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Posted 3/10/2023 7:16 PM (GMT 0)

barnsbury said...



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.


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.

Barnsbury- thanks for this post…I was soaking all this info in. Seems like you went off Rinvoq during the trial and you successfully restarted. Granted nothing is for sure. That was a huge question I had. Because i have the option to switch meds for pregnancy but if it fails I would need to try Rinvoq again and hope it works.

I’m also on 30mg since July 2022 and I’m not liking my side effects and if I stay on Rinvoq I’m hoping a lower dose will get rid of the side effects AND keep me in remission.

Loved that you posted your supplements-thanks. Out of yours I also take a multivitamin and B12. I take Reishi mushroom as a tincture or tea- it’s supposedly a great anti-inflammatory.
Posted 3/11/2023 12:27 AM (GMT 0)
Rinvoq and pregnancy:

In animal studies, this drug administered at exposures equal to or greater than approximately 1.6 and 15 times the maximum recommended human dose (MRHD), respectively, resulted in dose-related increases in skeletal malformations, an increased incidence of cardiovascular malformations, increased post implantation loss, and decreased fetal body weights. There are no controlled data in human pregnancy. It is not known whether this drug can cause fetal harm or adversely affect reproductive capacity in humans.

Source www.drugs.com
Posted 3/14/2023 3:28 PM (GMT 0)
This thread has made me feel so much better. I am completely incontinent right now and may be starting Rinvoq soon. I don’t even care what the side effects are at this point. I am so effing tired of this flare! Did you guys have to get a shingles vaccine prior to starting? My doctor said I need it before he will prescribe it but I am nervous to get it since I tend to feel worse after a vaccine and don’t wanna deal with vax side effects on top of horrendous diarrhea and accidents.
Posted 3/14/2023 3:41 PM (GMT 0)
I don't know about Rinvoq, but for Xeljanz, I did not have to get a shingles vaccine before starting. I got one after starting it because I asked for it myself and wanted it, but I was told the increase risk for shingles is very low. I didn't feel any side effects from shingrix.
Posted 3/14/2023 5:43 PM (GMT 0)
Bacon girl

Rinvoq is a miracle drug for me. I wish you the best and have high hopes it will work for you as well. I started Rinvoq June 2022 in hospital with a major flare. I received the shingles vaccine during this same hospital visit and it was given to me before starting Rinvoq. I was in such bad shape with the flare that the shingles vaccine side effects were a minor annoyance to me (sore arm, little headache?). Just do it and drink plenty of water before and after. Better than actually getting shingles.
Posted 3/14/2023 8:35 PM (GMT 0)
Hi bacon girl,
I am on Xeljanz. My doc prescribed shingrix after I started it. Xeljanz started working within days or maybe a week.
The first shingrix dose was fine for me. I even got it at the same time as the flu vaccine I think. Xeljanz was working really well and I got a little cocky haha. The second shingrix dose really knocked me out but I think GI wise I was okay. Not like the Covid vaccines, those things really mess me up.
Posted 3/14/2023 8:40 PM (GMT 0)
@Sara14 that makes me feel better!

@A.Carter I am so happy it has worked for you. I totally get it with the vaccine. Compared to the flare itself, it’s probably no big deal. Do you have any side effects besides the usual (low immune system/fatigue)?
Posted 3/14/2023 10:57 PM (GMT 0)
Bacon Girl

There are 2 kinds of shingles vaccines.
The older one was 1 dose and a live vaccine, Doc had me get it before I started on azathioprine.
The newer one is Shingrix (which is 2 doses about 2 months apart) is not a live vaccine so ok to get when on biologics. Doc wanted me to get the Shingrix even though I already had the other one. I don't remember if I had side effects so if I did they were very mild.

I hope your doc isn't planning to make you wait until you have both doses of Shingrix! You are in a severe flare and really shouldn't wait for another 2 months. Can you take prednisone? It's too bad it has so many side effects because it can work miracles to make you feel better until a new med can kick in.
Posted 3/15/2023 12:44 AM (GMT 0)
I am on xeljanz which is from the same family of drugs as rinvoq. I have not had a shingrix vaccine yet because it was unavailable in my country for a long time (the supplies were bought up by Japan and Germany). However the hospital did test my varicella antibodies and they were sky high, because i had chicken pox in my 20s, so they told me not to worry as I'm unlikely to get shingles. At some point I'll look into it again but I got distracted by other issues and vaccines (among others I've done a series of vaccines against tick borne encephalitis as that can be a problem in parts of Europe and there is no cure).
Posted 3/15/2023 1:30 AM (GMT 0)
My side effects from Rinvoq are acne-pretty bad acne on my back-entire back- it does suck but it is what it is. I also developed some sort of eczema on my hands that look like blisters and they come and go.
So these are just skin related, otherwise I feel completely healthy and can eat and go to the bathroom normally smile
My skin side effects started after I was completely tapered off prednisone so it took a couple of months to start and has been getting worse. I’m working with a dermatologist so we will see.
Posted 4/19/2023 8:19 PM (GMT 0)
A. Carter,

Let me/us know if you and your Dermatologist land on something that works.

