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Struggling with Cosentyx #280077
03/16/18 09:12 PM
03/16/18 09:12 PM
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ThreeG Offline OP
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My insurance recently refused to reauthorize my Remicade, so after going without a biologic since November, I just did my second loading dose of Cosentyx this week. It really seems to be knocking me for a loop. I'm exhausted, but I'm having trouble sleeping. I'm achy and a bit spacey. I have a sore throat, and my nose, which has been irritated by methotrexate, feels totally congested. I found a thread here before I started it, but I can't seem to pull it up again. I seem to remember that a few people had given up on it due to the side effects. I really want it to work, especially since the drug company program is a breeze compared to Remicade's. I had a flare before the first dose, but it was already easing up before I started, so I'm struggling to evaluate whether it is helping me. I'd love to hear from anyone who stuck it out that it gets better!

Re: Struggling with Cosentyx [Re: ThreeG] #280079
03/16/18 10:35 PM
03/16/18 10:35 PM
Joined: Jun 2014
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NJ, USA
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CBMom Offline
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I didn't have any side effects with Cosentyx, but it did take about a month for it to work. I also needed a dose increase after the 5th dose (I went to 300 mg a month, the psoriasis dose). After that, it worked very well for me - better than any of the anti-TNFs. Hang in there!

Re: Struggling with Cosentyx [Re: ThreeG] #280085
03/19/18 12:26 PM
03/19/18 12:26 PM
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NY, USA
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kjb Offline
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I just took my 3rd loading dose(300Mg) after Enbrel or Humira failed to work for me. I have had some side effects, as far as the exhaustion being worse than normal and a few bloody noses(weird), but all in all I am feeling pretty confident that if I stick to it, it will be one that will help me. I am assuming that it takes a while like the reset of the meds to work to its full potential. I do know that sinus issues are more prevalent with Cosentyx then some of the others. I would makea call to your Drs office and ask about the sinus and throat issue before you take your next dose. Other than that my advise would be stick to it, I believe 2 doses is too early to know if its helping or not. They say it can take months to know if a med is helping or not. I am hoping that the exhaustion gets better as my body adjusts to it.

Re: Struggling with Cosentyx [Re: ThreeG] #280086
03/19/18 01:04 PM
03/19/18 01:04 PM
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awesomeman Offline
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Cosentyx messed me up BAD. I lost 30 pounds in the loading phase. I literally felt like I was being poisoned. I would get this awful pressure pain in my femurs that literally felt like they would explode. I had no appetite and fatigue to the point where you literally feel sick. Just extreme malaise. I also got a candida infection in my mouth. I never had sinus or throat issues though. I thought the symptoms would go away after loading which is why I stuck with it and they only got worse(for me). What the shame is that the cosentyx was working for my AS symptoms better than any other medication, but was just brutal on the side effects. I stayed on it for about 4 months and I just couldnt continue. My tipping point was while on a cruise we caught a stomach bug. While it was painful for everyone involved, it put me in the hospital for three days. After that I just didnt have it in me to ever inject that stuff again. For me the disease was better than being on this med. Like I said it did seem to help the AS symptoms, which is why i encourage other people to stick with it. In my case the side effects where just too extreme. This is just my experience and keep in mind everyone is very different. I encourage you to visit some of the psoriasis forums. They use the same meds and there just seems to be a lot more people that have tried all these meds. A lot of people using cosentyx there with good results. Check it out.


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
Re: Struggling with Cosentyx [Re: ThreeG] #280088
03/19/18 02:45 PM
03/19/18 02:45 PM
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ThreeG Offline OP
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Thank you all! It is so nice to be able to hear from people who have been where I am now. I think I will run it by my doctor and if they don't think there is a reason to give up just yet, I'll stick it out a bit longer. The sinus stuff worries me. I've always had sinus problems. Remicade was actually a great "allergy" med. I had almost no sinus issues while on it, apart from the nose issues caused by methotrexate (sores and bleeding). So, it is doubly bad to lose that unexpected benefit and go straight to swollen sinus misery! To top it off, I'm at a juncture in my career where I especially need energy and a clear head, and, well, I seem to have neither!

Re: Struggling with Cosentyx [Re: ThreeG] #280089
03/19/18 03:19 PM
03/19/18 03:19 PM
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awesomeman Offline
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listen to your body, this is a newer drug . A lot of docs dont have a lot of experience with it long term. So dont be surprised if your questions are met with indifferent remarks.


diagnosed at 32.
HLA B27 Positive
Currently on Humira, Tramadol, and celebrex
Re: Struggling with Cosentyx [Re: ThreeG] #280430
05/23/18 12:14 PM
05/23/18 12:14 PM
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Northern California
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KarenB Offline
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I was on it for a year. Did not like it. I alsos felt I was being poisoned. I did not have horrible side effects, just tired and lethargic. And it did nothing in the way of helping. So I'm off now. Want to go back on Remicade, it worked so well for me. I was dx'd with MS and am told it's contraindicated so that's off the table now.


Live Life Man, Live Life
Re: Struggling with Cosentyx [Re: ThreeG] #280431
05/23/18 04:46 PM
05/23/18 04:46 PM
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ThreeG Offline OP
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I'll update that after the fourth loading dose I stopped having side-effects. I thought I was seeing some improvement, though I think it may have just been a lull. The bigger issue for me has been the long half-life, which is preventing me from having surgery and making me feel a little trapped. I suppose there's some possibility, too, that it is the cause of my current heart-rate issues. I'll find out more about that after wearing a monitor next week. On the positive, I have really been impressed by their customer care. They have bent over backward to get me samples while insurance approval was going through, and their financial program is far easier than Remicade's.

I'm sorry to hear about the MS diagnosis, Karen. Do they think Remicade brought it on? I seem to recall that was one of the things included in the frightening "black box" warning.

Re: Struggling with Cosentyx [Re: ThreeG] #280434
05/24/18 01:44 PM
05/24/18 01:44 PM
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Thomopro Offline
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Been on Cosentyx for 7 months with no side effects apart from an uptick in bowel activity during loading (which was honestly a welcome relief from the constipation battle - TMI). It did knock me out on injection day at first, I'm on 300mg, but all in all, it's been the best biologic I've had and I hope it keeps working for a long time.

I'd stick with it if your side effects have started to subside, but definitely listen to your own body.

Good luck!


Greg (49)
AS
HLA-B27 neg, MTX, Folic Acid, Belbuca, Cosentyx (failed Enbrel, Remicade, Humira). Diclofenac caused kidney failure, Hard breakup with Norco.
Re: Struggling with Cosentyx [Re: ThreeG] #280435
05/24/18 04:25 PM
05/24/18 04:25 PM
Joined: Apr 2014
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Silver Spring, MD, USA
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mutagen Offline
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I was on cosentyx 2 years ago for 6 months. I always felt like a zombie and felt sick during the whole time. Always tired and non-functional. I probably slept 12+ hours a day. I lost 20+ lbs during this time. I also developed serious memory problems during treatment.

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