Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Cosentyx. Has anyone had success with this?

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. 😀

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.

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.

Thanks for the replies. I have had my third dose, and it is actually helping my lower spine which has been the worst of all my problems all of these years with disease. I get a little nausea the first 8 hrs after the shot, nothing major but it tapers off. I don't notice relief in any other areas, ribs, neck, ankles etc. But it takes the edge off most days, not all. I would say 40 percent improvement so far.

Typically a car ride for an hour or two would just be awful for my lower spine the next day. I can happily say I just traveled up the whole state of California & back, by both car and plane, from San Diego to the Oregon border, and I didn't have too much issue with my spine. It seemed miraculous. I get car/air sick, but was able to wear the ear patch without any interference from the medication. It was GREAT.

just got my first dose of cosentyx yesterday. Not doing the loading dose and my meds are free. that copay card is like a miracle. thank god for our country.

Glad you are both getting some good from Cosentyx. Just shows that not all drugs are good for everyone. Many flavors for many different people.

I've been on the cosyntex now since early november.
since i had two free samples from the rheumy i took a couple of loading doses and now am going to go on month two with my second regular injection.

The drug works well and no gut issues. so thankful I dont have to waste my time and money on natural methods that dont work.

So another one on this site that agrees with me about "natural methods"