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Re: Struggling with Cosentyx [Re: ThreeG] #280545
06/09/18 05:51 AM
06/09/18 05:51 AM
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rumble Offline
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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.

Last edited by rumble; 06/09/18 05:52 AM.

Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: Struggling with Cosentyx [Re: ThreeG] #280570
06/15/18 05:43 PM
06/15/18 05:43 PM
Joined: Aug 2017
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NY, USA
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kjb Offline
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ThreeG,

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.

Re: Struggling with Cosentyx [Re: ThreeG] #280630
06/25/18 02:06 PM
06/25/18 02:06 PM
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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.


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: Struggling with Cosentyx [Re: ThreeG] #280633
06/25/18 04:15 PM
06/25/18 04:15 PM
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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.

Last edited by Anja; 06/25/18 04:17 PM.

Female, early 30s. Dx AS July 2016, symptomatic 13 years.
Current meds: Cosentyx (150mg injections every 2 weeks) since April 2018. Tramadol (100mg every 6 hours) since January 2017. Celebrex (200 mg every 12 hours) since July 2017. Medical cannabis tincture/oil/vape/topicals.
Ineffective meds/ intolerance: Remicade (3 months). Cimzia (6 months). Enbrel (6 months). MTX w/ folic acid (2 months). Plaquenil (3 months). Prednisone (1 month).
Re: Struggling with Cosentyx [Re: ThreeG] #280649
06/26/18 09:27 PM
06/26/18 09:27 PM
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NJ, USA
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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.

Re: Struggling with Cosentyx [Re: ThreeG] #280655
06/27/18 02:08 PM
06/27/18 02:08 PM
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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/

Quote
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.

Last edited by seymour; 06/27/18 02:18 PM.
Re: Struggling with Cosentyx [Re: ThreeG] #280704
07/05/18 05:06 PM
07/05/18 05:06 PM
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Posts: 459
St George, UT
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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


Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...
Re: Struggling with Cosentyx [Re: Britefutr] #280708
07/05/18 06:53 PM
07/05/18 06:53 PM
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Originally Posted by Britefutr
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?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
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