Spondylitis Association of America
Struggling with Cosentyx
Posted By: ThreeG
Struggling with Cosentyx - 03/16/18 09:12 PM
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!
Posted By: CBMom
Re: Struggling with Cosentyx - 03/16/18 10:35 PM
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!
Posted By: kjb
Re: Struggling with Cosentyx - 03/19/18 12:26 PM
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.
Posted By: awesomeman
Re: Struggling with Cosentyx - 03/19/18 01:04 PM
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.
Posted By: ThreeG
Re: Struggling with Cosentyx - 03/19/18 02:45 PM
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!
Posted By: awesomeman
Re: Struggling with Cosentyx - 03/19/18 03:19 PM
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.
Posted By: KarenB
Re: Struggling with Cosentyx - 05/23/18 12:14 PM
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.
Posted By: ThreeG
Re: Struggling with Cosentyx - 05/23/18 04:46 PM
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.
Posted By: Thomopro
Re: Struggling with Cosentyx - 05/24/18 01:44 PM
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.
Posted By: mutagen
Re: Struggling with Cosentyx - 05/24/18 04:25 PM
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.
Posted By: rumble
Re: Struggling with Cosentyx - 06/09/18 05:51 AM
I was on it for 4 months and gave it up after the gut issues were really bothersome. Rheumy had me take 3 months off Cosentyx and see if the med was actually causing the issues. It WAS the med and so I changed back the Cimzia I had been on prior to going to Cosentyx. (Cimzia was only stopped due to an infection and then a nasty foot fracture.) While on it, I lost 10 pounds I didn't have room to lose.
Posted By: kjb
Re: Struggling with Cosentyx - 06/15/18 05:43 PM
I was wondering how you are doing? Are you still on the Cosentyx? I am finally ready to give up on it. I will be calling my rhuemy to let her know, I want off.
Thing that scares me, is I have been through Enbrel, Humira and now Cosentyx. I am afraid shes going to tell me she cant help me.
The Cosentyx makes me feel like junk and I cant get past the exhaustion. Plus I have had IBS as long as I can remember and its been in overdrive since starting it. I wanted it to work so bad, I tried ignoring the side effects, but have decided that its not helping me enough to outweigh them. The worst thing was my hair fell out in two big chunks at the top of my head. Turns out approximately 30% of women complain of this, wish I had known that before I started it, at least it wouldn't have been such a shock.
Anyway, I hope that you are having better luck with it.
Let me know, I have been wondering how you were doing.
Posted By: awesomeman
Re: Struggling with Cosentyx - 06/25/18 02:06 PM
I had a similar issue with cosentyx. While it was effective for the disease. It was destroying me. I was so lethargic, I'd literally pass out at 3pm until the next day. I literally felt like I was being poisoned at best I felt like I had just woken up from general anesthesia. I lost 30 pounds in loading stage alone. I couldn't take the side effects. I still encourage people to try it, since everyone is different. But hopefully you don't feel as bad knowing others have had difficulties with Cosentyx. Since this med is knew I don't think docs are really so aware of the side effects yet. Like I said don't let your situation discourage others from trying it though. I know a lot of people on the psoriasis forums that are doing amazing on it.
Posted By: Anja
Re: Struggling with Cosentyx - 06/25/18 04:15 PM
I'm chiming in as an example of Cosentyx helping me without significant, unwanted side effects. I just started a couple months ago, so it's still early, but this is the best I've felt so far on any of the biologics I've tried. And I've tried several already (Enbrel, Cimzia, Remicade), none of which made much of a difference in pain/fatigue or disease activity for me. With Cosentyx, I noticed a difference in my fatigue levels by the fourth week of the weekly 150mg loading doses. My rheumatologist decided last week to increase my dose to 300mg injections per month (spread out to one 150mg injection every two weeks) since I did so well during the loading doses and then seemed to slide back into fatigue and pain before my first regular monthly dose.
I do get a bit of a headache and a slightly stuffy nose for the first couple of days after an injection, but I have no injection site reactions or mouth sores (like I did on Enbrel) or nausea (like I did on Remicade). Cosentyx can worsen IBD/IBS symptoms in people who previously have those kinds of issues, but I am one of the fortunate individuals who has not had to deal with significant GI complaints, before or after my AS diagnosis.
