COSENTYX alternative??: I have been on 300mg Cosentyx... - NRAS

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COSENTYX alternative??

Gilliancheche profile image
4 Replies

I have been on 300mg Cosentyx since Dec, I also take MTX which my consultant reduced from 20 to 10 as she felt my neutrophils were too low. While I am better than I was a year ago I still seem to be in a continuous flare. First my hips, then as that dies down my shoulders, knees or wrists start up. I have melanoma so cannot have anti TNF medication. I am worried the consultant will stop the Cosentyx as I don't want to lose the small improvement I have seen. So frustrating that the drugs take so long to take effect. My last steroid injection did not work either .

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Gilliancheche
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Downtime profile image
Downtime

I feel for you… I presume you have PSA which is helped by the Cosentyx. I do hope the consultant keeps you on this if it is working. I had a melanoma too . I have seronegative RA and now Polymyalgia too. I have had my MXT reduced to 12.5 because of mouth sores. and have been told I can’t have anti TNF s or JAKs . At the moment things are ok because I’m on steroids for the PMR but these have to be tapered so I just hope the lower dose MXt works as there aren’t any other options 😳

Skyeblue2 profile image
Skyeblue2

Have you discussed supplementing the Cosentyx with Sulfasalazine which I found was kinder to me than Methotrexate? I have migrating inflammation just as you have described. It's very difficult to manage and relentless too. I have both PsA (with Enthesitis )and RA.

My Consultant asked me to increase my 300mg injections from monthly to every 3 weeks and I understand that this is becoming more common with various Biologicals. If you have the option of speaking to your Specialist Nurse this may help you to explore your way forward. It's very frustrating and my best wishes to you.

Gilliancheche profile image
Gilliancheche in reply toSkyeblue2

Sulphasalzine was the first medication I tried, on its own, it had no effect. Then I went to MTX, then added in Cosentyx. Has the 3 week interval helped you?

Skyeblue2 profile image
Skyeblue2 in reply toGilliancheche

Hello G. I have Multiple Autoimmune Disease with PsA and RA being two of them. Because we are all unique and special it can make it difficult when sharing information regarding these conditions and medications because what works for one can also have poor outcomes for another. I have had a moderate response to 3 weekly injections of 300mg Cosentyx with Sulphasalazine (4 x 500mg daily) but due to other autoimmune issues I have to stop this regime and begin another biological but continue on the Sulphasalazine too with the hope that this time things will be better.

I certainly think that if you feel that you are having a moderate response on Cosentyx then exploring a reduction in duration is something worth exploring with your health professionals and maybe adding a DMARD too?

This is my own experience G and others on here have their own differing experiences, but don't give up exploring and challenging and good luck to you.

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