Rinvoq (Upadacitinib)

Thanks for sharing! Will look forward to your updates as it is so new. Out of curiosity — how outrageously expensive is it?

I get Xeljanz for free. I bet Rinvoq is free or a $5 copay with their patient assistance program. I hope it helps you! Xeljanz has me in nearly complete remission for the past year. Once daily pill is awesome! Xeljanz took me 9 weeks to get rid of all my symptoms.

yes, all the best luck. I am on both Stelera and Rinvoq. I have no idea which one is working or they are working in combination. I don't plan to alter anything after being in remission for over a year. So far every 18 months my body overrides my meds.

Great news to hear it's working for you. Hopefully the other issues will clear up soon & you will be on the road to remission.

Please keep your updates coming.

Awesome. Happy for you.

Major Rad,

See my report on Rinvoq, which I just posted.

Congrats on your remission. I was extremely unwell with UC for so long until Upadacitinib came along. Like you, I went into a fast remission and have remained that way since 2019. I am thankful.

A word of caution though. A recent scope found dysplasia which has significantly worsened the last few months. I have been informed that it was due to the Upadacitinib reactivating a HPV infection I had from many years ago, and the immune suppressing of this drug prevented my immune system from clearing the infection (as most healthy people would with no issues).

I had warts (GW) that stubbornly refused to away, despite intensive treatment. This was an early warning sign. So, be aware of any warts, etc, that you notice. I am sure you will be fine though.

Best wishes

It was found in several places, mostly in the anal verge (severe) and extending up into the rectum and sigmoid. It is AIN3 and classed as High Grade (HPV 16). I have now had the dose of my drug dropped and I have already seen some of the warts disappearing. I am due to have laser ablation in December to remove the pre-cancerous lesions.

It is a complete nightmare and I am worried. But, at least it was picked up on a routine scope and I am now under the care of a great specialist.

There really should put this risk into the drug's patient information. As it only mentions Herpes. HPV is far more dangerous and clearly Upadacitinib (and other JAK inhibitors) create an environment for it to multiply.

I should also add I had the HPV vaccine a few years ago but as I already had the infection by then, it made zero difference.

Where was your dysplasia? How did the surgery and recovery go?

OK, well its good you only had AIN 1. I am 99% sure it was the upadacitinib that is the root cause of my AIN. I had annual scopes for most of the past 20 years and I never had dysplasia before. It was only after I started upadacitinib that the problems started. The condylomas (external) appeared. Loads of them. And even with multi treatment strategies, they would not go. Then AIN 2 got diagnosed after 2 years on upada. Now in Year 3, it progressed to AIN 3. I was never on Pred during these years....

Also, my Dr told me that he has several patients on immune suppression and all of them have complained about condylomas. As for JAK inhibitors, well, they are too new a drug for any proper research as their effect on HPV. We can only really go by personal experience I guess. In time, the link will be recognised though.

You are right the risk of anal cancer is small in the general population, but it is much greater in people with IBD/Lowered immunity/High risk HPV strains/Persistent infection. I fall into all 4 categories.

Post Edited (barnsbury) : 11/17/2022 4:37:46 AM (GMT-8)

That's weird. My doctors all said it's really rare to have this condyloma thing and I've looked all over the internet and never found anyone else who had it and IBD except you now. I even spoke to colo-rectal surgeons at Cleveland Clinic and University of Chicago (top medical centers for GI issues). I don't think your doctor knows what he is talking about. Anal cancer is still extremely, EXTREMELY low in people with IBD. Sorry, but you're spreading misinformation. My boyfriend has taken Xeljanz longer than me, has sex with me (a person with HPV), and he has never had a condyloma. So, if you want to do sample sizes of 1 or 2, there you go.

I would not drop the dose until you're 100%. It took me 9 weeks to get to zero symptoms on Xeljanz. Maybe consider asking your doctor about staying on full dose a little longer, if you want.

I did pose the question. My G.I. said unfortunately there is no data on whether 45mg taken longer is better than 30mg. It is clear however, that 30 is better than 15.

Anyway, I’m gonna stay the course and hopefully get to 100% soon