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Living with Psoriatic Arthritis (PsA)

Xeljanz XR - Follow me on my journey!


#1

Hello everyone! I recently got approved for Xeljanz and I will be starting it tonight. Thought it would be a good and helpful idea to record how I’m doing on it. I couldn’t find too much information regarding PsA patients while I was researching it. I will be updating weekly.

Here’s a little background about me. I was diagnosed with PsA around 10 years old so I’ve pretty much tried all of the biologics. Orencia used to be my holy grail, but its lost its effectiveness so on to the next I go. I’m also currently taking Arava. Has anyone taken Xeljanz? What has your experience been like?

This is pretty irrelevant but, during my research I found this link. It discusses how JAK inhibitors might be helpful in treating both vitiligo and alopecia which I am also diagnosed with. It will be interesting to see if I notice a change with those. Also with my psoriasis. It’s out of control at the moment.


#2

Hi there, sorry to read you have had such a rough time since childhood, it makes me wonder why I moan now, I didn’t develop any symptoms until my very early 50’s. I certainly wouldn’t have wanted this and all the other things you have had to contend with through my teens and into young adulthood. I have no experience of the drugs you mention but just wanted to say I wish you all the luck in the world that the latest drug they have started you on brings you major benefit with little or no side effects. I think you deserve a lucky break if anyone does. Look forward to hearing how you get along.


#3

1 week update

Well, this week has had some ups and downs. Had to stop Arava. Arava already made me nauseous, but with the Xeljanz, it was too much. As far as Xeljanz side effects, I’ve had 2 days out of the week where I felt great and the other 5, I was really nauseous, had no appetite and had bad headaches. (I also have a condition called gastroparesis which can cause those, so I’m not entirely sure if it’s the med or my body acting up) I’m feeling hopeful. Hoping the side effects (if it is the med) go away over time.

Prior to starting Xeljanz, I had weeping psoriasis all over my neck, behind my ears, and scalp. Within 4 days of treatment I started noticing patches clearing up! I’m truly amazed at how fast it’s been working. Still have some patches, but it’s been a drastic improvement.

As for my joint pain/swelling, I’ve also noticed quite a drastic improvement. It’s given me back some of my independence and has managed to take a lot of swelling down in my wrist. My rheum is waiting on my swelling to go down before referring me to a surgeon and I’m feeling confident she’ll agree to send me after my appointment next month :slightly_smiling_face:

Overall I’m happy with Xeljanz. Hoping the nausea and what not subsides. Will update next week!


#4

2 week update

This week went a lot better symptom wise. There was only one day where I wasn’t able to take the pill, but I don’t think it had anything to do with Xeljanz. I believe I was going through a gastroparesis flare for sure. It’s finally calmed down so all is well. I’ve also noticed I have a bit more energy lately. Prior to starting, I would easily sleep at least 10 hours a night with a nap in the afternoon. I still feel tired all the time, but not tired enough to nap.

My psoriasis hasn’t got any better, but it hasn’t got any worse either. Most of the weeping is gone. I only have one spot behind my left ear that gives me trouble due to my glasses constantly rubbing against it. I haven’t noticed much of a difference in my joint pain/swelling since my last update either. I was told Xeljanz can take up to 3 months to work (as early as 2 weeks for some!) so I’m feeling hopeful there will be more improvement to come. Will update next week!


#5

That sounds like good news, that things are moving in the right direction slowly. Keep us updated and good luck :slightly_smiling_face:


#6

Thank you! Hope you are well


#7

Week 3 update

Well, things have been pretty stagnant lately. Not much improvement since the last update, but we’ll see how these next few weeks go. My psoriasis is improving slowly but surely. Still dealing with nausea. (Thank god for zofran!) I have blood work next week and an appointment with my rheum on Sep 10th. I will most likely update after my appointment unless something happens!


