So today Humira has been deemed as missing the mark for me. Rheumy said there is no reason to think that continued use will change anything. On to an oral biologic called Rinvoq. Any thoughts from my experienced friends?
Wow you’re straight onto the newer JAK inhibitors without trying the interleukin ones. I’ve never heard of it but on looking it up it seems to only talk of RA and doesn’t mention PsA at all. But it says it’s good for those for whom mext didn’t work. There are some JAK inhibitors which are specially licenced for PsA. Is there a reason your rheumy didn’t precribe one of those? And does it make any difference?
JAK inhibitors have the great advantage of being taken daily by tablet plus they clear from your system if needs be much faster consequently. They apparently work faster too.
I truly hope this one really likes you @Amos and works properly for you too. It’s time you caught something of break right now.
There is some newer research you can see at
https://creakyjoints.org/treatment/upadacitinib-rinvoq-effective-for-psoriatic-arthritis/
It sounds really very promising, and fast-acting too. Though it hasn’t been around for long, I can see the rationale from your Rheumy.
So hope if works for you! And quickly 
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My rheumy seems eager to get something working ASAP. He has prescribed Rinvoq with great success and liked that it is very versatile. If one has a cold or flu, just stop fr a few days and then go back on. The same for anticipated surgery etc. While the paper work is getting shuffled he wants me in his office in a few days so he can get me going on a “sample starter kit” of Rinvoq. But said I must get the shingles vaccine before I see him. He said he was part of a panel involved in the approval of its use for PsA. As per usual, I am a bit concerned since there are no long term side effect experience available…but feel lousy enough to just trust his advice and go for it. I spoke very briefly with the pharmacist that distribute for Abbvie and he was very positive about what he has seen. Looking back on my health journal, my first doctor appointment was in 2017 when I was initially treated for PMR with 10 day high doses of prednisone. Those are the last days I felt really well. I think Rinvoq is more expensive than Humira but thankfully still covered.
All this is happening based on a few phone calls, I hope I’m doing the right thing. I prefer evidence based prescribing like scans and exams etc but Covid has messed that up.
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I think your health journal proves the necessity though. And I’m delighted it’s one your rheumy has got approved for PsA. And it’s bound to be more expensive however the fact it’s by tablets should in theory make all these types cheaper to produce though. And I’m pretty sure you’re doing the right thing. Remember if it doesn’t suit you for whatever reason, it gets out of your system pretty fast indeed. That’s certainly a positive. Best of luck @Amos.
Thanks all! There is a genuine care that comes from those who know this journey that is hard to find elsewhere.
It’s 3 am in my part of Canada and I’m up again with pain and side effects from the shingles vaccine. The vaccine is amplifying everything and throwing in a headache. I was warned that this might happen…apparently the second shingles jab is worse. Hopefully the right thing in preparing for the Rinvoq. I wonder if @tntlamb has anything to share regarding Rinvoq?
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From my experience with the double shingles vaccine, it really amplifies the PsA aches. I was absolutely miserable with headache, eye pain and deep joint pain but 36 hours and it’s all lifted leaving only a sore shoulder and the usual issues. But I guess it’s a good sign that my body recognized the vaccine and kicked in to produce antibodies. My rheumy was surprised that I didn’t already have the jab and sees it as one of the more important vaccines for us to get.
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an article just came up in Italy re new effective medications especially for psa and not ra, as apparently most are or were. The one you mentioned is probably amongst them, good for you
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'I’m also interested in Rinvoq experiences. Thanks for posting. Hope it works well for you.
Saw the rheumy assistant today (happens to be his dr brother) He said that Rinvoq has huge potential and is fast becoming a favorite for many reasons. There is good reason to believe that it could give over ten years of effective treatment without need for a change. Compared to Xeljanz, Rinvoq is much “cleaner, smoother” at what needs to be done. He said, “Think Mercedes or Ford…they might both get you there but one gives a superb journey”. We’ll see.