So, while I'm sad to see that Cosentyx has not helped a number of people who've tried it, I'm pleasantly surprised that I've had early improvement on it. Honestly, I was beginning to panic a bit about going through TNFs without much relief from them, so I'm excited that something seems to be helping finally! Happy to answer any questions people may have about Cosentyx.
Wishing everyone relief and strength.
Posted By: CBMom
Re: Struggling with Cosentyx - 06/26/18 09:27 PM
I had the same issue with Cosentyx - the 150 mg dose did not work. The loading doses, when I was taking Cosentyx weekly, worked very well. We were able to up my Cosentyx to 300 mg and that helped a lot.
I did have GI side effects but I also have IBD, so we expected them. I was able to keep the IBD under control with a different medication and so was able to stay on the Cosentyx despite having an IBD flare.
Cosentyx has provided me the most pain relief of all the biologics I've tried (including literally every anti-TNF - Enbrel, Humira, Remicade, Simponi, back to Remicade, Simponi Aria and Cimzia), so I think dealing with the GI side effects were worth it.
Posted By: seymour
Re: Struggling with Cosentyx - 06/27/18 02:08 PM
This article seems to suggest that IL-17 inhibition can actually cause more fusion for AS patients:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5318575/
The situation of bone in ankylosing spondylitis (AS) is more complex. Clearly the same systemic bone loss is obvious in these patients with the extreme frailty of vertebral bone. In sharp contrast is the situation in the syndesmophytes in AS. There the opposite is seen with ectopic new bone formation. In that case, excessive bone formation is the issue, resulting in the clinical spinal stiffness. In this context of AS, if, as discussed above, cytokines induce bone destruction, how can we justify the use of TNF inhibitors if inhibition of destruction and even induction of repair is the consequence of such treatment? Either there should be a contraindication or short-term use, unless there is another explanation. Inhibition of TNF has been registered for AS and PsA and this has been extended to IL-17A inhibition.
A simple understanding would imply that IL-17A and the other cytokines would then inhibit osteoblast differentiation and function. This is indeed seen when looking at whole AS bone.29 30 However, the effect is opposite when mesenchymal cells from different origin are incubated with the bone differentiation medium in the presence of IL-17A, alone and combined with TNF. Surprisingly, this leads to the formation of extracellular calcified bone matrix with an increase in alkaline phosphatase activation.31 TNF alone has such an effect, but this effect is synergistically increased when TNF and IL-17A are combined.
Looking at the various genes involved in osteoblast differentiation, the Schnurri3 gene was found to be of interest. This gene has been recently studied since deficient mice show an increased bone mass.32 Schurri3 function induces a bridge through which osteoblasts and osteoclasts communicate and its expression is synergistically increased when TNF and IL-17A are combined.33 When osteoblasts and osteoclasts interact physically as in whole bone, this results in an activation of osteoclasts leading to bone resorption and lack of repair. However, when such a bridge is not present, the very same cytokines will now induce new bone formation.31 In normal bone repair, this effect is seen in the periosteum to induce, for instance, fracture repair. In an abnormal situation, such as in the syndesmophytes when mesenchymal cells from vertebral ligaments are inflamed in the physical absence of osteoclasts, this will induce new bone formation.
If these observations are translated to the clinic, inhibition of IL-17A should reduce bone destruction in PsA and systemic AS bone. In contrast, the opposite effect should be seen in syndesmophyte formation. It is too early to predict if this can still be seen once the disease is fully established. This implies that the best results will be seen if such treatment is given early.
Posted By: Britefutr
Re: Struggling with Cosentyx - 07/05/18 05:06 PM
Interestingly my current rheumatologist skips the loading doses for both Simponi and Cosentyx. When I ask him, he said that so many patients cannot tolerate the loading phase of the drug that he does not do it now. It takes longer to get full effect from the drug but at least you can tolerate it. I had no issues with Simponi, it was the best biologic I had been on. It finally failed and now I am waiting for Cosentyx to be approved, I’ll let you know how it goes
Posted By: SouthernMoss
Re: Struggling with Cosentyx - 07/05/18 06:53 PM
Interestingly my current rheumatologist skips the loading doses for both Simponi and Cosentyx. When I ask him, he said that so many patients cannot tolerate the loading phase of the drug that he does not do it now. It takes longer to get full effect from the drug but at least you can tolerate it.
That's really interesting. I wonder how many other doctors are taking that approach?