Who out there has been on most or many biologics along the way? When do you decide to stop trying another biologic?
I’m flaring again, enough to have the rheumy probably move me yet again. In four years I’ve been on Enbrel, Remicade, Otelza, Cimzia, and Humira. And of course the assorted DMARDs etc. along the way: Sulf., MTX. Plaquenil, and all the Prednisone possible.
I’d love to see research or articles that talk about uncontrolled PSA or what next. A little disheartened but mostly would love to see what the literature or your experience says.
I'm only on my second biologic (Simponi) after Humira didn't work at all. But the key thing I wanted to say is that someone on the forum (I can't remember who) has had success going back on to a biologic they tried previously. Hopefully this will triggers someone elses memory?
Thanks, Jules. I do believe you can repeat SOME but not ALL of the biologics. Patients can develop antibodies that rule out returning to some biologics such as Remicade, but others please weigh in here.
and an update: I was put on Stelera today.
Jules G said:
I'm only on my second biologic (Simponi) after Humira didn't work at all. But the key thing I wanted to say is that someone on the forum (I can't remember who) has had success going back on to a biologic they tried previously. Hopefully this will triggers someone elses memory?
I also have been on many different biologics in the past three years. I feel for you. I’m in the same boat. On top of trying methotrexate, plaquenil, and sulfa-something, I tried Enbrel, Otezla, Humira with great results that wore off after a year, simponi, cimzia, stelara, and now back to Humira to try again. It’s been 8 weeks on Humira again, and I was finally starting to feel a bit better, but the mornings are still the worst. And today, my ribs hurt so badly I want to curl up and do nothing all day. I have an appointment in two weeks and I am afraid of what she will say since the last time I saw her it was “well if you don’t feel better, I’m not sure what our next step should be”. She’s afraid to put me on Remicade since I was allergic to two of the other biologics (Enbrel and Cimzia) and I am not ready to give my 31 year old body over to the drugs that might affect me having children. I hope for you and I that there is something more for us. I wish you luck and hope that if you find any new information, maybe you could pass it on to me as well!
I also have been on prednisone more than I would like, but she did give me Meloxicam recently, which seems to help some, since I hate being on prednisone and between August last year and now, I probably was only off of it for about 4 weeks!!!
Funny, I just discussed this with my Rheum a few days ago because I am also running through biologics like Pooh Bear runs through Hunny. Since diagnosis, I have been on Humira, Remicade, Enbrel, Cimzia, and Simponi, and MTX for my only DMARD and I was beginning to be concerned that at some point there wont be a next drug available. She told me, it's not that you can't go on a past med, but for one reason or another, we usually don't. Could be that you had a bad reaction to a drug, or it had no effect whatsoever (what's the point in re-trying a drug that didn't work in the first place?), or there are financial issues, etc.. It doesn't hurt to re-examine past drugs. Changes could have occurred since the last time you took them; dosing could be higher or more frequent, new programs to assist with payment could be available, there may be a drug to pair it with that helps efficacy, etc.. It was an interesting conversation, and made me so much less anxious about the future of my med management.
My rhuematologist has prescribed Enbrel. I have taken Remicade, Orencia, Humira, Stelara. Before the biologics I was ANA negative. Now I am positive. Is this likely from the biologics? I inject 25mg MTX weekly.
I know many of us have played "musical biologics" ( like musical chairs ).
Have any of you tried Enbrel after multiple other biologics?
I have been on MTX non-stop since 2011, I have also tried Humira, Cimzia and Remicade. Each works about a year then fizzles out. I have been tested for antibodies but don’t make them at least against remicade. I am going to start Stelara next, the doctor said there is a possibility that the TNF drugs are just not the answer for me so I’m not doing Simponi next.
