Saturday, April 23, 2016

why I blog? just my struggle and story! hoping to help someone!

You may wonder why I blog about this life-long Ankylosing Spondylitis (AS) journey that I’m on.  I didn’t just start right when I was diagnosed.  It took me some time to understand what I had just been told and also time to learn what exactly AS was.  I couldn’t even pronounce it!  Why do I have to deal with this for the remainder of my life?  There were so many questions and still to this day, questions seem to arise.

My blogging started simply because there were a few of us AS folks who had “found” each other via the internet.  We all seemed to have the same story to tell, but yet in some aspects our stories varied.  The disease itself may vary, but we were all suffering and finding it hard to locate correct information about AS.  We began sharing and even blogging on the same topics.  Even when we all had the same topic, it seemed our “blogs” were different and helpful!

During that time of “group” blogging, I realized I needed to share my personal journey with AS.  I wanted to help spread knowledge and information about a disease that I deal with daily.  A disease that was misdiagnosed at first and one that seems to be on an aggressive path.  A disease that stopped me dead in my tracks!  I realized the more knowledge that I gained, was exactly how I could “get ahead” of AS and be my best advocate!

It’s been over 10 years now since I was first diagnosed and wow I've learned a lot!  I’ve also been through a lot!  TNF medications were a must at slowing the progression of AS.  If you slow the progression, it will help with inflammation and pain.  My first TNF was Humira.  It wasn’t doing what it needed to do, so we added Methotrexate (MTX).  OK—a pause here—methotrexate is NOT fun!  The hangover that it gave me was horrific! But it was needed.  It was decided after several months that Humira wasn’t working, so we moved on to Enbrel (still on MTX).  After being on Enbrel for several months there was still no change.  There seemed to be no slowing and nothing working on my aggressive AS.  We moved to IV infusion, Remicade.  All the sudden there was improvement.  Now, don’t get me wrong here—there is NO cure!  But, this drug seemed to suddenly slow the disease and give me a few good weeks a month to just “do life”.  I had to stop the MTX, because of side effects and was switched to Arava daily.  Then it starts happening, AS fights as hard as I was and starts breaking through the monthly remicade treatments and the “good days” were becoming fewer and fewer.  My rheumy would up my dose of medication and it would work!  We continued on this journey for about a year until my Rheumy decided my AS was becoming resistant and the dosage I was on was too high.  Actually my infusion nurse had already commented on how high the dosage was for my body weight.  So, it was on to my last TNF, SimponiAria infusion.  It seemed to be doing its job, then all the sudden a MAJOR allergic reaction!!!  We had to find out what caused my allergic reaction and so all meds were stopped and slowly added back.  The reaction only happened the day after the SimponiAria infusion so my doctors decided it best to stop the medication.  I was devastated!  What now? 

I went on an older drug called Acthar.  This is a basically a steroid injection and we were just using this to “buy time” as we wait on new drugs to come out and to hopefully get the AS under control.  Acthar wasn’t really doing much to the AS, but it certainly was doing a LOT to my body—talk about side effects you do NOT want—the moon-pie face and weight gain!  Yes, I’m still on Arava and I’m really not sure it’s doing a thing! 

Finally the drug we’d been watching was approved and not just approved, but actually the first drug to come out approved and tested on AS patients, Cosentyx.  I’m currently going through the approval process and waiting…impatiently!!!  I need this medication!  I need something!  I will keep you posted as to how Cosentyx works for me.  I had to stop the Acthar.  I wanted to stop Acthar!  I wanted Cosentyx.  I wanted something that would slow this horrific disease!  Cosentyx is a new type of drug and hopefully, I’ll be on it with-in the next couple of weeks.  It’s odd to be begging…wanting…needing medication, but the last several months have been bad.  The AS is getting worse and there are less “manageable” days and more days where the AS wins. 

So, why do I blog…to share my journey in hopes that it helps others with AS, and also to share knowledge of what is happening to me.  Maybe my journey will help someone who has just been diagnosed or maybe someone who is where I’m at, wondering what next.  How this disease has affected my life with surgeries and medications.   It’s LIFE that we live with AS and its LIFE that I will fight, but I will always stay as positive as I can and not let AS win!
You can also check out this site for more blogs from me and others!
AS has my body, but NOT me!!!


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  2. Has anyone applied for disability? If so how long did it take to get approved? I've been having AS since 15 years old, I was just dignose last year at age 35. I'm on Iv infusions now but it only last three weeks then I'm back hurting again . I have infusions every six weeks.

  3. You are doing great job by giving hope to the people who suffer from the diseases like this and thought that they are never going to be cured. Thank you for sharing an inspirational blog.

  4. Dear Meloni,

    I'm a fellow 'chronic incurable disease sufferer' (although I have faith for complete healing) and would love to connect with you. Could you please send me your email address? Mine is :)

    Hope to hear from you soon!


  5. Hi I'm a 28 year old male who was diagnosed when I was 22 after my ankles swole to the size of soft balls. Now I'm older my back, shoulder, hip and whole spine kill me and I'm not sure how to fight this without meds when even my bowel are very much effected with diverticulitis and hemroihds. Either way thanks for any support. Eating meds and back to work I go