Whining + New Meds (Otezla)

General
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Not sure if this should be better placed in the Emotional Support category but it’s kind of a combo so here goes:

After almost a year of trying to get Cosentyx to work, including adding a second DMARD (which I just couldn’t tolerate anymore so I’m off that again) and doubling the dose, I’m moving on.

New med will be Otezla - and from what I’ve read we’ve got a mixed bag of results (as usual) but it’s heartening that many people who’ve had little luck with anything else have had luck with Otezla so I’m holding on to that. (and I’ve failed, so far to date, Plaquenil - allergic, Enbrel - allergic, Humira - didn’t do anything, Cimzia - nadda, Cosentyz - nope, and Leflunomide - did not tolerate side effects)

Continuing with my methotrexate (I ask every time, but she still won’t take me off it, lol) as well but I’ve been tolerating that pretty well for a while so I’m not too concerned.

Also getting a podiatry appointment (next week) because my poor foot is just a mess. It’s been awful since January, a swollen, hot mess. And now my toes are turning colors (one has what almost looks like a permanent bruise on the middle joint). Oh, and from walking funny I’ve managed to move my footprint - because I can’t put weight on the forward inside part of my foot and haven’t been able to for over 5 months. Though at least my skin has recovered somewhat/adjusted to it’s larger size and is no longer cracking and peeling off regularly. Though if it ever goes back to its normal size I’m sure it’ll look like a raisin, heh.

It’s like all of my disease has just decided to concentrate on my left foot only. I still have the occasional aches, and my knees are tender… or maybe it’s just that nothing else compares to my awful foot (horrible disfigured thing).

Anyway, I suppose I’m just down about it. I’m tired of not being able to do things. I can’t be up for too long or it gets worse, and it’s much happier if I keep it elevated and stay off of it, but at the same time I have to maintain my life/house so it’s been a struggle of trying to get some things done (like cleaning, or mowing the yard) and trying not to do too much, but also trying not to get too sedentary because that’s not any good either but at this point what the heck does it matter anyway, right?

Blerg.

Anyway - anyone still on Otezla or with experience with it? Any advice?

Also - out of curiosity - anyone else have increased disease activity/flares during summer instead of winter? It’s odd (according to my Rheum), but the heat just kills me. My hands and feet swell (even more than usual) and I’m just miserable all summer long. Was wondering how much of an outlier that is…

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Hey SF, putting this in General Discussion is just fine. The person you really want to talk to about Otezla is @janeatiu. She’ll give you the lowdown, and may even give you a laugh or two while she’s at it.

Whine? If you can’t whine here, where can you whine?

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Thanks! :blush: Currently dealing with nausea from starting the otezla which I hope will go away after a couple weeks and trying to plan out my grocery trip. Finding foods that I can eat when I’m nauseous is frustratingly difficult. Especially when I’m not sure how long it’s going to last. :disappointed_relieved:

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This, Yes. And so much this. Please make friends with Zantac. Take it before you take your Otezla and take your Otezla with food. The queasiness will pass in time. Otezla was a huge help to me and I think made the Humira last longer than it otherwise would have. Unfortunately my insurance now no longer allows Otezla along with a biologic so I just came off it. And I do miss it.

And the queasiness for me was followed by rampant gas. Like machine gun fire with every step I took. I couldn’t let people in my office for fear of being exposed as a closet farter!

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Oh I hope I get to pass on the gas, since I work in an open office!

I’m a little leery of the zantec, as I think that’s the formula that’s in the vimovo that I was on which was worse for me than straight NSAIDs (I have a very uncooperative system). But today’s nausea isn’t too bad, so perhaps it was the combination of my mtx injection + starting the Otezla that was getting to me yesterday (even though the mtx injection isn’t supposed to cause nausea… ). I’m actually surprised by today’s lack of nausea, but I’ll take it.

I’m off all biologics for now, but I’m hopeful the Otezla will do something useful for me.

Thanks for sharing your experience with me.

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I get it, especially if you have a sensitive stomach. But if there’s an antacid that works for you, I’d use it. It really helped eliminate the nauseousness. The gas attack was relatively and thankfully (for all) brief. No longer then 2 weeks. I just took a lot of walks outside…

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Yup, our Jane delivers again!

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I’ve been on Otezla a long time >18 mo., I really had no choice. Nothing was working. I tried about every biologic made. Had a run in with Remicade, working but made me so sick, I was afraid to do any other biologic. I feel like I settled for Otezla. It is not as effective, for me, as a Remicade. Remicade works well for some but was so toxic for me it really made me reevaluate, cost-benefit, physical cost. After all, are they going to give someone like me a liver? All said I’m glad there is an alternative like Otezla that’s less dangerous. Besides Remicade, it has been as more effective, for me, than the other biologics. I have recently found myself to be lectin sensitive and have had some relief from the constant diarrhea gift of Otezla with vegan option lectin avoidance diet, the only animal product I eat is omega 3 egg yolks, not for everyone.

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I’m sorry you’ve had such a tough time with meds too! Out of curiosity have you tried Cosentyx? I hated all the biologics I have been on except that one, as I didn’t have as much side effects (almost none at all). It just didn’t help as much. But I totally understand the fear of dealing with a whole new set of terrible side efffects and if the Otezla is helping that’s good. And I’m glad you’ve found some relief from the diarrhea - I don’t know if I could give up all animal protein! Though I mostly just eat chicken and pork these days.

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I haven’t tried that one. I guess I’ll have to stay with otezla. Seems like insurance won’t let you switch unless you fail a drug and don’t want to close that door just yet. Hope you have good luck with Otezla.

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Insurance is a frustrating beast.

Thanks!

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I’m new to Cosentyx & I’m loving it! I started out with Methotrexate 12 years ago. Then took Enbrel for 10 years. I had to stop Enbrel because I was having side effects: tingling fingers & numbness; a couple swollen lymph nodes & weight gain. I was so upset because Enbrel kept my psoriasis under control & I had not developed the arthritis yet. I was convinced I’d take it forever! Lol! So then I tried Otezla for three months & my joints started hurting BAD!! And my psoriasis was not under control. It was horrid! The arthritis appeared after having psoriasis for 17 years. I was not happy! So I called my Dermatologist begging for something & fast! I work out & I’m super hyper & I’m on my feet at work for 8 hours; there’s no way I can live like this. She understood & she prescribed me Cosentyx. The fatigue does happen with this medication; for sure! But within days I noticed my psoriasis clearing. I have zero psoriasis right now! And I just took my first monthly injection after the four initial shots. I also noticed my joint pain was decreasing after 5-7 days. I rarely have joint pain now. I did notice that I started to have a little pain in my knuckles a day before it was time for my injection; which was expected. I am able to function normally & I’m hoping that Cosentyx keeps working for me! Just wanted to share my experience with Cosentyx. Good luck all!

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Sounds like the Cosentyx is working ok for you right now! That’s great :blush: I did not get much relief from it, but then I haven’t had much relief from anything after starting biologics :stuck_out_tongue_closed_eyes: though Cosentyx was my favourite, Orencia want bad either - I didn’t have nearly the side effects that I had with all the others.
I’m on to my 7th once I get past this virus I’ve caught (just failed Orencia, and my next stop is Simponi infusions).

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