Hi...Today I started Otezla. I am praying for a miracle. I was on Humira with Mtx for 10 years with fabulous results, then it stopped working completely and I got horribly ill. Before that I had used Arava, Remicade, Embrel and Sulfasalazine. While on Remicade I became ill with a stubborn pneumonia...the other things did not work until the Humira and Mtx. The past 18 months have been brutal particularly with the inflammatory arthritis part of this disease, though the Psoriasis is no picnic either. But I am hoping and praying the Otezla works, and that the side effects are not too horrible. I am grateful to find a place where people understand this very difficult journey.
I guess 10 years of humira and mtx working is great! I wish those biologics wouldn't fizzle out. Always gives one a little reason to worry that this Enbrel won't work forever, and someday I'll be feeling crappy and worried nothing will make me feel better! :-(
GigiBraun said:
Thank you! The past 18 months have been really, really bad. The ten years Humira & Mtx worked were wonderful...so hoping Otezla is successful!
Today is day 3 of Otezla...stll titrating, but no significant side-effects...had a little tummy upset but very mild...and a headache that lasted several hours but also pretty mild. Still hoping Otezla will bring some relief.
Hi! There has been perhaps a very slight improvement, but I am just at 6 weeks. I have had some stomach issues, but nothing that would make me consider stopping the Otezla. I will continue hoping for success. Gigi
Hi...I am now 8 weeks in, and quite recently I have started having some unusual stomach pain...it feels like a wave mmoving across my middle abdomen from my left to my right...a cramping of sorts but even more intense and at its worse literally takes my breath away and leaves me feeling so weak and as if someone had punched me hard in the stomach. It is happening every day though sometimes it is quite mild and other times so horribly intense. I do have some gas with it, but the pain at its worse nearly knocks me to my knees. However, it does not last long...perhaps up to a couple minutes...so I try to breath and hold on and wait for it to pass.
Hi...I have reached 16 weeks on Otezla and my PsA is definitely doing better...the pain is down probably 50% and the swelling most of the time down perhaps 30% and the stiffness down about 30 as well. The psoriasis is down about 30 as well. The only side effect I am still having is gastro related...the intense but transient stomach pain is down about 50% in frequency...the intensity is usually down perhaps 70%. I am very grateful the pains do not come more often...the pain is exquisite and in the midst of them I think I cannot continue to have them...but because they do not last long I soon rebound and am grateful for the improvements I am experiencing.
The stomach pain and discomfort continues and I have to consider stopping the Otezla. I hope this doesn't sound like the dumbest question n history but here it is: IF the stomach pain (which can be HORRIBLE but is usually bearable) is 'just pain' and not doing some terrible gastric damage, I could stay on the Otezla because there has been some benefit. am a tough cookie. : ) However IF the stomach pain is because the Otezla is damaging my stomach (plus having to endure the pain) I probably better stop. How in the world does one know? Does anyone here know?
Gigi, what a bummer. I’m sorry you’re having this experience with Otezla. If it were ineffective, it would be easy to pack it in, but you are getting benefit from it. Dilemma. As if dealing with this disease wasn’t hard enough already.
That’s not a stupid question at all! And I’m sorry, I have no idea what the answer is. Your rheumatologist will though, and your pharmacist may know as well. If they don’t, I’m guessing that they can find out for you.
When you find out, don’t forget to let us know!
Thank you so much for your reply. I could not reach my Dr this afternoon, but I did call the pharmacist. He said to be sure to eat something substantial before I take Otezla like 1/2 a sandwich (I had been eating a yogurt but the pharmacist said that would not be enough) and that I could try a dose of Pepto Bismol beforehand too...the Otezla instructions say you can take it with or without food...but yikes my tummy could not do that. I will post here how I do.