I really had high hopes for Cosentyx (IL-17) working for me after Enbrel started diminishing in effectiveness. After 8 weeks, all of my prior involved joints are inflamed and hurting and now I have new ones acting up. Can barely stand up, walk or even type this. The fatigue is just unbelievable…sleeping 10+ hours per days but still exhausted. I’m worse than before I started biologics. My inflammatory marker labs are going off the chart. I don’t think they have ever been this high. They were going up anyway on the Enbrel but this is now double and triple the values from my last Enbrel lab work.
On the plus side, my skin (except for my scalp) is fabulous. Cyndi Lauper was correct about having clearer skin. It hasn’t been this clear since I was on Humira. According to the old SNL skit, it is better to look good than to feel good, and I look mahr-vah-lussss. But truthfully, I would rather feel good.
I see the doctor tomorrow afternoon and trying to figure out which med to try next. Because Taltz is also IL-17, I’m ruling that one out. Also avoiding Xeljanz due to concern about blood clots. I would like to try a TNF biosimilar but those are all apparently still blocked by patent lawsuits in the good old USA. What an awful healthcare system- profits over people!
What I’ve tried so far:
Methotrexate - unable to tolerate side effects, no improvement
Humira - worked great joints and skin but rejected (Humira flu) after about 6 months
Enbrel - never worked as good as Humira but fair control that was diminishing over time
Cosentyx - failed as above.
I’m concerned about the side effects but I’m leaning toward Otezla or possibly Stelara.
Am so sorry cosentyx is having no effect. Best of luck for new option. My younger sister, also diagnosed w psa just recently, has been given sulfalazine if Am not mistaken.
Thank you Letizia. My doctor gave me a prednisone injection so I am much more comfortable today. Unfortunately I have a sulfa allergy so sulfasalazine is off the table for me. I hope it works for your sister and she’s not allergic. It looks like I will be starting Otezla soon. Fingers crossed this one works for me.
I had the same response to Cosentyx. With all the hype, the business about keeping it refrigerated, and the obscene expense (I pay out of pocket for all my healthcare), I hoped for a miracle. I got the exact opposite. Both feet were visibly swollen from ball of foot through the plantar fasciae, into the achilles’ tendons, worse with each weekly loading injection.
After a month I was better and wanted nothing to do with it, but at my rheumatologist’s urging, I injected the last dose I had in the fridge. Half an hour after the injection, I was spewing from both ends (and I rarely throw up!), retching so hard I hit my head on the toilet seat and was lying on the floor bleeding and groaning and holding my stomach!
Fortunately, the symptoms passed and I don’t seem to have bloody diarrhea or other ulcerative colitis symptoms (a recognized adverse effect), but I am putting secukinumab firmly in the HELL NO column for me!
Are you also taking Methotrexate? Humira failed for me because I developed antibodies for it. Cosentyx did nothing. I am now on infusions. Scary to start and a pain to have to go to the chemo lab every 6 weeks, but I can knit again for almost all of the 6 weeks. My rheum kept me on mthx so I don’t develop more antibodies.
I realize this is old so hopefully you have found a solution by now.