Otezla?

Hey everyone!! New medication, again, and weighing in on what you all have experienced if you’ve tried Otezla. I started the dose pack Thursday, a little nausea and headache, next day, nausea, upped the mg, worse nausea. Now I’m up to 20 mg and upping to 30 mg tonight. I’ve been so nauseous all day and do not want to think about food. Has anyone had this in the beginning? Just hoping it gets better the more I get used to it. The headaches come and go but the nausea is awful! I’m really wondering if it will get better after I’m finally up to the 30 mg dose for a while. Just looking for others experiences! Thanks!

The “search” at the top right will lead you to plenty of discussion, but the person with the most amusing Otezla experience is moderator janeatiu. If you’re lucky, “Our Jane” will have a few things to say.

Oh I so feel you on this! Most people don't get past the 4 week mark if they have serious side effects. But I toughed it out because I was so frustrated with how badly I felt before I started taking Otezla. I'm now 15 weeks into Otezla and it has really turned things around for me. I feel better than I have in about 18 months. I have more energy and less pain.

My experience with Otezla was much like yours. I was at a loss for how to handle the nauseousness and tummy troubles. But I looked around online and saw that a basic acid reducer (like Zantac--and I did double check with my pharmacist to be sure it was OK to take with all the other pill/potions I use) could be used to help quell the problems. It worked really well for me and I simply had to plan more effectively for meals and allow enough time between taking the Zantac and taking the Otelzla with food. I went through some of the nastiest four weeks of GI issues and farted like I was on the set of Blazing Saddles for quite some time. I also got some pretty severe headaches, too. Rest and pain meds helped.

It seems that Otezla is pretty unforgiving. If I haven't looked after myself during the day, say I haven't eaten at regular intervals, or I've had too much caffeine or not enough water, then I still get those feelings of queasiness. The biggest daily challenge is to eat three meals or at least three heavy snacks at consistent times. But if I look after myself then the Otezla does its job and I no longer notice the side effects and I soak up all the benefits.

Feel free to private message me if you want to know more! Toot toot!!

PS: eat whatever you feel like you can. I consumed LOTS of potato chips and rice pudding as they were what appealed to me most and the thought of them didn't turn my stomach. And all mu inflammation has now gone so I lost the extra 10lbs above my normal weight that I've been carrying for 18 months.

I can’t look at food right now, can’t smell it…its been so awful. I see my rheum Thursday! I am already on omeprazole, have been for a long time. I have a history of GI issues but never like this!! Good to know its not just me! I don’t know if I have it in me to wait out weeks of this feeling. I’ve weighed 117 pounds my whole life and feel like I’ve already lost 5 pounds, and can’t afford anymore. Thank you for your story, sounds about right :). It’s good to know I’m not alone and that if I can hold out, maybe this could work for me. I will say that right before I started taking it, I had the worst swelling in my fingers, sore to even touch, and today it feels and looks much better! Could be the change in the weather, or maybe it’s doing something :). But as of right now, I can’t even leave my house my stomach is such a raging mess, it hates me right now!



janeatiu said:

Oh I so feel you on this! Most people don’t get past the 4 week mark if they have serious side effects. But I toughed it out because I was so frustrated with how badly I felt before I started taking Otezla. I’m now 15 weeks into Otezla and it has really turned things around for me. I feel better than I have in about 18 months. I have more energy and less pain.

My experience with Otezla was much like yours. I was at a loss for how to handle the nauseousness and tummy troubles. But I looked around online and saw that a basic acid reducer (like Zantac–and I did double check with my pharmacist to be sure it was OK to take with all the other pill/potions I use) could be used to help quell the problems. It worked really well for me and I simply had to plan more effectively for meals and allow enough time between taking the Zantac and taking the Otelzla with food. I went through some of the nastiest four weeks of GI issues and farted like I was on the set of Blazing Saddles for quite some time. I also got some pretty severe headaches, too. Rest and pain meds helped.

It seems that Otezla is pretty unforgiving. If I haven’t looked after myself during the day, say I haven’t eaten at regular intervals, or I’ve had too much caffeine or not enough water, then I still get those feelings of queasiness. The biggest daily challenge is to eat three meals or at least three heavy snacks at consistent times. But if I look after myself then the Otezla does its job and I no longer notice the side effects and I soak up all the benefits.

Feel free to private message me if you want to know more! Toot toot!!

PS: eat whatever you feel like you can. I consumed LOTS of potato chips and rice pudding as they were what appealed to me most and the thought of them didn’t turn my stomach. And all mu inflammation has now gone so I lost the extra 10lbs above my normal weight that I’ve been carrying for 18 months.

So sorry to hear it's tough for you right now. I had some initial and significant weight loss associated with nauseousness. But it did pass. Definitely talk to your rheumy. There may be something different you can do to protect your gut. It is NO fun when you're system is all out of whack like this. Like you, though, I saw decline in symptoms very quickly on Otezla. But it really took until week 12 for them to be consistent.

Maybe with your rheumy you can establish a date by which you call it quits. And I know food seems totally off for you, but see if there's something that can offer you comfort: rice pudding; apple sauce; dry toast; a carrot? For me, starchy foods were the only thing that could counter the queasiness. Even a banana or yogurt in the morning couldn't stand up to the medicine. But rice could. And potatoes. I did eat a LOT of rice and mashed potatoes those first few weeks.

Good luck and keep us posted.

Am around 8 weeks in to Otezla - felt awful for first 5 - nausea, vomiting , diarrhoea. D and V is less now, but still having days with intense nausea. Saw rheumy at 6 week stage - not seeing a great improvement yet - but we have agreed to keep going with the drug for a 12 week trial, as am keen to get something to help me. I have used prochlorperazine prescribed by my GP to try and combat the nausea/vomiting, and just went with eating whatever food my system could cope with. I do hope things settle down quickly for you.

I have been on Otezla for 1 1/2 years. IT CHANGED MY LIFE!!! Nausea only a few times a month. I swig over the counter Emetrol.

Hi just started Otezla yesterday..nausea and plenty of bathroom breaks. I got a dull headache an hour after taking my first 10ml dose. I am only on day two and have been feeling like I'm at the beginning of a cold.Hopefully it doesn't get too much worse.

How are you feeling now?

My doctor had me stop taking it on day 6, she said how I was was not normal, so I finally feel better. But now for another med change…start Stelara soon, not looking forward to it since this will be my seventh med in 3 years…hope you get better and do not have to come off of it!!