Background:

I've also been on rinvoq as part of the study since 2018 (Hey Barnsbury, been a while, hope you are well!). My main problem has been skin inflammation / acne. Primarily on my scalp, some face and lots on my neck. It was horrible when I first tapered off of prednisone. Bad enough I had to go back on for a bit to get things mostly under control. Thankfully I haven't had to touch Prednisone in several years. In the meantime I've had some help from triamcinolone acetonide cream and also have been doing very low does Accutane (30mg once every 3 days).

Given that Accutane is coorelated with UC I'm not that excited to be on it. I did take a short course of it a long time before my UC came on, so it given it had already been in my system I figured the potential help outweighed the risks. That said I still try once a year or so to stop the Accutane to see if it's still needed. Despite my skin not being that great, it had been fairly steady, so recently I tried a 2 week break from Accutane.

That was a bad idea and I'm currently going backwards on the acne front. Getting painful cystic acne regularly instead of rarely. So I've just restarted. If you run into anything else that work for you I'd be curious what it is.
Posted 4/19/2023 8:31 PM (GMT 0)
I just also wanted to lay out what I see with my skin patterns just in case it lines up at all with other experiences.

1) Stress is a big trigger (think others have mentioned that). It almost feels like the extra inflammation that might have kicked off a flare in my guts is instead getting redirected to my skin during times of stress. When I went off Accutane, I was good for the first week, then had some major stress at work and skin started kicking off.

2) Even after an area clears I'm likely to get the same pattern again in the same spot (scalp areas are consistent focused spots even when things are under control-ish, neck is always way worse on the left side, shoulder only acts up on my left side). There's some research / belief out there that cells can sort of "remember" prior inflammation for a long time and are more prone to be trigger happy to inflame in the same spot. Sure seems like that's happening to me.

I think the 'inflammation memory' is particularly bad for me as I was on high dose Pred for a long time and only could taper off with Rinvoq. I think the combo of the following caused my initial inflammation / acne flare to be very strong (really it was insane, whole face puffy and hundreds of pimples each morning, not livable). The combo: A) some adult cystic acne off and on even prior to UC B) High dose Pred at 80mg for ~1 year C) Rinvoq itself = I'm extra prone to my skin popping back off when stress / who knows what else triggers this.

3) Not only do I see the same areas repeating but it's often in a bit of a line. Like for example a section of my neck will start with say 4 red dots roughly spaced out in a line. Then the small red dots will become much bigger red areas (cm+ in diameter). Then the middle spot where the first red dot was will very very slowly turn into a white head (usually under the skin enough it's not likely to pop, it's like a white head in waiting). Then if I'm really unlucky those white spots slowly grow into a cyst.

