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#274939 - 06/11/16 10:20 AM Re: Cosentyx [Re: EricHampton]
kitkat203 Offline
Registered Visitor

Registered: 07/14/14
Posts: 70
Loc: Coral Springs , Florida
I also just had my second of my loading dose of Cosentyx. I have failed Enbrel, Humira, and developed severe Plaque Psoriasis from Remicade. Made my approval for Cosentyx eaisier ( haha)! I kind of feel like this is my last hope, I have been in severe pain for over 8 years and can only function on pain killers. It is very hard to keep going sometimes. Keeping my fingers crossed for all of us biologic failures! Will keep you posted.
_________________________
Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.

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#275012 - 06/19/16 09:48 PM Re: Cosentyx [Re: EricHampton]
CLA Offline
Registered Visitor

Registered: 04/29/14
Posts: 5
Hi All,
I find it kinda disheartening that Cosentyx hasn't seemed to give most of you much relief. I got my first injection today and after failing Humira, Cimzia, and Stelara as well as various types of pills I do not hold much hope for this medication. One of the pills I was on is Otezla which EricHampton mentioned. Worst drug I have ever been on. It had such bad side effects I was barely functional. I experienced debilitating nausea, fatigue and muscle aches and it was awful. I can't contribute to the discussion of what percentage of people respond to treatment, but I can add that my rheumatologist has told me that females in general do not respond as well to treatment. Not sure how true that statement is, but so far seems true for me. I have been on this journey for 4 years and have been getting worse especially in the last year. In the last few months I have started having issues falling asleep and feeling well rested even when I do sleep. The pain+exhaustion is making daily life much harder. Really need relief at this point and am quite tired of searching for something that will help. Guess I'll see what happens with Consentyx.

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#275016 - 06/20/16 12:53 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
From what I have seen I do not think it is sex based at all. There are many men who do not elicit any response from the biologics. CLA Enbrel is different enough though I would try it still. I can't deny the response from my rheumy that I read from her face which is I'll help you try it...makes the most scientific sense...but I don't think it's gonna help. Hope I'm wrong though gotta ride it out to 16 weeks and I'm sorry for being a downer 11 + with this and I remember how sad I was when the biologics did not achieve as they were promised.

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#275065 - 06/21/16 06:08 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
Originally Posted By: EricHampton
Thanks for info. Yes MTX is methotrexate. Guessing it may take a few weeks to get here then. I feel like it has been out long enough that I would expect to see more people talking about their experience with Cosentyx. I guess we are the unlucky few who don't respond to biologics or respond well. If it doesn't end up working maybe worth giving Actema a shot. I can't do Arava it made me so sick I was puking and didn't recover for a while. Not saying it's not helpful to some but staying away from MTX. I have a lot of gut issues since losing my gallbladder so that might be why those drugs even Sulfa makes me sick. Will post as soon as i have more info

Eric


Thanks Eric. How are you doing now on Cosentyx? Is it helping ?

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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#275185 - 06/30/16 05:39 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Hi Shipping I have not really noticed anything after doing the loading dose of 5weeks at 300 mg/ml (2 x 150 mg/ml) shots one per week however you are supposed to give it 16 weeks before deciding if it works or not. There is nothing else I am really comfortable trying at this point so giving it the full trial if rheumy agrees. I think Actemra and Rituxan are maaaybe worth trying but there is little data on these drugs helping Spondylitis and I am not really comfortable with the immune suppression caused by Rituxan if anyone has info on these drugs helping them or late response to Cosentyx I would be happy to hear it. Thanks guys.

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#275198 - 06/30/16 11:16 PM Re: Cosentyx [Re: EricHampton]
Steady1 Offline
Registered Visitor

Registered: 06/25/16
Posts: 3
My story is I'm a 53 year old male diagnosed with AS nine years ago - HLA-B positive. I have responded as well as could be expected on Humira but fatigue was still a big problem. Stiffness was better I'll admit but inflammation and calcification growth in spine was continuing. Oh ya, I can't forget the uveitis. Humira was mostly keeping that in check. Started Cosentyx two weeks after last dose of humira. I went to sleep for two hours after first cosentyx injection and when I woke up could immediately feel a dramatic decrease in stiffness. After two days I had more energy than I can remember in years. Worked hard in the yard and felt great. This lasted four days and then over each succeeding day old symptoms got progessively worse. I was pretty misirable by the next one week starter dose. Now five days later and it's been a hard week dragging into the office, coming home and crashing till next day. I wonder if in those first few days both Humira and Cosentyx were working together. Keeping fingers crossed Cosentyx will kick in after a few weeks.

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#275203 - 07/01/16 08:11 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
Since both Cosentyx and Humira work at different stages of inflammation(IL 17 A and TNF&#945; )I suppose that is possible.I am on double dose of humira. I will have to say it has helped me significantly in my fatigue, earlier by this time, I used to shut down, but not now. However, there is a lot more I want from it, I also have fusion in my spine(which makes things worse for me)
_________________________
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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#275605 - 08/06/16 11:56 PM Re: Cosentyx [Re: Steady1]
Steady1 Offline
Registered Visitor

Registered: 06/25/16
Posts: 3
Update: I'm now about 7 weeks into the cosentyx. My productivity has improved. I would say that fatigue has decreased. Also morning stiffness has improved. But lower back and periferal pain has increased. Muscle tightning around problem spots not as well managed as on humira. I still have aways to go before 16 weeks so I'm still hopeful. Tradeoffs sure but I don't want to go back yet.


My story is I'm a 53 year old male diagnosed with AS nine years ago - HLA-B positive. I have responded as well as could be expected on Humira but fatigue was still a big problem. Stiffness was better I'll admit but inflammation and calcification growth in spine was continuing. Oh ya, I can't forget the uveitis. Humira was mostly keeping that in check. Started Cosentyx two weeks after last dose of humira. I went to sleep for two hours after first cosentyx injection and when I woke up could immediately feel a dramatic decrease in stiffness. After two days I had more energy than I can remember in years. Worked hard in the yard and felt great. This lasted four days and then over each succeeding day old symptoms got progessively worse. I was pretty misirable by the next one week starter dose. Now five days later and it's been a hard week dragging into the office, coming home and crashing till next day. I wonder if in those first few days both Humira and Cosentyx were working together. Keeping fingers crossed Cosentyx will kick in after a few weeks. [/quote]

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#275767 - 08/22/16 03:42 AM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 362
Hi Steady,

Curious, how is cosentyx doing for you now? I know its not been a long time since you last posted, but please keep us posted on when you get chance. Hope it works for you. I am curious is your fatigue a symptom of low testosterone? Did you ever get that tested in past? if so, was it normal or towards low,may not be out of range but inclined towards low?
I recently had blood work done and it was 398. My rheumy said that if I can get that up,my fatigue will greatly improve. I am also on weekly humira and started gabapentin recently. I am hoping my fatigue improves greatly, so I can do things. I am looking forward to my appt. with my PCP who can work with me to get this up.

This is my.
Test Low Normal High Reference Range Units
Testosterone, Serum 398 348-1197 ng/dL
_________________________
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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#276134 - 09/23/16 06:54 PM Re: Cosentyx [Re: Steady1]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 481
Loc: Los Angeles, CA
If you are doing well on Cosentyx, will you please contact me? 818-892-1616 x231 or at Richard@spondylitis.org I'm looking for a speaker. Thank you! Rich


Edited by RAHMBA (09/23/16 06:56 PM)
_________________________
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.

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