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#276489 - 10/30/16 02:04 PM Re: Cosentyx [Re: EricHampton]
CLA Offline
Registered Visitor

Registered: 04/29/14
Posts: 5
UPDATE: It is my 20th week on Cosentyx. It is a tremendous help with the fatigue but I don't think it helps much with the pain. That being said at least it does something so I'll stick with it for as long as possible.

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#276587 - 11/05/16 03:49 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 347
Hi All,

I am going to start with cosentyx, if my insurance approves it. Please keep sharing your experience with cosentyx. It will be very kind of you. This will be my second biologic, and I am little worried about it, because I have to let go humira which was not working well on me, but I am not even sure if cosentyx will be better or worse. I could not live with the knowledge that another biologic may work wonders on me, and now I am worried that it may be a bad move. Especially given the fact that I am fusing all over my joints like ice. Got my SI joints MRI yesterday which say they are completely fused. I wish the radiologist is wrong, and it is a very long bad dream. Which it is not.

Thanks for your support.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276588 - 11/05/16 04:14 PM Re: Cosentyx [Re: Steady1]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 347
Originally Posted By: Steady1
UPDATE: I'm about 15 weeks into Cosentyx now. I've been making steady progress. Going four weeks between injections made me worried but it worked OK. Cosentyx has also been superior in the fatigue category. There is still pain in all the regular places but it's been lessened. Morning stiffness is less than before. Two weeks ago I felt like doing yard work again. Worked in the morning, took a nap and went again for three hours. Trouble was I over did myself and got a bad muscle strain. I've got to slow back into more activity next time. Cosentyx is not the final answer but given the improvements I'm glad I made the change. Hope this helps.


Hi Steady, my case is almost like yours. Like you humira was good for my inflammation, stiffness, but not my final answer. So in search of greener grounds I decided to take the leap of faith, and tell my rheumy I want to try cosentyx. I will be very happy if I can do an hour of yard work. Currently I cannot even bend. And Yes I do have calcification all over my spine like you and SIs are fused.

Interestingly you said:

"My uveitis seems to be better controlled superior to Humira. "

My doctor told me other wise. Also the humira seems to be the only biologic approved for Uveitis by FDA. But I am happy that it does help you with uveitis, no matter what the FDA says. I too would settle for cosentyx if it works better than humira. I have no plans for changing biologic again. I think I can now understand what it means to accept AS(i.e. I will never be disease free, I kept denying it from last 1 year, but it did not budge down from damaging my spine and SI joints.) Interestingly one thing which I have noticed is my short span of attention to anything I do, even writing these posts, which I sometimes write multiple times, instead of one single post,as I just did now. Anyways that is least of my problems. best of luck.


Edited by Shippingnews (11/05/16 04:14 PM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276696 - 11/14/16 02:54 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 347
My pharmacy denied cosentyx, this is really bad
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276697 - 11/14/16 03:02 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 347
what are my options? please advice. I thought it would save my life..but guess the insurance company think its better to not have to spend more on this person as he is not getting well

Updated: It seems my doctors office sent my diagnosis code as Rheumatoid Arthritis, will be going to my doctors clinic and request them to file an appeal with correct diagnosis code


Edited by Shippingnews (11/14/16 03:46 PM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276845 - 12/09/16 03:53 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 347
*bumping this up.
Anyone else have anything to share about cosentyx?

Thanks.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277234 - 02/04/17 03:52 PM Re: Cosentyx [Re: EricHampton]
KarenB Offline
Registered Visitor

Registered: 09/01/06
Posts: 1504
Loc: Northern California
I have been approved for Cosentyx and should get my first delivery soon.(after much back and forth with docs office, specialty pharmacy, and insurance) Then the "injection training" I will let you know how it goes. I was on Remicade for a few years and did not realize how much it helped until I was off of it....
My Rhuemy has a few patients on Cosentyx for A.S. and she told me that it is working well for them and that it takes some longer than others to feel results. My understanding is that Cosentyx attacks IL-17 which is different than other biologics. I'll keep you posted on my experience.
_________________________
Live Life Man, Live Life

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#277794 - 04/19/17 05:26 PM Re: Cosentyx [Re: EricHampton]
CB in CA Offline
Registered Visitor

Registered: 02/20/03
Posts: 2840
Loc: Huntington Beach, CA
Joining in late to this discussion.. I wonder how you have all done this past year on Cosentyx.

My Rhuemy told me yesterday that despite not having any flares these past 7 years and not much pain, my spine xrays from last year to now prove something different. I was advised to start Enbrel. I wasn't expecting that and gave a quick debate and questioned any increased cancer risk blah, blah, blah and she offered Cosentyx because "I have less chance of getting whatever I am afraid of getting" from Enbrel...or something along those lines. (my mind was a blur from the discussion as this was not expected) Then she spoke about Taltz which sounds like a new sister drug to Cosentyx and then a 2 year double blind study being done at her office. I asked if I could be a part of it and she said yes if I qualify. She didn't offer it to me until I asked. So, I don't know what to do.

Interestingly, the paperwork for the study says its for, 'Radiographic axial spondyloarthritis, formerly known as ankylosing spondylitis.
Has the name been officially changed?

Any advice is appreciated and I hope to hear more about your results from Cosentyx.
(Karen - Long time since we chatted!- Hope your doing well)
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