Anyone seeing anything kinda like this? And sorry for the ramble, just wanted to throw out what I'm seeing.
Posted 4/20/2023 1:04 AM (GMT 0)
I did not have acne from a medication and not nearly as bad as what you are describing, so this likely won't be helpful at all, but as soon as I stopped washing my face with soap or any of the face washes or acne treatment face washes, my acne went away. And I had it even as an adult. I just rinse my face with water most of the time. Occasionally, if I feel really dirty, I do use soap or my shampoo on my face now, but it's not a daily thing. I read about other people who did this online years ago and thought it sounded dumb but it worked for me. Sounds like you are dealing with something much different and worse though.
Posted 4/26/2023 4:25 PM (GMT 0)
Well, here we go again!!! I've been on Rinvoq now since December 17th. Called for my 90 day refill and was told it was denied due to the need for prior approval. I had BEEN 'prior approved' until Dec. of 2023. So, my doctor's office tried all day yesterday to get approval. This morning, I got a message from CVS Specialty pharmacy telling me that my prescription for Skyrizi had been denied and my request for Rinvoq was canceled!! SKYRIZI??!! I never HAD a prescription for such a drug. My doctor's poor nurse is trying her best to get approval from my insurance for Rinvoq. Now I have no idea what to do when my Rinvoq runs out. It would be SO nice to just get a prescription from our doctors and fill it at our pharmacy without aggravation and stress. Sadly, that won't be happening again I don't think. Just wanted to vent before I got nuts. sheesh OH, and I too have acne from Rinvoq. LOL Was told by my dermatologist that there really isn't much that can be done to get rid of it. LOL Gee....what's new?!! LOL Everyone stay well
Posted 4/26/2023 5:09 PM (GMT 0)
Geezer--Wow, how frustrating! I hope they can get it sorted out before you run out. I've been going through CVS Specialty for my Xeljanz and it's been a smooth and easy process for the most part. I can now just refill online every month and they send them to me so early that I have 4 full bottles on stock at the moment. Walgreens Alliance was horrible. I'm glad my insurance changed who I needed to go through.
Posted 4/26/2023 6:35 PM (GMT 0)
Damn! Like you need another headache right?
Posted 4/27/2023 12:16 AM (GMT 0)
Doctors nurse came through!! 'They' said I'm approved..again, for a year. What an ordeal for the doctors staff and way too much stress. CVS specialty did nothing wrong, they've been great. I don't know why all the confusion this time...it wasn't my first refill or anything. Anyway, for now, all seems ok. Fingers crossed. Be safe and stay well and thenk you for letting me vent, rant, and rave. LOL Now....where did I put that clonazepam
Posted 4/27/2023 7:02 AM (GMT 0)
Currently slowly going into remission after a month flare with Pred and I’ll be starting Rinvoq very soon so I’m really hoping this keeps me in remission long term again. Infliximab kept me in remission for 3 years before my stupid IBD team decided to take me off it due to high antibodies formation and no other plan, hence why I’m coming slowly off this flare now. Reassuring reading this thread. Seems like Rinvoq is an excellent treatment for UC patients
Posted 4/27/2023 9:30 AM (GMT 0)
Very best of luck to you Tblock. It certainly worked a miracle for me!!! It's like my ole body turned of the UC switch! NO symptoms at all now. NONE!!! It's a shame that the drug is so expensive as it certainly seems to work better than anything I've tried in the past. The ONLY negative change I've noticed is a little acne. Painful, red pimples on my face. LOL Not a lot, just one or two at the time. THAT I can live with. Life is SO good now, being able to just get out and enjoy the things I used to without the constant worry of....where's the restroom???!!! LOL Good luck to ya
Posted 4/27/2023 4:02 PM (GMT 0)
That is awesome to hear. I was in remission on entyvio for almost 9 years and started flaring a few month ago. We’re switching to rinvoq, hopefully starting this week.

Really hope this one works as well or better than entyvio did for all those years. I can put up with some pimples if it give me my life back lol 😁
Posted 4/27/2023 4:55 PM (GMT 0)

geezernow said...
Very best of luck to you Tblock. It certainly worked a miracle for me!!! It's like my ole body turned of the UC switch! NO symptoms at all now. NONE!!! It's a shame that the drug is so expensive as it certainly seems to work better than anything I've tried in the past. The ONLY negative change I've noticed is a little acne. Painful, red pimples on my face. LOL Not a lot, just one or two at the time. THAT I can live with. Life is SO good now, being able to just get out and enjoy the things I used to without the constant worry of....where's the restroom???!!! LOL Good luck to ya


Fantastic. I do tend to respond well to maintenance Medication thankfully. Azathioprine kept me in remission 3/4 years before coming off it, plus like i say the Infliximab worked wonders too. Really hope the Rinvoq works too. I agree, had 3 years solid without any bowl worries. Almost forgot i had UC
Posted 5/2/2023 2:03 PM (GMT 0)
I know this is a maintenance therapy that supposed to keep IBD sufferers into a long term remission like Biologics, but does it actually turn people into remission who are actually in a flare? Or does it work best once you are in remission already from say Pred? I’m slowly coming out of a really stubborn flare which was the fault of my IBD team taking me off infliximab. I’m still not fully in remission but I’m better than i was. I start this treatment very soon.
Posted 5/2/2023 5:41 PM (GMT 0)
Tblock: Yeah, it can help you get out of a flare. Xeljanz did for me.
Posted 5/3/2023 6:44 AM (GMT 0)
Yes, it took me out of a horrible flare. And I was steroid dependent.
Posted 5/3/2023 8:26 AM (GMT 0)
I was off prednisone when i started xeljanz and had severe inflammation in my rectum with associated awful symptoms. Xeljanz worked.

Having your symptoms controlled by prednisone is not the same as being in remission. In fact prednisone can make it harder for the body to heal.
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