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#519080 - 10/04/18 04:34 PM Cosentyx. Has anyone had success with this?
Cre8tive1 Offline
Lurker

Registered: 10/16/16
Posts: 1
Hi All, I just received my first shot today.

I was diagnosed with AS in mid 2015. I've had it for 25-30 years and despite my efforts with numerous doctors, Physical Therapy, etc. it went undiagnosed until I decided to dig through my blood tests to see what was abnormal, and what type of specialist would treat the symptom.

The Rhuemy figured it out my first visit, but did not confirm until my labs came in 2 weeks later. HLA B27 positive. Insurance denied cimzin, recommended humira. I declined because of the side effects.

I've read voraciously over the last three years on AS, no and low starch helped but not enough. I was a very active young and older adult until 2014. I thought all of my exercising was making my body so miserable so I took a break. I got worse Much worse.

Last month the Rhuemy told be about cosentyx. The side effects don't seem as bad as the other alternatives/side effects. She said it would be a game changer. I am hopeful, but wonder if anyone else has had success. I am in the advanced stages of AS. Apparently my level is rare according to the doctor, especially since it was never diagnosed. The one thing I don't have with AS, is irritable bowel or digestion issues. I've had everything but that. I'll post in a week or so if I have any success/side effects etc. Any thoughts would be appreciated. Thank you for reading my ramble. 😀

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#519082 - 10/05/18 05:00 AM Re: Cosentyx. Has anyone had success with this? [Re: Cre8tive1]
Frederick Online   content
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 292
MY case is much like yours only I have nerve damage (neuropathy) to the nerve that runs from the spine and down the legs. I first showed signs that something was wrong in 1959 at the age of twelve. It was some six years latter that A.S. was finally diagnosed. I have had all the usual treatments some very useful but most useless. Now at the age of 72 my condition is as bad as ever. Best of luck with the cosentyx and let us know how you get on with it. I don't believe in so called alternative medicine or any special diets for A.S.

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#519104 - 10/15/18 12:46 AM Re: Cosentyx. Has anyone had success with this? [Re: Cre8tive1]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4494
Loc: NE Oklahoma
Good luck with Cosentyx. Not having any GI issues might make it go easier on you. I tried it and had to give it up as it bothered my GI system a lot. I have a history of irritable bowel, but nothing inflammatory in the gut. From the first shot, it gave me diarrhea. Through the loading doses, that gradually changed over to constipation. When I mentioned it to rheumy he thought I was just dealing with a flare up of something.

Basically, it didn't seem he believed me. So he had me stop it after 3 months of treatment and to wait 3 months for it to get out of my system. By 2 months later, my system was almost back to normal. By 3 months, it was. At that point, I went back to Cimzia. The Cosentyx did work, but it was at too great a cost in side-effects.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

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