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#273416 - 02/27/16 05:54 AM Cosentyx  
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EricHampton Offline
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Hi guys,

I am HLA-B27- and have failed Enbrel, Humira, Remicade, Simponi ARIA, Cimzia, and Stelara. I also gave Xeljanz a shot but noticed side effects right away which lead me to discontinue use. I have had AS for 10 years affecting my Lumbar/Cervical spine, enthesisitis in all my large joints, and limited involvement in my sacral area. I am presently taking pain meds and low dose Sulfasalazine, combined with a low starch diet. I get good insurance back again in April and would like to give Cosentyx a shot. I have not seen much about it here and was wondering who is taking this med. I am especially interested in those who have not had any response to the Anti TNF's. I am also interested in Otezla(Apremilast) however since i failed Stelara, i am less optimistic about this one. Please let me know if you guys have anything to add.

#273457 - 03/03/16 09:30 PM Re: Cosentyx [Re: EricHampton]  
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mpc2012 Offline
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I am about to switch from Enbrel to Cosentyx to see if it helps. I will let you know as soon as I start it and give it some time to work. It has been approved for AS and is suppose to be more advanced than Enbrel or Humara.

#273529 - 03/10/16 01:25 AM Re: Cosentyx [Re: EricHampton]  
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EricHampton Offline
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Thanks I am hoping that my rheumatologist will allow me to give it a shot. I am looking forward to hearing how it has helped you.

#273739 - 03/25/16 04:04 PM Re: Cosentyx [Re: EricHampton]  
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sarahr28 Offline
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I have failed almost all of the drugs you listed too. I started on Cosentyx on January 4th. I took the starter pack which included a 150mg shot weekly for five weeks, then every four weeks after. At about weeks 3-4 I was feeling pretty good. Very hopeful. Then as I had to spread out my injections by four weeks, I felt no difference. I believe I've had a total of 6 (or 7) shots. I'm still hanging onto hope that it will start working better because the studies show that results can continue happening for up to a year according to my Rheumatologist. I see him again next week. I'm discouraged at this point.


39 year old female. AS. HLA-B27+. Diagnosed March 2013 (Though chronic pain started a few years before that). Unresponsive to many TNF-Inhibitors (Enbrel, Humira, Cimizia, Stelara, Otezla, etc.) Steroid dependent. Began Cosentyx January 2016, minimal results so far.
#273753 - 03/27/16 01:54 PM Re: Cosentyx [Re: EricHampton]  
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Kelly669_107 Offline
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I just received my first injection last week. While Simponi worked wonders at first, if wore off-despite getting approval for injections every 3 weeks instead of every month. I didn't see any relief from Humira, and switched back to Simponi after about 4 months. Combined that with leflunomide but stopped taking this after 5 months due to way too many side effects(including hair loss, skin growths-on my face no less-, stomach issues, and congestion).

I'm hopeful about Cosentyx since it's the only biological out there that is not an Anti TNF, but have had nothing but bad experiences with Novartis in trying to get my next shipment. I hope there customer service as the drug gains momentum. Their incoming calls show up as no caller id available, the hotline sends you in circles, and it's been difficult to get in touch with a real-person. Am hoping this will get better as the official approval comes through with my insurance company, but am beginning to question moving over.

Will provide updates as I can since Cosentyx is new to all of us, and the best recommendations come from the actual users! With any luck, I'll receive my next shipment in time to take as scheduled!


46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate
#273937 - 04/09/16 11:11 AM Re: Cosentyx [Re: EricHampton]  
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Kelly669_107 Offline
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Update on the Cosentyx.
Took third shot on April 5. Thought I was feeling a little better and bumped prednisone back to 40 mg from 60 mg for two days. Paid the price yesterday and am back up to 60.
Was so hopeful that this would start working sooner, but am willing to wait atleast until I finish the first 5 weeks.....meanwhile, still riding the prednisone crazy train ride.....its just too much for me to take.....so irritable, not sleeping and feel like I'm not in my own body......
Bad flare-ups suck.

I'll step down now😜

Still hoping to see more posts from Cosentyx patients! Would love to know how others are making out.


46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate
#273938 - 04/09/16 11:13 AM Re: Cosentyx [Re: sarahr28]  
Joined: Oct 2014
Posts: 31
Kelly669_107 Offline
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Hi Sarah,
Any updates on how you're making out with the Cosentyx? I want to be hopeful, but not there yet after three injections😁
Thanks!


46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate
#273965 - 04/12/16 04:19 PM Re: Cosentyx [Re: EricHampton]  
Joined: Feb 2015
Posts: 4
sarahr28 Offline
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Rochester, MN
Hi, Kelly,

I'm not seeing any amazing improvements either. My doctor just agreed to double the dose and try that for two more months. I take that dose next Tuesday. I'll let you know how it goes. I've been through the starter pack and two more months. Prednisone seems to be my only hope too, sadly.

Sarah


39 year old female. AS. HLA-B27+. Diagnosed March 2013 (Though chronic pain started a few years before that). Unresponsive to many TNF-Inhibitors (Enbrel, Humira, Cimizia, Stelara, Otezla, etc.) Steroid dependent. Began Cosentyx January 2016, minimal results so far.
#274135 - 04/21/16 10:26 AM Re: Cosentyx [Re: EricHampton]  
Joined: Oct 2011
Posts: 50
EricHampton Offline
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EricHampton  Offline
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Hi guys. My rheumy agreed that it made the most sense to try cosentyx. CVS specialty called me 3 weeks ago and told me two days to get there and I still haven't gotten it. I called doctor's office a couple of times and last week got called into sign form for their patient assistance program or their version of one. I wish I could have done that when I was at the doctor's office 3 weeks ago. I am trying to be hopeful as it would not have gotten this far if it did not offer a significant benefit to many people. This one might actually be better for spondylitis unlike the IL- 23 drugs which work on the skin better then they do for AS. Anyway should be here soon I hope. It is really hard to be optimistic when I have failed everything but painkillers and steroids. Is there a difference between Methylpred and normal pred steroids?

#274181 - 04/25/16 01:23 AM Re: Cosentyx [Re: EricHampton]  
Joined: Oct 2014
Posts: 31
Kelly669_107 Offline
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Delco PA
Hi Sarah,
Ugh, was hoping for better news. However, all the information I've seen regarding results from the studies were at the 4 month mark_but I was hoping for something by now, as I just finished the 5th started dose. Interesting that you and your doctor have decided to double the dose-even more surprising that your insurance company is paying for it! Even the prednisone is not doing as much as I'd like t the moment ;-(. Thanks for letting us all know how you're making out!


46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate
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