For the last 2 months, when I’m about a week away from my next Taltz injection, (every 28 days) I start to flare. Increased pain and morning stiffness that takes way longer to fade. Do some biologics run out of steam before the next injection?
It’s pretty standard. I used to feel the same on Cosentyx. I knew when I was in week 4 always.
Thanks. I guess there advantages to a daily med like Rinvoq. The dosage is always the same. How are you @Poo_therapy? Are you pretty stable, no major changes in your health condition?
I didn’t have much luck with Taltz. it probably was the least effective I tried.
Your mileage may vary.
Thanks. How is Rinvoq working for you?
Cosentyx ran out of juice for me rather dramatically over the summer. Now doing the wash out period since it lasts so long in your system before starting Tremfya. Doing surprisingly well on no meds presently thankfully.
That’s encouraging that you are managing well between meds. Does it tempt you to keep going without biologics and see if the mystery of PsA has you in remission? Is there some logic for Tremfya to be the next med or just a stab in the dark?
Every biologic I’ve been on didn’t make it the full time, 2 weeks, a month, 8 weeks, etc. Normally the 4-5 days before an injection were bothersome. Right now I am on Humira and the 3 days before my injection are painful.
I switched to Simponi so Medicare would pay for it. I get it by infusion so doc can dose it by my weight. It has been three months. It seems to be doing okay.
Rinvoq worked pretty well. It got rid of terrible costocondritis I had. I just couldn’t afford it (well, it wasn;t worth what it would cost) now that I am on Medicare. The Co Pay cards cannot be used if you are on Medicare. Since I have to get Simponi in the offce, Medicare pays for it. That makes sense???
Every biologic is a stab in the dark as the science isn’t there yet to be able to say if can work for each individual patient. The science on this is developing though mainly in cancer patients for now but at least the science is coming.
There is logic to trying Tremfya of sorts. I can’t continue with IL17 biologics just anyway because I also have Crohn’s and it’s not recommended. I stayed on Cosentyx because it was likely Cosentyx didn’t cause my Crohn’s as it can do but our protocols on prescribing in the UK would have made it difficult to get funding for further IL17 biologics given my Crohn’s diagnosis. Which sadly means I miss out on the new biologic called Bimekizumab or its brand name Bimzelx which titivates the entire of IL17 and is currently being feted as the next best thing.
I have quite a lot of spinal involvement in my PsA so something like Stelera wasnt recommended. And since I’ve done better on IL biologics rather than anti-TFNa biologics, Tremfya which titivates IL23 was next on the list on type of biologics I’m on. Years ago I was going to be involved in research for it, but I fractured my pelvis (osteoporosis issues) so couldn’t do the research. So it makes sense to try it now. It takes two years to reach full efficacy and its first review is at 24 weeks so it’s not fasting acting by any stetch of the imagination. So it’s just as well I doing OK presently besides some annoying tendon issues going on in one foot.
Am I tempted not to medicate PsA? No not on your nelly! PsA is so insiduous and sneaky I wouldn’t dream of it. There simply is never a sustainable remission with PsA although it can have lots of pretend ones. It tends to come back and bite you on the bum hard. I’d rather try and stay ahead of it as much as I possibly can. I’ve been fairly successful at doing that this far since 2016 (despite so few meds actually working really well for me) so it would be silly to drop the ball now. I had four and a half years of magic on Cosentyx, so here’s hoping I’m lucky again.
Excellent infor for all of us @Poo_therapy, your wealth of experience and knowledge shines, thanks for being so diligent in replying to all those who post here. Sure miss some of the other “old timers” from when this forum was in its early days. Certainly hope for a long run with Tremfya for you.
Thank you. It’s not experience any of us wants though but it’s worth sharing and trying to help others. And it’s Tremfya which is next for me - since Cosentyx stopped working.
I’m 6 days from next Taltz injection and the good results of it are quickly waning. Stiffness and joint pain is on the rise. I see my rheumy in April and if this is a consistent issue, she may put me on every 21 days instead of 28. I guess because the RX company doesn’t want to have more than one size of auto-injection, there is no in-between. She said that it isn’t approved for higher dose for PsA…only for psoriasis. I don’t really want higher doses of anything but it sure feels good to feel good, walk without a limp for 3 weeks and have better energy. Time will tell…maybe the existing dose will keep improving.
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I was pretty much like that when Cosentyx was working which like Talz was an every 28 day med too. My last week was always a struggle. Some far worse than others. But to put it another way I never forgot to take a dose, that would have been impossible. By the time dose day came around again I wanted that dose very much. As I knew I would feel a lot better afterwards. Until we knew the med had eventually failed me after 4 and half truly wonderful years in the main, PsA wise.
