I think I’ve noticed worsens when I don’t drink enough water. Lack of good hydration actually seems to worsen all my symptoms. My worry is from how RAPIDLY these side effects are progressing. Where will I be a month from now?
When I was on remicade lots my side effects were skin related too…bad dandruff around my hairline that came off in chunks, sometimes leaving red or small amounts of blood-I thought is was Psoriasis. Also some other symptoms but will not get into it. But I came off remicade shortly after symptoms got bad and all symptoms went away.
Anywho, I hope you continue to update this thread as you are paving the path of the unknowns of Rinvoq. I will express my concerns to my doctor, but they will surely be brushed aside with the response of “what is worse-these minor symptoms or flaring” which is agreeable, but side effects always scare me.

Hi A Carter

Sorry to hear of your sides on the drug. It does appear that the sides are mostly minor, so I would try not worry too much about it. I am in remission, and I would much rather have the sides than be housebound and flaring and on Pred. I also have some acne from this drug and increased cholesterol.

That said, we still need to remain cautious. I am taking huge amounts of supplements and immune system boosters to keep the genital warts away, and thankfully they have stayed away. But, I know they could return at any time. I have had surgery to remove the first part of the anal dysplasia in December. And I will have another 3 surgeries in the next few months.

Hi Dandelion77
A couple months on Rinvoq and having “instant” recovery- also recently finished an 8 week taper off prednisone from 40mg- I remember messaging my doctor in panic because I thought I was having flare symptoms return. My doctor told me not to worry and said prednisone withdraw can have these symptoms. My symptoms were ear ringing & baaad joint pain (these are red flags for me and prelude my flares).

I think your doctor made a good call as well upping the prednisone. If the prednisone can keep the inflammation at bay while your colon heals enough then I’ll be hopeful with you that Rinvoq will be enough. That’s just my thinking -I’m no doctor

Someone in a post a started-asking if anyone had restarted Rinvoq- someone had after having to stop for a month for insurance reasons, and they believed they had to start again at the loading dose.

Barnsbury- thank you for responding back. I appreciate it. Best of luck with the upcoming surgeries. I go down the rabbit hole researching supplements sometimes. There are SO many and everyone has their own “miracle” cocktail they claim works. I’ll look around here for a good UC/supplements thread or info page. My friends and family probably consider me annoyingly healthy-but honestly I’m just terrified to trigger my UC. I would love to dig into what you and others are supplementing with.

Dandelion77 said...
Thanks for your perspective and encouragement, A. Carter! I too am hopeful the increase in pred from 5 mg back up to 20 mg will nip the inflammation in the bud (maybe butt is more appropriate haha) for Rinvoq to work it's magic. Fingers crossed!

Wrote my GI yesterday to see if she's had any patients taking loading dose beyond 8 week mark, or returned to it when maintenance dose wasn't doing enough. Awaiting response, but I suspect the answer will be no.

Again, well wishes to all!

Dandelion. Sorry to hear of your increase in symptoms. I think I have more experience with Rinvoq than anyone else on this forum. I was the first person to join the trial in the UK, and have been on the drug since 2018. It has been a godsend for me. This drug had to work or I would be going down the road of colectomy. Thankfully, I went into immediate remission and have stayed there mostly.

My journey is a bit complicated as I was on placebo controlled arm of the trial for quite a few months but went to open Label after I lost response (most likely because I was re-randomised into placebo in Phase 2). Like you, I was steroid dependent for many years and as I tapered off the Pred, my UC got worse, despite the Rinvoq. I was on 15mg and my Rinvoq dose was upped to 30mg daily. And my symptoms immediately went away. So, It looks like I needed the higher dose to get over the steroid withdrawal. But, I should have been moved back down to 15mg after that but they kept me on 30mg and that was the reason I got the warts. I know that now, as since I have been moved back down to 15mg, my warts have gone away. So, we need to be careful.

Secondly, I would strongly suggest you move to Hydrocortisone (the equivalent dose) and off Pred. I did this and it was a MASSIVE help in me getting off steroids. I was under the care of a Endocrinologist at my hospital who told me that it is so much easier to taper off Hydrocortisone than Pred, as the HC mimics the body natural steroid rhythm much more closely than Pred. It has a shorter half life compared to Pred. It forces your body to start creating its own steroid which doesnt happen so easily on Pred. So please look into making this change.

Hope this helps.

A Carter - I am on a host of supplements for the warts - Folate, Vit B12 Methylcobalamin. Shiitake Mushrooms. Multivitamin, Oregano Oil, Green Tea supplements, Artichoke Leaves, Lycopene.

Thank you for sharing your thoughts and experiences, Barnsbury. Invaluable to have your insight with longterm experience on Rinvoq.

I have heard of folks transition to hydrocortisone when pred taper becomes challenging, but not very often. My GI has not suggested this approach so I'll be curious see what her take is. It's certainly proved to be a source of frustration and difficulty to navigate but Rinvioq has been a bit of light at the end of the UC tunnel. Just hopeful I can reach a point of healing to get away from steroid use all together!

Ah yes, thank you for clarifying that barnsbury. I may explore having my GI refer me to an Endocrinologist if tapering from prednisone continues to be a challenge. I went back up to 20 mg (from 5 gm) on Jan. 7th and things have stabilized. It's a relief but I also recognize it as a kind of bandaid. The question remains if Rinvoq alone can manage my stubborn UC without steroids. Trying to be patient with the process, but the see-saw can be oh so frustrating!

