Ok, I know this may seem like a not so good move but I’ll share my logic and experience but certainly not given as advice.
I have been on Rinvoq for 2 and a half years. In the last 6 months I have felt that it may not be helping as much as I would like as I was still slowly progressing in pain and also new areas of pain. I did a 4 day prednisone blast of 25mg which really calmed things down and I felt really good. I went off of Rinvoq while on prednisone and then decided that I want to find out what my normal condition is if off of biologics, dmards and JAK inhibitors. For 3 weeks I felt exactly the same when on Rinvoq as I did when off of it. I decided that upon the first signs of anything telling me that I am losing ground, I would restart. I managed the daily flares with Celebrex or 400mg ibuprofen and really was ok…again, not much different than when on Rinvoq. No one could tell me how long my body was benefitting from Rinvoq after I discontinued and the prednisone may have been lingering. As I got into the 4th week, my scalp started to itch and a few days later my old nemesis where all this PsA started returned…psoriasis on my eye lids. So I made it to 35 days off of the meds. At the same time that the psoriasis returned, my hands started to stiffen and be painful. I’m now 10 days back on the Rinvoq and the psoriasis is pretty much gone. What did I learn? 1. I still have active PsA and lurking psoriasis. 2. Remission can be hoped for but not likely…just stay on the meds. 3. I wish I didn’t have to wait until Nov. 21 to see a new rheumatologist.
My current rheumy threw me a literature pack on Simponi and said I should let him know if I want to switch from Rinvoq. Right now I think it is better to stick with the Rinvoq and let the new rheumy decide based on my condition in November. 4. I likely have to accept that for some of us, the PsA meds improve things by sometimes 50%, maybe 70% if lucky…perhaps I am still overly optimistic wanting 95% of pre-disease life. Again, if I had a good working relationship with a rheumy, I probably wouldn’t have self experimented as I did BUT when constantly on meds, we really don’t know our current condition…now I partially know enough to stay on them. I suspect that I would have crashed badly if I prolonged my experiment. Your thoughts are always welcomed!
The science clearly says and it’s really well documented that all JAK inhibitors Rinvoq included leave the body fast. Rinvoq research itself says it leaves the body within 6 days. This is available just by a google search. It’s one of its benefits if for example you needed urgent surgery. It’s other benefit is that unlike with biologics going off and on a JAK inhibitor doesn’t grow antibodies to it, whereas doing that with a biologic runs a high risk of doing so. Whereas the biologic I’m on which is Cosentyx lasts in the body for 110 to 155 days. A mega long time. Which in turn messes up when you start your next med too as we have interactions between meds as well.
How long you might benefit from any med is another issue altogether. Remember PsA and indeed psoriasis waxes and wanes just anyway dancing to whatever tune your abnormal immune system is playing and no one can predict what that is as it’s completely irrational. And probably not that tuneful either.
I truly get the need for the experiement you decided on. Presently I’m going through a hopeful brief blip with Cosentyx (although my heart says otherwise) where weird issues are popping up at random. Others with PsA longer than I’ve had it (and that since laste 2015 for me), say this is normal PsA. But it hasn’t been my normal PsA since I started Cosentyx in November 2019. So who knows. I know for at least two and half years of three and half years of taking Cosentyx I’ve been incredibly symptom free. I’m not now. But I have been through an excessive period of work stress since last October, now resolved, but changes are still ongoing. And we all know stress feeds PsA big time.
I’m glad for you that you now know taking PsA meds is better than taking no PsA meds. It remains there is no cure as in total remission for PsA, there is only times when a med truly works for you. And there’s an awful lot of time when we spend just eons of time just bumbling along not that satisfactorily either. And always remember your ‘current condition’ is never static either. That’s a hard one to get your head around but it is true. That can change like the wind as well.
The way I look at PsA is that we must always expect the unexpected. Imagine your disease momentum is as erractic as when you let off a blown up balloon in a room. It zigs and zags all over the place with no straight path just whatsoever. That to me is the sort of level of irrationality that PsA most likely behaves like. It helps me if I think of it like that because then I become less frightened if that makes sense. Nothing much can surprise me either when I think of it like that. All that helps me cope better.
Another lesson PsA has taught me is to live in the day. If today is a good day grab it and have fun. If today is bad day rest and recuperate instead of wailing about it. And stop worrying about tomorrow because it might just as likely be a better day than not. All this doesn’t do much for long term planning but at least it makes the now more bearable.
Hey Amos,
Merl from the modsupport team here.
BIG +1 from me. This is a process I too have gone down and although not at all PSA related, I can very much relate to your processes. I’ve been put through all sorts of trials of all sorts of meds I was up, I was down, I was all over the place and my insides… just wow.
Many of these meds I had to take for a period for what they called a ‘Therapeutic Dose’ to build up in my system. Prior, the drug was in my system, only not at quantities to be considered useful or at a therapeutic level. On the other end, coming of these meds I had to slowly reduce my intake over more than a month with some, so my body became accustomed to not having the drug and then flushing it out.
