Otezla Survival Guide

I started Otezla a little over two weeks ago but had so many side effects I had to stop. Not sure where I am going next on my PsA journey, but I hope my Otezla experience can help someone else. Below is the list of side effects and what I did to cope.

  • GI (nausea, vomiting, diarrhea, stomach pain, indigestion, reflux): As suggested by Janeatiu, I started eating something and taking Zantac (ranitidine) before each Otezla pill. For the diarrhea, I used Imodium every other day. The diarrhea did decrease after two weeks as promised. Unfortunately nothing else did.

  • Dehydration and dry mucous membranes: I increased my hydration including drinking a glass of water before getting out of bed in the morning. This seemed to help several of the symptoms including the nausea. I also used cool mist humidifier at night.

  • Sinus pain/congestion: Claritin-D (loratadine/pseudoephedrine) although any allergy/decongestant combo would probably work just as well. Also use of a Neti pot and inhaling steam.

  • Migraine headaches: prescription migraine medication plus caffeinated beverage.

  • Insomnia and sound hypersensitivity: I had a terrible time falling asleep partly due to pain but also would be startled awake by the slightest noise. Because sleeping meds cause dryness and I was already dried out by Otezla, my only option was just to use ear plugs and sleep longer.

  • Extreme eye inflammation and pain: I tried using my regular eyelid wipes and Refresh lubricating eye drops but this wasn’t enough so I added Genteal nighttime lubricating gel which helped. However, the inflammation got worse by the end of the first week and I was concerned about uveitis so I went to the eye doctor. No uveitis luckily but a LOT of inflammation for which I was prescribed steroid eye drops. This knocked down the pain and inflammation but can only be used short term.

  • Worsening joint pain: Especially in joints not previously effected such as ankles and wrists. Short walks, NSAIDs and Epsom salt soaks.

  • Muscle pain/muscle spasms/Charley horse: This seemed to be mostly in the large muscle groups (quadriceps, hamstring, biceps) and it would move around. Different muscle every day. The pain so bad it was impossible to sleep or do much during the day. Tried Epsom salt soaks and Aleve (naproxen). This only helped a little and I couldn’t take the Aleve as much as I needed because it increased the stomach pain and nausea.

  • Nerve pain: This involved shooting pain down my arms, tingling in my hands and occasional shooting electric pains in my head and ears. Not sure what this is about and there wasn’t much I could do for it as it would come and go.

  • Increased psoriasis: My skin had cleared on Cosentyx but now it is all back. I have been using prescription topicals and Vaseline.

  • Depression/irritability/mood swings: I don’t know if this is an actual side effect of Otezla or if my I was blue because of being so miserable from all the other side effects. I had thought about getting an antidepressant from my GP but since I stopped the Otezla and the side effects started going away, my mood improved.

There were probably a couple other side effects that I am forgetting but these are the main ones. It was all just too much and since the Otezla seemed to be increasing my inflammation instead of decreasing it, I decided to stop. It has only been a couple days but I am already feeling much better. I don’t want to discourage anyone else from taking Otezla if they can get some benefit from it. Other than the GI symptoms which are warned about, my experience is probably not typical.

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For me, I never ended up adjusting to the side effects.

An experienced rheumatologist correctly predicted that if the symptoms didn’t start getting better within 7 days, then they wouldn’t be better at 30 days. The rheumatologist told me the drug wouldn’t be right for me. The rheumatologist was correct.

Otezla is a PDE4 inhibitor. Phosphodiesterase enzymes are relatively well conserved and used all throughout a variety of cells serving all kinds of varying functions; most people will have severe side effects. One pulmonologist using PDE5 inhibitors for lungs told me 80% of his patients had to drop off them due to severe side effects.