Grateful for this forum

You can actually return to the 45 mg. induction strength if you flare at 30mg. This is more effective and safe than using prednisone either oral or rectal. That is the point of the poster I pasted above. So, I would ask your doctor if you can return to 45 mg. I am pasting below another study that showed that people who failed to reach remission at 45 mg. in the first 8 weeks were continued in that dose a little longer and many then achieved remission. It's right under Table 3 of the article. Hope this is helpful.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9211104/

Good to know that, Sara. I am hopeful this can be a possible option for us folks taking Rinvoq. My GI said this is not something she's done with any patients yet and seemed keen on following a very slow pred taper schedule as a first choice of action. I so badly want off pred but am willing to give the taper one last whirl before I push the idea again of returning to Rinvoq loading dose. Fortunately, the increase from 5 - 20 mg pred has me in a much better place... now its a matter of if the pred can give my system the time it needs to heal without flare returning after tapering. Patience is the mantra!

Hi all, I started Rinvoq November 8th of 2022. I used to post on here quite a bit, but I had quite a health detour that took over my life as I had brain surgery 9.21 to remove an almost 1 inch tumor in my 4th ventricle. Thankfully I was pretty much UC symptom free at the time on Stelara, so did not have to deal with flaring and recovery from that at the same time. Last summer I had a month or two where I was having almost daily accidents, but I gained a couple of lbs, and my blood work looked good for me. After years of flaring on and off while on meds, I felt it was a mild flare. My GI insisted on a scope, as it had been several years. It took a while to get scheduled because originally the facility denied my procedure because apparently there is a tier system for what other health issues you have, and they were not equipped to deal with my secondary adrenal insufficiency. (long term steroid use, made worse by brain tumor that applied pressure to my hypothalmus) Anyways, we finally got me booked in at the hospital. I was surprised to hear I had moderate to severe disease activity halfway across my transverse colon. My GI gave me 6 weeks worth of Rinvoq 45 mg samples to get me started while they worked on insurance. They ended up giving me two more weeks of samples because they couldn't do just two weeks of 45 mg with my insurance. Insurance approved me to continue on 15 mg. I am doing well on it. It fairly quickly made me quit having more than the occasional odd accident. I was on Xeljance previously, and it only worked for about 5 months, so we shall see. I have noticed a bit of oily skin, and a little bit of acne. I occasionally get cold sores, but while on 45 mg I had to take the antiviral medication for them to go away, which I have never needed before. I am on fludrocortisone for extremely low blood pressure post brain surgery. I had my blood pressure go high after being on Rinvoq for close to the 8 weeks loading dose. I am not sure how much was Rinvoq vs stress of moving vs my brain adjusting again post surgery. I am now on half the fludrocortisone I was on before, but also am on 15 mg of Rinvoq instead of 45. I go next week to get labs done, so we shall see if it has caused other issues such as cholesterol elevation. I did experience crushing fatigue a couple of weeks in. I joined a fb Rinvoq group and learned there that people had less fatigue if they switched to night time. I did that, but what seemed to break me out of it was actually skipping 1 dose after switching. Maybe it was the combo? Dealing with fatigue again, and reflux issues that are making me lose my appetite. Sometimes sign of pre flare for me, but I also am on week two of anti seizure medication that can cause fatigue. (Thank you brain surgery) On the fb group, the main thing mentioned that hasn't been on this thread is heart issues in people over 50. I see a dermatologist yearly, and she just moved me to every 6 months. No skin cancer, but she did that after freezing off a second sunspot last visit. Said I was more at risk now.

My last labs were good on the cholesterol front.

Good news on the labs, Spring! Hope your recovery from brain surgery is going well. That sounds like it was pretty scary!

Leaher89 said...
Both Entyvio and Remicade didn’t work for me, so I am about to try Rinvoq and am hoping for remission in order to be able to get pregnant again…..My daughter is currently 20 months and it’s been so insanely difficult going through this flareup while trying to be a good stay at home parent!

Hi Leaher89,
I just wanted to mention that Rinvoq is not a safe option for pregnancy. Make sure you and your GI/health team discuss this. Although…I just had this talk with my GI as I am wanting to get pregnant as well but am out of many options. My GI suggested that dropping to a lower dose of Rinvoq (15mg?-im currently on 30mg as maintenance) was an option for pregnancy but it would carry risks. It’s proven in animal studies to cause birth defects-don’t know at what doses. Either way I personally don’t feel comfortable getting pregnant while taking Rinvoq.
My other options are trying to switch to Stelara (my last drug option at this time) while I’m in remission and hope it works. Or surrogate. Adoption…
I’m just stuck being indecisive for now.

I feel your pain of flaring as a new parent. The birth of my kiddo triggered UC for me and I also had to navigate this new disease and a newborn. You are doing great

I stopped recieving alerts that this thread was still active, bummer because this is really good info here people. I’ll be sure to keep checking in. I had no idea Rinvoq doses could be played around with so much. Lot of you have had experiences of lowering and upping doses to fit your needs-amazing. I’m at least hoping to ask my GI to lower my Rinvoq dose to get rid of side effects of painful cystic acne and eczema like blisters on my hands. I’m on 30mg Rinvoq because I’m fairly severe.