I hate the damn meds. If I could manage without, I would. the reality is I need the meds. Every Dr I’ve gone to (And there has been many) has had ‘another idea’, ‘another plan’, or ‘another med’. I have found what works for me. Some dr’s don’t want to prescribe opiates and I understand why, but they don’t have any other option for me. I have EVERYTHING documented and when they start with their ‘options’, I lay it all out. From alternative treatments to alternative theories, I’ve tried them all. If they had any other option I’d give it a go, willingly.
I too got to the point where I thought, “I’ll see how I go getting off these damn things”. I gave myself a ten day wind down, coming off. I didn’t tell my wife, I thought I just do it myself. By the 5th day ‘She who must be obeyed’ could see I was struggling. I tried to put on my “Everything is fine” mask, but I should have known, she can see through my masks and I got an earbashing for that one 'Why did you do that? You know you can’t be doing that…etc, etc, etc…" I tried to explain that the meds mess with my insides, which they do but, as she put it, ‘…weighing up the benefit??? Take the damn meds…’ GRrrrr, I hate it when she’s right 
I think for those of us with a ‘questioning mind’ (Or ‘stubborn male’ mind as I’m being told over my shoulder), we try, we see how it all goes. If we find it doesn’t, at least we’ve tried, even just for ourselves. In all honesty, for many of us with rare conditions, we have to gauge that for ourselves. It’s only by trial and error that we can gauge what works and what doesn’t for ourselves IMHO. I think @Poo_therapy is correct, all we can do is ‘live in the day’. We have to manage, just for today.
Merl from the Modsupport Team
Hey @ModSupport Merl, thanks for your input, very helpful to know I’m not the only one with a wife who expresses such love with a good tongue lashing or ear boxing! There are no shortages of well meaning advice out there and I hear them on a regular basis from well meaning family and friends. I would love to go sit for two hours in a “bio-resonance chair” and walk away healed. Last week I actually hurt a friends feelings because I wouldn’t try their version of a no meat but lots of sugars and carbs diet that would absolutely work. We all live in different situations regarding the medical support that we get…ours pushed me over an edge and I just wanted to not be dependent on pills. What if…as the world goes bonkers, I can’t get them…can I cope? So I needed to find out my normal, and I did. You are right, male pride does cause the search for self remedies and desire to throw away the meds to continue but hopefully wisdom trumps pride in this case. My dad died early because he kept adjusting his dose of blood pressure medication thinking that he just found a better way. This spiked his blood pressure to the point of cognitive damage and a bad fall. My wife very recently said, “Stop being like your dad and take your pills.”
I have a question that maybe you or @Poo_therapy can answer: Why does something like Rinvoq leave ones body so quickly but it takes months to be effective when starting them?
Hi Amos, everything I read on this forum sounds so familiar. It was so hard for me to believe i had this disease in the beginning. I guess, i didn’t want to believe it. I fought going on biologics for many years. I got a bew Rheumatologist who explained things so much better. I trusted him. I went through many meds and finally found Cimzia. It’s amazing how much better I feel on this med. My Rheumatologist told me he gives this med to pregnant women. Less side effects. He was right. I was getting upper Respiratory infections everytime I would get the Simponi infusions. Methotrexate gave me extreme nausea. Otezla was the worst. It gave me suicidal ideations. I reported that drug to the FDA. I too , have learned to listen to my body. I also learned to slow down. So, after all these years it comes down to acceptance! Took me so long to accept this diagnosis. I wish you guys and gals all the best.
@Amos The reason they take so long is because they are becoming a part of your DNA or modifying your existing DNA “communication lines”
I can identify with the self management issues. After relocating to Texas, I partook in a bit of that. It didn’t turn out well. It took a while and frankly the 8 months of med free running on fumes was wonderful - until the mother of all flares took residence…
I think @tntlamb is right. ‘They say’ Rinvoq works faster for patients than say biologics but that’s only from the still limited trials they’ve run to date and it doesn’t take account of the vast number of years of patients taking it in comparison to something like humira. It’s still a new kid on the block for PsA meds.
Cosentyx is still a relatively new kid on the block too. And it’s only now there is serious research going on med doses wise as it’s believed there is potential to increase the max dose for people who weigh more than 90kg. That research is presently limited to just psoriasis patients too. So it’s real slow… Almost stupidly slow in my view too.
Rinvoq is still in the ‘here is a new med phase’ which appears to work well but hasn’t yet had all its corners knocked off so as to take your experience with it into account too. Patients I know on it are reporting a delay from what is expected as to how long it can take to work too, so you’re not alone in that.
