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Thinking of Cosentyx? #284381 07/28/20 05:56 PM
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worldofme Offline OP
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So as you all know my history I've taken multiple TNF blockers without success for my ReA / NonRadiograpihc Axial Spondy whatever it is (all the same treatment). Enbrel caused severe side effects as well as Humira. My doctor now has recommended we try Cosentyx. I'm sick and tired of all the drugs causing side effects but my pain isn't improving at all.

Has anyone here can share me there experience with cosentyx? Are there a lot of side effects from this drug?

Re: Thinking of Cosentyx? [Re: worldofme] #284383 07/29/20 05:12 PM
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Jalf Offline
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Hello, I tried Cosentyx for a while, after Enbrel, to treat my arthritis and psoriasis. Unfortunately it did not work for me, but I was very optimistic about trying it. Apparently it's a revolutionary drug and primarily used for Spondyloarthritis and Psoriasis. It gave me acne and boils in a lot of very uncomfortable areas, that I could confirm was from Cosentyx, after it left my system. I would definitely recommend trying it though. There is no way to predict the outcome for each individual. Best of luck. I hope this is the medicine that works for you.

Last edited by Jalf; 07/29/20 05:13 PM.

Female, 30 yrs. Diagnosed with AS in 2008 - symptoms since 2007. Psoriasis & PPP since 2018 ∴ PsA ¯\_(ツ)_/¯
Re: Thinking of Cosentyx? [Re: worldofme] #284386 07/31/20 12:36 AM
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I haven't been on Cosentyx, but I have met many people that have. from my experience, it seems similar to the feedback I hear about biologics in general... when it works, it works really great. some people get side effects. feel free to join a support group meeting (mine is in Los Angeles, but these are all on zoom for now) and talk to others in real time https://spondylitis.org/resources-support/support-resources/support-groups/

I hope that helps.

if you do want to join our group, we meet on the 2nd sunday of the month at 2pm. we have a rheumatologist presenting at the august meeting.

Hope you find an effective treatment.

kindest,


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Thinking of Cosentyx? [Re: worldofme] #284407 08/20/20 11:40 AM
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Golanist Offline
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hi
I've been on cosentyx for about a year and a half after using humira + methotrexate and then enbrell with methotrexate.
i initially was on 150 mg /month which was ok bit then upped to 300mg/month and it has been absolutely WONDERFUL.
as with all of the biologics, it took several months to get to the full effect. today i have much less pain, am able to exercise more and in general feel much better.
i've had virtually no side effects.
Cosentyx has definitely been much much much better than the anti TNFs. for me.
Good luck and feel well.

Re: Thinking of Cosentyx? [Re: worldofme] #284423 09/10/20 04:19 PM
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I have the joy of being diagnosed with MS, Crohn's, and AS, but only the AS really bothers me (I think the other two dx were misdiagnosed AS), Anyway, I was frightened into trying biologics for MS when first diagnosed. Rebif and Copaxone injections both made me feel like I had the flu all the time and gave me hives so I switched to Gilenya. This biologic costs $65,000/year and makes me susceptible to every bug that goes around. I haven't had any MS relapses so my Dr says it's working, but I think I really don't have MS. I've chosen to wean off the Gilenya (which they say often causes a horrible relapse when going off, we'll see).

My rheumy is recommending starting Cosentyx or Taltz (anti-TNF blockers can cause MS relapses) but I think I'm going to try LDN and diet. I think that unless I'm desperate and really suffering biologics are just too scary for me. I've had really good luck so far with low/no starch diet, probiotics, and exercise - pain is mostly gone and manageable right now.

I'll be keeping an eye out here too for advice because I may be trying Cosentyx . . . and again, thanks to this forum is how I even heard of the no/low starch diet that has helped me so much. I know it's not for everyone but so far so good (and I lost that extra 20 lbs in a couple months without even trying :-)

Re: Thinking of Cosentyx? [Re: worldofme] #284455 09/25/20 09:14 AM
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mpc2012 Offline
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I've been on it for a year now and love it.


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