Its been a rough road and right now being in a really bad spot I guess Im just reaching out to see if anyone else is in this boat. Not that I wish it upon anyone, but it would be comforting to know Im not alone in this case.
Over the course of four years i've tried
Humira, Cosentyx, Cimzia, and Stelara and Simponi.
Long story short each had varying degrees of effectiveness with Simponi being the most effective.
Humira may have led to cardiac issues. Worked decently for symptoms
Cosentyx led to significant weight loss and extreme malaise. Worked minor for symptoms
Cimzia was not effective and I began to have uveitis while on it. It also caused this extreme burning in my legs
Got Colitis for the first time while on stelara( some docs say it was a side effect from the stelara) either way I've never had it before or any other GI issues. But the decision was made to discontinue.
Simponi was hands down the most effective but the "hangover" was so extreme
The best way I can describe it is like the hangover you have from waking up after general anesthesia. It was the most bizarre scenario. The "hangover" would literally pop up out of nowhere and just hang for a few hours and then just disappear. It would happen in extreme episodes rather than a constant, but it was a daily occurrence.
All the meantime my bloodwork was mostly within normal limits.
After running through all these options over four years, Im currently not taking any biologic. While my pain has increased pretty well, Im physically feeling dramatically better. My energy is up, my brain isnt foggy, I dont feel sick. Yes Im in a fair amount of constant pain, but its much easier to deal with than the prior side effects.
Looking back though I cant describe how depressed I feel knowing what I've tried an how it all failed. A lot of work and gutting it out went into it to end up back where I started.
Has anyone else been through a similar road where they failed with the biologics. Or dealt with a hangover like feeling from any of these meds.