An awful lot of how well a med actually does is down to patient expectation too. I’m a bit like you as I expect to have decent results as I too am demanding of coherent capacity. My test is that a med works well for me if I can walk my dog pain free for 3 to 5 miles. That level of capacity keeps me sane and mobile enough for me. Anything less is a fail. Oh I need to be able to sit in a chair in front of a laptop and have decent cognitive ability to do my job too. So neither my disease activity nor the meds used to treat it are allowed to mess with my cognitive abilities either.
But you know the likes of you and indeed me are pretty rare lots of the time. We as yet don’t have serious incapacitating damage. We’re not yet using wheelchairs or mobility scooters. Although with my present hip and foot issues I wouldn’t mind that sometimes. But instead I’ve a rheumy appt in a couple of weeks and I shall be my demanding self as to what capacity I require. I have a canal boat in September I need to be able to stand (as that’s how you drive the silly things) and I want a wonderful holiday! Of course whether I get that or not is another matter. But … And of course all that flies in the face of the ‘grap the day’ scenario which I also ascribe to. I shall report back after my rheumy appt in a couple of weeks.
Hey Amos,
I’m sorry to say I have no experience with these particular medications, but it seems other members do. I don’t like giving uninformed/non-experienced advice. Especially with medications.
Ohh absolutely, I was drowned in sympathy ie ‘Ohh, you poor thing…’ and good advice ie “My friend ‘John’ had something similar and he did ‘X’ and he’s fine…Have you thought of trying it…” What I needed was empathy and understanding, not anecdotal advice. I know they meant well, but 1/2 the time I wanted to say “WHAT? You think I haven’t done that already…” But instead I just smile and say something like “Ohh that’s an idea… …I might just try that…”
I think we’d all LOVE to have that ‘magic pill’, that magic potion and we "walk away healed’, but the reality for many of us is… That’s just not our reality. I call that ‘magic potion’, my ‘key’ and I’ve been searching for mine for 20, almost 30 yrs, but alas, no such luck. (like your Dad, I varied my heart med and OMG, I won’t be doing that again. That’s one I NEED to maintain.) Every once in a while, I push my limits, my body’s limits before taking the medications, but there’s always a consequence for doing so, usually in agony. I know this, so I have to weigh up the costs, (including the earbashing) vs getting the task done. It truly can be a balancing act.
A line I commonly use “Yes, Dear” 
Merl from the Modsupport Team
Thanks Merl, I always enjoy your responses. Looking on the bright side, I am thankful that I don’t have something predictable like RA…I’d get bored knowing each day where I’m going to hurt. PsA is for the adventurous of heart who love to say, “Go ahead, wreck my day.” With the knuckles of my right hand hurting, I have also avoided all hand shakes…too many “macho” men out there needing to give those finger crunching grips to impress. But that too draws attention and well meaning comments… “I used to have a bit of arthritis, have you tried Colgate or New Improved Tide or whatever?” I love being “rare” and “Special”!
Amos,
Did the Rinvoq give you stomach pain when you started? I have been on it a little over a month and doc told me to stop for a week because I was having pain just below my diaphragm. I have been off a month and went back to every other day. The stomach pain let up just a little. It could be from the terrible costochondritis I have in my ribs.
The only side effects from Rinvoq have been occasional sores sort of like acne but more painful, especially on my scalp. No GI issues at all but Rinvoq is the only prescription drug that I am on. You may be experiencing some conflict with your other meds. Remember, Rinvoq is still pretty new and its story is still be learned by the many people on it.
Hey Amos,
I don’t.
I recently (Last week) had, what I thought was, a regular annual follow up appointment with the neurosurgeon. Turns out it was anything but regular. They’d sent me for scans prior. So I sit down and he says to me ‘You’re special…’ Ohh, no, I don’t like being your sort of ‘special’. “This is rare…” Ohh, you mean ‘this is difficult’. Turns out I was right.
They tell me they want to do ANOTHER craniotomy, which involves them cutting a 4-6inch square hole in my skull, enough to get down between the 2 hemispheres of the brain and to say I’m reluctant is an understatement, a massive understatement. I’ve had one before. I DO NOT want another. The surgeon wanted a Yes/No answer at the appointment and I told him “You drop that on me today and then want an answer. You ain’t getting an answer today. I need time…” to which he agreed. But I know it’s coming and soon, and I’m dreading it.
I don’t want to be ‘rare’. I don’t want to be ‘special’. I want to be plain, old common
Merl from the Modsupport Team
Oh man Merl! No one wants that kind of special! Sorry to hear of this impending procedure, hopefully it will have great purpose and have good results. There is no point in a craniotomy just for the experience.
Well, I can tell you I certainly don’t… …Any volunteers willing to take my place???..
…I thought not. Damn it. 
Yea, I’ve already had that experience, hence me not particularly wanting the experience again and more than willing to pass it on to anybody who wants it. They have ‘Second-hand stores’, I need a ‘Second head store’ 'cos this one is faulty. It’s just this one’s too old to be under any sort of replacement warranty
Merl from the Modsupport Team