I also I on the ban wagon of nothing working. I have PsA and nothing works for me. Remicade caused me to have flare ups even increasing it didn’t help. I tried all the other ones like MTX and just recently stopped using g otezla due to side effects. Honestly the only thing that,works for me is prednisone but we all know that is horrible stuff. I can’t take anything over the counter because it rips my stomach apart. Along with that my regular doctor keeps me in supply of pain meds but I know that it isn’t the answer either. I am so discouraged. Why can’t we find something that works that doesn’t have horrible side effects or just quits working after 1 month…yes 1 month. My body just hates itself and all these crazy drugs…
New guy chiming in. I have tried humira, cimzia, stelara, and one more I am not sure. Now, I am back on humira. Almost 3 months in with no results. It appears to be common practice to keep rotating meds if symptoms occur–flare ups with significant psoarisis. I think part of the problem for me anyway is teasing out what symptoms are from fibromyalgia and what are psoriasis related. The saving grace for me is my pain medicine-vicodin.
I found this topic because my fourth biologic seems to be failing. It usually happens within a year. Is there anyone who has switched biologics many times who finally found one that works?
I am on my 5th one. 6 counting Otezalla. Started on Otezzala 8 years ago for year, then was moved to Enbrel for about a year. Rhuemy decided to try something else to see if we could get better results. Then Coesentyx, Humaria, Taltz, and now Tremfya. Taltz was a loser. I stayed on all a year or so before changing.
The results have all been about the same. Some reduction in pain. The Tremfya seems to be helping with the fatigue more, but I am still in a lot of pain. My doc said he is running out of ideas. I think we will stay on Tremfy until Fall. He said he may want to go back to a TNF and try an infusion so he can dose it for my weight. I am a pretty big guy.
I think I have received about all I am going to get from the biologics may be a modest slow down in progression, but I am starting to wonder about that.
I won’t say none I tried do not work, they just did’t do much for me. I am IL-27A negative. Not sure if that has an impact or not.
Also, I cannot take MTX with them. My heart does not like anything related to an NSAID. So, I have nothing to take for inflammations. If it gets bad, I’ll do a shot or a round of roids.
Each time I switched biologics, they’d usually work for a while. Might be 12 months (or they fail on one of my other diseases - eg Crohn’s), or the mammoth nearly 5 years I got out of Humira. I went through at least 4 and still had a few left to go, but am now considered so immunosuppressed (cancer treatment) I’m not on any biologic and the arthritis is not more than 30 minutes of mild pain and stiffness in the mornings.
I wonder if any thought has been given to using a JAK inhibitor as it isn’t really a biological. Maybe your system would be be able to handle Rinvoq and you could keep the arthritis at bay instead of slumping badly.
once I start Cimzia again I’ll have retried two biologics (the other was Simponi). I’ve been on everything except a few: syrizi and rinvoq I think are all that remain that I haven’t tried. We’re redoing Cimzia bc I wasn’t on it very long and I’ve had better response to TNF inhibitors than most of the others. Though Tremfya wasn’t bad and I managed to actually stay on it a little over 1 full year.
I’ve also done all the DMARDs and am currently taking azathioprine (Imuran) and sulfasalazine as my DMARDs bc I’ve run out of those as well (and I did not tolerate increasing the sulfasalazine dose).
At this point I just want to be able to cook dinner with out being in so much pain I can hardly stand anymore (or do literally any cleaning task, or hell, something for fun that isn’t sit on the couch bc I used up all my standing time on dishes). Oh and not feeling so fatigued I could sleep for 40 days would be nice.
Not sure what comes after “tried and failed everything” other than “tried and failed everything and what I could twice”.
So yes, retries are possible with some meds. Not sure which ones you can’t. We only tested my antibodies when I was on Remicade so not may just be that one? But idk.
Thanks for the replies. My current biologic is catastrophically failing, and skin psoriasis rapidly went from almost nothing to out of control. The arthritis isn’t bad at the moment though. It was bad, but I did water fasting and then switched to a strict diet, which got the exhaustion and pain under control.
The doctor seems to want to put me on methotrexate and not switch the biologic, which I don’t understand, because it’s failing so badly the skin psoriasis has very rarely been this bad before (if ever). It was so bad last night I only slept about four hours.
once I start Cimzia again I’ll have retried two biologics (the other was Simponi). I’ve been on everything except a few: syrizi and rinvoq I think are all that remain that I haven’t tried. We’re redoing Cimzia bc I wasn’t on it very long and I’ve had better response to TNF inhibitors than most of the others. Though Tremfya wasn’t bad and I managed to actually stay on it a little over 1 full year.