Miserable side effects?

Hey everyone, i was wondering if anyone has had any issues with side effects from otezla and methotrexate. My rheum bumped me up to the 30mg of otezla 2x a day and then started me back on the sub-q injection of methotrexate once a week. Im finding myself miserably nauseous and it leads to me throwing up after eating most times. Slight headache but the stomache is the worst… i feel like whether i eat or dont eat im sick to my stomache and/or throwing up multiple times a week… any ideas/similar experiences?? Thanks!!

My reumathologists always took me off any drugs before it got that bad… is it an option to try something else?

I’m so sorry you feel so bad! All i know is for MTX to stay hydrated and do the shot at night so you can go to bed after… but it wasn’t the whole week for me… most of it would be gone when I woke up…

I wish I had the solution for you! I hope you find something to help you!

That sounds just awful Jennyfaaa. I’m afraid I’d be back at my doctor’s door banging on it hard if I was like that. I understand the need to tolerate some side effects as they’re likely to pass but without being told the probability of that and when, then I’m not very tolerant of adding such side effects to already bad days. Also with my phobia of throwing up I’d be almost banging on the psychiatrist’s door by now too. That’s said with a smile by the way.

I’d chat to your doctor and/or specialist nurse because being that miserable isn’t right. So hope it gets better soon for you. :persevere:

Hi Jennyfaaa.

Are you able to tell which drug is likely to be causing the problems? Sounds as if you were previously on a lower dose of Otezla and had a break from Mtx, have either of these been associated with headache and sickness before?

As Cynthia says, Mtx side effects can sometimes be prevented or reduced by drinking plenty of water on a regular basis, not just on the day of the dose.

What a wretched situation to be in. I think your rheumy does need to know this is happening and of course there are other drug options. But if all this is relatively new, and if your rheumy thinks it is likely to be temporary, it might just be worth taking a deep breath and persevering a little longer.

Thanks for the feedback everyone! I have a feeling its the otezla… unfortunately i started them about two days apart so i cant tell. Im in a bit of a pickle with the medication thing because ive tried nearly everything and my body “breaks through the dose” or they stop helping and im allergic to any kind of sulfa drug. My rheum has her fingers crossed that the otezla, stelara, methotrexate combo will do the trick but she waited to try the otezla because she thought these side effects could become an issue. I even tried he IVIG therapy in march and i wound up with aseptic meningitis. So im hoping i can hold out and these side effects will run their course and pass right now it just doesnt feel much like it. I feel like ive tried it all and nothing has clicked with my body…

Hi Jen, Recently I added metho weekly injections to my regimen with Humira. The first two weeks were bad, Feeling flu-like and a few days of diarrhea and some headaches, but each week it gets a little better. I also inject just a couple hours before bed and and it really helps the side affects. Are you also taking folic acid? Hang in there. At times I feel like a human crash test dummy.

:cry: I really hope the side effects will get better soon!

Yeahhh im taking folic acid 5mg instead of the 1mg and the last time i was on methotrexate my rheum added leucovorin as well because i had a lot of issues with side effects… seriously thank you everyone for all the responses ive been feeling pretty lonely lately and its good to know im not the only one who this happens to! Ive been feeling alot like how can it be this bad yano :frowning:

Oh jenny,

I know the, shall we say, gastric distress that comes hand-in-hand with Otezla. I’ve ben on 30mg x2 pd for almost 2 years and the only thing that kept me going at the beginning when the nauseousness etc. was bad was generic Zantac. I read a bunch online about how to cope and to handle the side effects. I wanted to be certain I didn’t take something for the intestinal issues that would interfere with the Otezla. Zantac was it. Zantac then wait a little before food and take meds with food. The only time it is an issue these days is if I take my meds at breakfast and don’t eat right away. So to counter that I take my meds with kefir (like a drinkable yogurt). This really helps stave off any nauseousness that Otezla can deliver.

Good luck!

I should never have read this thread as I’m starting on MTX in a few weeks - and, like Poo, I have a phobia of throwing up too! We have some research going on near where I live, which they ask me to be involved in, which simply involves going to see them once a year and telling them how I am doing. It’s to see how PsA and RA progress over a 25 year period. The good thing is that I get to ask more questions there than I do at the rheumy. She said that, while people can feel sick with MTX, they rarely are actually sick. My understanding from reading around is that the injection makes that even less likely, so the Otezla may well be the culprit. I’m hoping I might persuade the rheumy to let me have the injections rather than the tablets, as I was really quite poorly after trying sulfasalazine. I’ll see how much my begging and puppy-dog eye expression will work on her!

No sickness yet darifan since first dose on Sunday although it was injectible. Took 5mgs folic acid on the Saturday too. Slight runs but immodium stopped that. Foggy head for around 8 hours the next day. Low mood though. Hope this helps.

Oh, I’m sure that will work. Has to.
:stuck_out_tongue_winking_eye:

Otezla did not work for me… I became extremely ill with severe nausea and other issues. Dr took me off right away. I am also on Methotrexate . I take Leucovorin to mitigate the side effects. I also have a miserable time with the Methotrexate and did try the injectable form however I was having just as bad reaction so went back to the oral. Have been on other drugs including Remicade however that too caused a severe reaction so my next stop is Cimzia… it is ok. I get about 3 weeks out of it. All in all it’s what keep me moving so I deal with whatever … sometimes can be very frustrating, exasperating… just keep plugging along… good luck

I’m hoping I’ll escape the stomachy things. That’s the one thing I didn’t get with the sulfasalazine - but then I worked up the dose with that a bit at a time. But I think with MTX it’s all or nothign!

Mxt can be worked up dosage wise too. I will say I threw up on oral mxt after first dose horribly. I haven’t on first dose of injectible mxt. Haven’t felt queasy either. Mostly just felt out of it for around 8 hours.

I’m about to start my first medicine… methotrexate, and I’m terrified of the nausea I’ve read about. Has anyone tried taking mucinex DM or robitussin? I’ve read on other forums that it helps. Maybe something to ask the doctor or pharmacist about just to make sure it’s safe?

Not sure it would help with the nauseousness–that’s what the folic acid and drinking LOTS of water are for. But I can see how they would help you rest and then you might not know you feel queasy!

1 Like

Might not happen uglyfeet. Many of us are okay or at least okay-ish with Mtx. I sometimes feel I must be in a very small minority having no side effects from Mtx (have been taking it for over 5 years) but I guess a lot of people see no reason to post about lack of problems.

Good luck, travel hopefully. And let us know how it goes.

1 Like

Sorry, there’s no guarantee that you will get nausea. I didn’t feel a thing, even on a max dose. I’m still on it, along with a biologic.

Here’s an article from our Newbies’ Guide that you might find reassuring.

2 Likes

Oh @Jennyfaaa - I hope it gets better for you. I know mtx can really mess with you (I’ve been lucky that since I’ve switched to injections I’ve barely had any side effects, but I’ve been on it since 2011, without stopping). I hope it’s one of those things that will get better over time!

As a side note, I’ve just been given my starter pack of Otezla and now I’m a bit worried… (a bit, but not enough not to take it, don’t worry) but like you, I’ve so few options left.

Hoping for the best for you.

As a side note - for the nausea have you tried ginger? I have a local spice store in town that sells candied ginger and when I was on the last med that left me wracked with nausea that was my go to. It seemed to help calm things a little, and might be worth a try just as you wait out the side effects to see if they go away?