#8

Good to hear the psoriasis is still showing improvement :slight_smile: hope the nausea stabilises for you and you see some more improvement soon


#9

Hi. I will be starting Xeljanz in 7 weeks…have to wait to get Stelera out of my system. I hope you are feeling better. xeljanz will be my 4 th biologic Humira, Remicade, Stelera and now Xeljanz.


#10

It’s been wonderful for me so far! My rheum was so impressed when I followed up with her a month after starting it. Also, the company itself has been a blessing. They offer co pay cards to help with the cost (my copay was $200 for a 30 day supply prior) I am still dealing with stomach issues and what not, but xeljanz has been ruled out. I have some GI conditions and they’re acting up. I hope xeljanz will be able to provide you some relief. It’s been the only biologic thats been able to take down the swelling in my wrist.


#11

Just wanted to give a quick update

Things have been going well. The nausea seems to have vanished for the most part (I have bad days) My blood work is looking great and aside from my wrist and one of my fingers that have joint damage, I’m feeling pretty great. I wake up with very little pain and as long as I don’t overexert myself, it stays that way. The swelling in my wrist has reduced enough to where I was able to schedule my surgery! It’ll be in December unless there’s a cancellation and I can get in sooner. I follow up with my rheum in a few weeks. I’m really happy with Xeljanz overall. Will update later.


#12

Hi @hylianprincess.
Thanks for all the updates on your experience with Xeljanz. (I finally got a chance to read through your discussion.) It’s always good for everyone to hear how the meds are working. I’m sure it’s very beneficial to newbies just joining with no knowledge of what to do next or what meds they can trust.

I like to talk about my experience with Enbrel. I started it 4 years and 4 months ago. I was completely shocked at how well and quickly it worked for me, and with absolutely no SEs. But it’s nice to know there are biologics in the form of a pill that work so well—maybe I’m wrong that Xeljanz is a biologic?

Sorry to hear you were diagnosed at such a young age. But, hopefully, Xeljanz will continue to be your lifesaver. Keep us posted!


#13

Thanks for checking in! That is honestly why I decided to share my experiences. I did not find too much info on how PsA patients did with xeljanz since it just got approved for PsA in Dec. 2017. And yes, it is a biologic!

I’m happy to hear Enbrel is working so well for you. Hope you are doing well. :slight_smile:


#14

It gives me hope to hear your story!
I’m n Xeljanz now for nearly 3 weeks. Wasn’t getting a lot of improvement yet and very fatigued.
I’ll hold tough, it might get better!


#15

Sorry I saw this so late! Any improvement? Hope you are well


#16

Well, it’s been awhile!

Since my last update, I’ve had a total wrist fusion surgery. Had it done on December 31st so still recovering. Had to stop xeljanz one week before the surgery and if all goes well, I can resume in 1-2 weeks as long as there’s no sign of infection. Now I have 100% confirmation that xeljanz has improved my quality of life. After 4 days of stopping it, I started getting psoriasis patches on my neck, face and scalp as well as joint pain all over. Can’t wait till I can start it up again! Hope everyone is doing well. This surgery has been a tough one


#17

Wow! That’s an intense surgery, I’m sure! Good luck with therapy post surgery once you start that in what, 4-6 weeks? It is good to have confirmation that the medication is working well for you.


#18

Thank you! And yes, if everything goes well I can get my cast off on the 30th. She actually had to move my tendons around and shave my ulna bone down so not looking forward to PT :grimacing:


#19

That’s not too bad at all! I think I had a cast on for 6 weeks after having surgery at the base of my thumb to stabilize it. Yes, OT was a challenge. And it took a few years to get full use back. In my case, the ongoing issue was the ability to do things like support something on my hand when it was flat, like a plate. But ultimately I’m much happier, and pain free. The therapy may not be as bad as you think, because, of course, you’ve been fused, and now it’s a matter of working on what has lost strength around there.


#20

Hi,

No probs, I hope you’re doing ok :slightly_smiling_face:
I’m off the Xeljanz now as it wasn’t doing anything for me and it gave me pain in my liver.
I’m back on Otezla (I respond well to that) and started with Tremfya. that is going very well so far.