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Hi Amos,
I’m interested to hear how it works for you. I’ve been on most and eventually they stop working. Embrel made me so bad my husband and I were looking at handicap accessible homes. Humira worked for a little over a year, then slowly gave out, Cosentyx is starting to fail after a year even though my rheumy doubled the shots about 5 months ago. It is disappointing but at least they keep coming up with more options to try. I’m blessed with a great rheumatologist that explains each new option and her reasons to try one over the other given my whole medical picture.
Good luck, we are all pulling for you!
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Well, you have had quite a journey with the meds, how long have you had PsA and how has it manifested itself? Thanks for your reply.
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Hi Amos,
I started with weak sore arms 20 years ago. I had just finished 6 years of pregnancy or nursing babies and was starting to reclaim my body. At first my husband and I noticed the pain and weakness was related to my hormones. Big surprise after all those years. My doctor did tests and was concerned I might have lupus and sent me to my first rheumatologist. He was a jerk laughing at my doctor and I, filling bags with samples and sending me on my way. The next rheumy couldn’t figure it out and when she saw a bruise when giving me a steroid shot told me I needed a marriage counselor not a rheumatologist. My husband is my greatest advocate and would never hurt me but I guess she didn’t think maybe I fell often because I was not stable on my feet or have bruises from being on prednisone and Celebrex for years. Go figure. It took 6 years and 4 rheumys to find the right one and understand I had PsA and it wasn’t in my head. After 20 years with it I can handle the flares but still forget when I get the twinges to start Methylprednisolone in time. But my doctor is great and listens to me, often finding swelling I was not aware of. I get used to the little pains and let them go but she catches them. The PsA rotates through my fingers, elbows, shoulders, hips, tailbone and feet. It is a process that works its way out eventually. The skin issues aren’t too bad and didn’t start until about 10 years after the joint pain. Weird. We are all on a journey and just need to keep plugging away and sometimes cut ourselves some slack. Good luck to you. Sorry this is so long.
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Not too long at all and it is the various life journeys that are shared that help many of us know that they are not alone with all the weirdness this PsA does. It is impossible to explain to people that the terrible foot pain at 7 am is knee pain or both at 3 pm but I’m rubbing my finger joint in the evening. It never ceases to amaze me how the pain rotates so randomly! Maybe we have enthesitis to some degree at all joints and each is ready like a sprinter at the blocks waiting for the gun to go off? It is encouraging that there are likely more new meds around the corner even when we think we have tried them all. The PsA pioneers like yourself bring so much experience and information to this sight and relative “newbies” like me! Press on!
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Thank you Amos. Some times it feels as though we are swimming in mud but we eventually reach the shore. One way or another.
Take care.
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A new adventure today! The Abbvie rep called and got all my particulars and in half an hour sent me an email stating that Rinvoq IS NOT on the approved for coverage list yet for Psa, only RA. So I’m on hold with Humira cancelled and now waiting for things to sort out. Thing is my rheumy has patients on it for PsA. Oh well…things won’t happen on the weekend! I’ll have to have extra trust in my Mtx…its all I’ve got right now. (and the two more auto inject pens of Humira that I’m to throw in the sharp bin)
Hopefully your Rheumy can sort them out on it. One of the decent things about the NHS in the UK is that rheumies can only prescribe what the funding arm of the NHS has already approved. And thankfully they do approve most things eventually.
Oh no Amos, I’m sorry to hear that! I hope it gets sorted out as quickly as possible for you.
Here is the latest update that has left me just a bit more confused!
I just spoke to my rheumy and he said that he calls my condition “A Rheumatoid Variant with Psoriasis” because Psoriatic Arthritis is a convenient simple term that doesn’t really fit all things as well as it sounds. He prefers, “Autoimmune Inflammatory Disease”. Because he classed it as a sub variant of rheumatoid, Abbvie has just approved me for the Rinvoq and I start tomorrow. Rheumy is very optimistic about what Rinvoq will do for me. So, Good News Monday even though it is -33C here!
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Join the club Amos. My Rheumy did pretty much exactly the same thing. More drugs approved on the RA list.
In my case, it was even more confusing, because he thought it was “spectrum” disease sitting somewhere on the spectrum from PsA to Crohns (turns out he was right). Meanwhile, the “official” diagnosis was seronegative RA 