Found out last week that I’m making antibodies to Remicade. The only meds I have left are Tremfya. And Tremfya.
So we’re going back to Simponi because the last time I remember my body feeling okay-good was when I was on Simponi infusions. We thought they’d stopped working so we switched and I swear I haven’t felt good since.
I have no idea if this is a lost cause. I’m dreading the stretch between here and the end of December when I’ll get my first dose of Simponi. But also what if it doesn’t work at all? What if the reason it stopped working was the same as why Remicade has stopped working (which let’s be clear worked just barely.)
The week before my last Remicade infusion I couldn’t brush my hair and could barely dress myself (both shoulders had intense pain when I raised them and my right hand was just buggered). If I’m making antibodies I’m worried I’ll clear it even faster and spend who knows how much of December in too much pain to do anything.
Oh I’m so sorry. That sucks. I must admit I’ve had quite a few biologics fail and don’t have many left (Remicade and Remicade, which I’ve just started), and it scares the bejesus out of me.
Mind you, I have spent the last six months without any biologic (don’t ask), and what that has taught me is that for me, a poorly performing biologic is much better than no biologic at all - cause then my immune system goes off and finds all sorts of new targets and ways to to attack me (eg development of vasculitis).
I don’t have any advice, I just wanted to say I feel for you, and I hope the switch to Simponi helps. The gentlest of virtual hugs.
Oh my, much yes to the better a biologic that kind of works to nothing!
I’m glad that I cleared with my doctor on whether I can return to drugs (barring a reaction or antibodies I guess) because that does relieve some of the stress of “what now? There’s nothing left” - we can at least go back to the list and try old ones that stopped working and see if they’ll do enough to improve on what we have.
A lot of people have good luck on Remicade! So I hope it works for you. It did/does give me some relief, I just wish it lasted the whole 2 months (and the whole antibodies thing).
Are you on a helper drug/co-therapy like methotrexate or something? I know those can help booster/extend how long you can stay on a biologic without making antibodies. I was on MTX but it started causing potential toxicity issues and I had to stop it. I’m on Sulfasalazine now but can only handle the half dose (and I’m allergic to plaquenil and areva was bad on my gastrointestinal stuff it’s never ending isn’t it?).
Xeljanz did not work (gave me a bout of depression to boot and these awful muscle spasms that still haven’t gone away - but have gotten better so idk if it was Xeljanz that did it). She won’t try me on Rinovoq until it’s approved and it’s been held up.
I’ve been on Rinvoq for 9 months. I would suggest that you revisit your eligibility for Rinvoq. It HAS been approved for PsA. treatment since June 2021. Abviecare has been fantastic to deal with first when I was on Humira and now with Rinvoq. Two days ago, they contacted me to answer 6 questions and then approved me for Compassionate Supply of the next year of Rinvoq at no cost at all. ( I wouldn’t be on it if it wasn’t for their compassion program) I would encourage you to keep pressing on.
Rinvoq has not been the instant “miracle” drug that I hoped for but I have complete mobility, though not always easy. And I have not encountered any nasty side effects while on it. For me, it seems to be a drug that moves at turtle speed but in the right direction. Article AbbVie Provides Update Regarding RINVOQ® (upadacitinib) in Psoriatic Arthritis and Ankylosing Spondylitis in the U.S. | AbbVie News Center
That says that it’s approved in Europe not the US. Not only would my insurance not approve it my Rheum will not likely prescribe it (and she’s the best one I’ve had I’m not moving to someone else).
It’s not even particularly likely to work for me anyway - Xeljanz works by the same route and did nothing (and had undesirable side effects I did not tolerate well).
I’m in Canada and so far it is still being prescribed…but who knows the long term affects of all the stuff we throw at the fire to put it out and the behind the scenes politics of it all. I had my annual physical yesterday and my GP said that she has a number of patients that after trying every biologic, quit everything and are doing better on low dose prednisone than anything else. (less than 15 mg) They know the long term risks but are enjoying a high quality of life. Close to 3 years ago before being diagnosed with PsA, I “fine tuned” myself to using 12.5mg/day of prednisone and I haven’t felt that good since. JAK inhibitors, MTX, Humira, Sulfasalazine, and one I can’t remember…nothing worked as effectively as low dose prednisone. Go figure!
I mean more power to them. I’ve been on steroids and they make me miserable and don’t really help at anything other than at the rage-dose. Which isn’t very helpful in regards to maintaining my employment or relationships. Lol. I’d rather be in pain than make everyone else around me miserable.
it’s never ending isn’t it?).