But with PsA I never have the expectation the med is going to be amazing the whole way from dose to dose date. Three to three a half weeks out of four was plenty good enough for me. You also have to remember PsA itself is a waxing and waning disease. So other issues can cause it flare even on the best of meds for us. Its fix (such that our meds can give us, since no med can promise full medical remission just anyway) can be quite fragile really, so my attitude is to grab the good stuff when it presents itself.
Certainly all the other things like joint count etc remained under control, despite for me, so overall my general disease activity was much reduced which was what was wanted as that significantly lessened the chance for damage to occur. So it was certainly doing a heck of a lot for me in order that I could get on with my life without too much to complain about too.
I wonder why your expectation is that a med should have to kind of eliminate every notion that you have a serious and chronic (meaning no cure) disease, or that means the med isn’t working well enough? It of course might not be your expectation but that of your rheumy’s instead. But I find it kind of unrealistic given what PsA is and how it behaves and why it behaves the way it can do.You’re not a year in yet, the med itself doesn’t reach full efficacy for a year anyway, you’re significantly improved and in my head that’s a win really. A fairly heftly win really, a win to celebrate.
I once asked my rheumy how do we both know when this is as good as it gets? Her view was that she wanted me in a state where I was more better than I was worse and where I was living my life with as few restrictions within reason as possible given all the other things like an ageing body too. And where no actual damage to was actually occuring such as joint damage or tendon damage either. And then she looked at me and said but you are now 60 ( I’m now 63) so please don’t think you must have the energy of a 20 year on these meds, laughing. She said I can hope to keep PsA at bay for you but I’m not a miracle worker and neither is any med.
So for me provided I can do the things I want to do which is work a full day, have enough afterwards to do the usual household stuff, where I sleep well, can walk my dog, meet friends and generally live a fairly bog standard life, go on my boating holidays and more active walking based holidays (although I’ll always pace them carefully too) - then I’m good. I might spend a week a month or whatever feeling a bit lower on the wellness stakes PsA wise but so what. It’s far better than spending the entire month feeling pretty awful.
Cosentyx was my 5th med and so far the only one to work for me in anything approaching a sustainable fashion. So my expectations it would work were low to start with, I guess. And when it did I felt like I had won the lottery frankly.
I’m two months into Tremfya now and I feel like rubbish all the time. Everything hurts often at once, my sleep is absymal, my energy levels under the table, I’m struggling with brain fog stuff and everything is a struggle every day almost. But since Tremfya is slower at getting going than Cosentyx I know I simply have to be patient for now. There is no magic bullet really. But that’s the reality of a disease which actually has no real cure.
Sorry to hear that you are in a trough waiting for Tremfya to kick in. I don’t think it is so much that my expectations are unreasonable, I am an optimist most of the time. Having such good improvement for 3 weeks of course makes me wonder, “Why not 4?” Your input as usual is quite sensible, thank you. Hey I learned something yesterday! We took our 11 year old grandson 10 pin bowling yesterday for his b’day…PsA and throwing those darn heavy balls with fingers stuck in the holes is NOT good for the hands, wrist, elbow or shoulder! There should be a warning on the bowling balls, “Not recommended for people with PsA.” But then again, I probably wouldn’t have listened cuz I wanted to win. Man I’m feeling my joints today!
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Hopefully you’re feeling better today.
The general idea that the meds have to build up in your system to get that full coverage that will last past when you’re due for the next injection. I feel like that also happens on the tail end when needs are pooping out
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Here is the latest. I just spoke with my rheumy, a good but quick phone call. When I am on 100-200mg celecoxib, I feel pretty good but my stomach acts up and I become lactose intolerant. If I quit celecoxib, within 2 weeks, dairy in moderate amounts doesn’t bother me (I’m not a milk drinker but like cheese, yogurt and a bit on cereal etc.) And now I’m experiencing my 3rd month in a row in which the Taltz benefit fades in the last week. Her solution at this point is: Try using coated Naproxen instead of celecoxib and take a prescribed med for stomach protection. Also, she just increased my Taltz to every 21 days. So all in all, I have been heard and action is being taken. We’ll see how it all works out. Oh yea…When I go off of Celebrex, I get terrible headaches coming from around my eyes. Eye doc suggested that it is inflammation of the eye muscles, my eyes themselves are healthy.
We hope this will be a big seller in the UK and world wide!
Strictly a health item…no politics even remotely suggested!
Were you taking Celebrex without a stomach protector like omeprazole or anything similar? We simply can’t take any NSAID regularly without one. I’m so shocked you weren’t prescribed a stomach protector med with Celebrex.
I’ve taken Celebrex since Viox was taken off the market and only when I complained about stomach issues was a prescription given for stomach protection. But in the past, I would only take Celebrex in spurts of 2-3 weeks at a time for disc herniation issues. It’s only in the last year that I have stayed on Celebrex constantly. I guess time will tell as I will be on a 21 day regime of Taltz. Perhaps the higher dose will eventually allow me to go off nsaids etc.