Cosentyx miracle drug?

Posted , 8 users are following.

I have AS and been on Enbrel with great success for many years. During some flare ups I was switched to other biologists but always came back to Enbrel. A couple of years ago I started to get a lot of pain and inflammation in my feet that would only go away with a step down treatment of a very high dose of prednisone. The pain would stay away for a month or so and then Imwould have to start again. Now, the pain in my feet only stays away if I stay on the high dose of pred. My doc tried adding Sulfasalazine but that did not help. Now she wants to switch me Cosentyx. Anybody have any experience with Cosentyx? She had also suggested adding Methotrexate but I hate to add that medication. 

Also, anyone ever have this foot issue?

0 likes, 12 replies

12 Replies

  • Posted

    Hi,

    ?  My doctor is considering putting me on Cosentyx right now.  Unfortunately I am dealing with other medical issues right now which may put the Cosentyx off for a while.  I was reading the literature on Cosentyx and found it quite interesting.  I was struck by the fact that the claims for Cosentyx' success in clinical trials was quite modest.  I don't have the numbers in front of me right now but it said something like 60% of the people in the trials got 25% relief.  This may not be exactly correct but the claims did not seem to be too radical.  I'm not sure if this is typical for the biologics but I was expecting to see more dramatic results.  Maybe that is just the nature of AS.

    ?  I also have developed pain in both feet although maybe not as bad as yours.  Mine is a throbbing, very annoyng pain in both feet.  In the left foot it is on the outside of the foot on the side.  In the right foot it is in the ball of my foot around the second toe.  Again, though, I don't think it is at the level of pain that you describe.  My rheumy thinks it is simply osteoarthritis although I'm suspicious of that.  Hope you find some relief.

  • Posted

    I've just started on Cosentyx, I have to take 2 shots a week for 5 weeks, as initial dose. I have just taken the 4th shot this week. I have been feeling good, until this last shot. Today my legs and feet hurt. My lower legs feel like they are going to explode. Also, after taking the 2nd shot, I had horrible head aches. They told me to take Alene 30 mins before the injection. I'm hoping I go back to feeling better, after the 5th shot. 

    • Posted

      Please let me know of your progress. What were you on before?
  • Posted

    I have been on Humeria, Embrel, Simponi. Humeria cause diverticulitis. Embrel I started having the sternum pain, arm pain. Simponi I was taking ibuprofen twice a day for stiffness. The doc didn't like that I was still having stiffness. I will let you know how things go.

    • Posted

       how have you been doing on the Cosentyx? I have not started it yet but I think I am going to soon. The methotrexate that I take is just awful and all though Enbrel  has worked for me for the last 15 years I think it just does not work well anymore.
    • Posted

      I've been doing pretty good. I have finished the loading dose and last night I took my first month dose. I haven't been taking ibuprofen much since starting the Cosentyx. My left heel has been a little painful since I finished the loading dose and left lower ribs have been tender. But hopefully that will end with  the monthly dose of 300mg. 

  • Posted

    hi am on it for the last few months 

    I had big hope,s for it .the frist four weeks it was helping after that i have never been worse to be honest .I am 33 now I have this dam thing the last 15 years its a course from hell .The prednisone works good for the inflammation .Ya feet plenty of trouble and my  knees and every thing else 

    • Posted

       What else have you been on? I have been on Enbrel for the past 15 years and have done really well. Just up in till this last year or so when my feet became a big issue. 
  • Posted

    Hi What are all these drugs, you're so lucky these days, had AS for over 50 years and all l was offered was indothamine which ruined my stomach lining. Have total spinal neck ribs pelvis hips fusion, and take nothing......

  • Posted

    Hi Everyone!

    I just found this discussion while looking to see if anyone else gets tired and flu-ish the day or two after injections. I do, but that is really the only complaint I have. I've been diagnosed with A.S. for 11 years, and have been through hell like most of you have, I'm sure. I was originally started on Enbril, with great success! After being on it for 9 mos., my insurance decided that the medication was considered too experimental and denied me. So, I had no other choice to stop it abruptly. The pain and stiffness came back with a vengeance! Worse than I ever had. Put me out of commission completely. Basically bed ridden and taking all kinds of pain meds. Finally, after fighting with the ins co., for 4 mos., they finally agreed to have my doc to put me back on it. It didn't help at all. We waited for 6 mos, because it takes awhile to build up in your system. The way the doctor explained what happened was, imagine driving down the highway at 70 mph and throwing your car in reverse. That's what happened to me when I stopped Enbril. So, we decided to try Humira. Was on it for about a year, but it helped very little. So, tried Enbril one last time since I had such a positive response the very first time. After getting Pneumonia a few times, being on both Humira and Enbril, I decided no more biologics. Well, after moving, and being in a new area, with new docs, my new Rheumy talked me into trying Cosentyx. I was reluctant because of getting Pneumonia so many times, and with the exception of first trying Enbril, I didn't get much relief if at all. But, she told me how well it has been doing in A.S. patients, as well as patients with P.S. So, I did the loading dose and noticed an immediate difference as soon as I started it. Literally within days! I have been on it for just a little over a year, and doing fantastic on it. I have not had Pneumonia once, and only started to get a cold and the flu once each, and I fought both off with ease. Cosentyx has been my "WONDER DRUG"! I have been able to have a quality of life again, and tapered down my pain meds, and off all anti-inflammatories. Like I said, the only one little negative was feeling fatigued and achy the day or two following my injections. So, if you are on the fence whether to start it or not, I say GO FOR IT! I pray that it works for you, the way it works for me! Has anyone here been on it yet? What are your experiences? Would like to know if anyone else has experienced the same results as I have.. Well wishes to you all..

  • Posted

    I’ve been on Humira and Methotrexate for 6 months... I still need the prednisone and have had a terrible while on an RV trip for the past month... before that I was doing great!  They all want me off the prednisone, I’m down from 10mg a day to 5 on a long taper but I’m afraid my worsening pain/stiffness is from decreasing that... hope you find the magic combo!
  • Posted

    Hi. I am having the same problems with my feet. Right foot to be exact and allot of swelling around the two smaller toes. I’ve been avoiding all drugs until this year and just taking Naprosyn but not helping. 

    Haven’t been told about Enbrel but maybe not available in Australia. 

    What were your symptoms when you to take Enbrel?

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