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Trying to stay positive despite this illness

Hello new friends! Thanks for reading and being here!

I was diagnosed with AS April 2020 and it's definitely been a life changer.

Everything started in January of last year with terrible headaches and body aches that landed me in the ER. After several visits with my PCP, xrays, CT's, and multiple blood tests, I was found to have positive HLB-27 gene, positive ANA, and inflammatory markers were all elevated. I was referred to rheumatology and thankfully got in within about a month. At my first visit and after the multitude of questions she diagnosed me with spondyloarthritis.

I have tried a few different oral medications. Currently taking sulfasalazine and naproxen daily. Have tried humira but had flu-like reaction and felt terrible for weeks after only one injection. I was afraid to take this medication again after reading more about it . My inflammatory markers have stayed elevated for over a year and a half now. Can't seem to get them in normal range even with the medication. My rheumatologist now wants to put on me on a new injectable medication Cosentyx. Has anyone tried this medication? I'm nervous about taking biologics.

Aside from the everyday fatigue, back, hip, knee, and wrist pain, the worst part is constantly getting sick. It was not well communicated when I started the sulfasalazine that it is an immunosuppressant (I guess like most of these medications are). So I feel like I'm constantly sick. I've been dealing with chronic sinus and upper respiratory infections. Fevers that last for weeks. Even more body aches and fatigue that makes it hard to get out of bed.. When I miss work, I'm out for week(s) at a time because it takes me forever to recover. Then is seems like a vicious cycle because when I get sick they have me stop the sulfasalazine and then I have a flare up. Does anyone else experience this? It definitely takes a toll on you mentally because you feel like no one understands what you're going through.

I'm so appreciative and glad I found this community! I am trying to do what I can to have a more positive mindset despite my chronic illness.

  1. Welcome to our community, .

    Sorry to hear that you've had some trouble finding the right medications for you. I know that there are definitely some community members who have had some experience with Cosentyx. I hope that they will chime in on the conversation soon. In the meantime, we do have some information available on it, which you can find here:

    Also, I personally do not have AS, so I can't imagine what it is like to go through what you're going through. It sounds like dealing with the endless cycle of feeling unpredictably well and unwell is draining and exhausting. I do hope that you are able to connect with others here who truly understand what it is like to go through such a difficult experience. It may take some time for others to jump in on the conversation, but I'm confident that there are others who can relate.

    Thanks for posting and joining our community. So glad that you're here!
    - Cody (Community Moderator)

    1. Thanks Cody!

  2. Hi and welcome to the community, so glad that you found us!

    Sorry to hear that you have had a bit of a rough time, but you are definitely not alone as I think most people with AS go through a similar start to our journey with this condition!

    I can really relate to the annoyance of getting ill so easily it taking a while to get rid of; I'm actually currently a bit run down with a cold that's been giving me grief for a week and doesn't feel like its going away anytime soon! My rheumatologist has advised me to stop taking my immunosuppressant medications when I do feel ill though, have you been told the same?

    I can't speak for Cosentyx as I have never been on it but I have been on a biologic injection called Eternacept (or Enbrel as it is called outside of the UK) for over two years and it has helped me so much. I know the side effects booklet can be daunting at first but I know a lot of people who have benefitted a lot from being on them - it's just about finding which one is right for you and your body.

    Keeping a positive mindset is definitely the right attitude for taking on AS and if you have any questions please feel free to ask away, we are here to support you!

    All the best,
    James (Community Member)

    1. Hi James! Thank you for the response and encouragement. Hope you are feeling better! Thankfully I started feeling well enough to take my first Cosentyx injection last Saturday. So hoping to see some improvement in the coming days.

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