Why I weblog? Just my warfare and tale! Hoping to help someone!

You might also marvel why I blog approximately this existence-lengthy Ankylosing Spondylitis (AS) adventure that I’m on.  I didn’t just start right once I turned into identified.  It took me some time to apprehend what I had simply been advised and also time to learn what precisely AS become.  I couldn’t even pronounce it!  Why do I need to cope with this for the the rest of my existence?  There have been so many questions and nevertheless to at the present time, questions seem to arise.

My running a blog started out certainly due to the fact there have been some folks AS people who had “discovered” every different through the net.  We all appeared to have the same story to inform, however yet in some elements our tales varied.  The disease itself may range, however we were all suffering and finding it tough to discover correct facts approximately AS.  We commenced sharing or even running a blog at the identical subjects.  Even when all of us had the identical subject matter, it regarded our “blogs” were special and useful!

During that point of “institution” running a blog, I realized I had to share my private journey with AS.  I desired to help unfold expertise and information approximately a ailment that I deal with day by day.  A ailment that become misdiagnosed at the beginning and one that seems to be on an aggressive direction.  A disease that stopped me dead in my tracks!  I found out the greater know-how that I gained, was precisely how I should “get ahead” of AS and be my pleasant propose!

It’s been over 10 years now on the grounds that I changed into first diagnosed and wow I've discovered plenty!  I’ve additionally been via lots!  TNF medicines were a should at slowing the development of AS.  If you sluggish the development, it'll help with infection and ache.  My first TNF became Humira.  It wasn’t doing what it needed to do, so we delivered Methotrexate (MTX).  OK—a pause right here—methotrexate is NOT fun!  The hangover that it gave me turned into bad! But it became wished.  It was determined after several months that Humira wasn’t working, so we moved on to Enbrel (nevertheless on MTX).  After being on Enbrel for numerous months there has been nevertheless no alternate.  There seemed to be no slowing and nothing working on my competitive AS.  We moved to IV infusion, Remicade.  All the surprising there was improvement.  Now, don’t get me wrong right here—there may be NO remedy!  But, this drug seemed to all of sudden gradual the sickness and give me some correct weeks a month to simply “do existence”.  I had to forestall the MTX, because of side outcomes and was switched to Arava daily.  Then it begins occurring, AS fights as tough as I became and begins breaking via the monthly remicade remedies and the “top days” had been turning into fewer and fewer.  My rheumy might up my dose of medication and it might paintings!  We persevered on this adventure for about a yr until my Rheumy determined my AS became becoming resistant and the dosage I was on become too high.  Actually my infusion nurse had already commented on how excessive the dosage turned into for my frame weight.  So, it became on to my final TNF, SimponiAria infusion.  It regarded to be doing its process, then all of the unexpected a MAJOR hypersensitive reaction!!!  We needed to find out what caused my allergic reaction and so all meds were stopped and slowly added returned.  The reaction only befell the day after the SimponiAria infusion so my medical doctors decided it fine to prevent the medicine.  I became devastated!  What now?

I went on an older drug referred to as Acthar.  This is a essentially a steroid injection and we were just using this to “buy time” as we wait on new pills to come out and to optimistically get the AS under manipulate.  Acthar wasn’t genuinely doing a great deal to the AS, however it honestly changed into doing a LOT to my body—speak approximately side results you do NOT need—the moon-pie face and weight benefit!  Yes, I’m nonetheless on Arava and I’m absolutely no longer sure it’s doing a component!

Finally the drug we’d been looking was authorized and not simply authorized, but virtually the first drug to pop out authorised and tested on AS sufferers, Cosentyx.  I’m currently going thru the approval system and waiting…impatiently!!!  I want this medicine!  I want something!  I will keep you posted as to how Cosentyx works for me.  I had to prevent the Acthar.  I desired to prevent Acthar!  I desired Cosentyx.  I desired some thing that could gradual this bad disease!  Cosentyx is a new type of drug and optimistically, I’ll be on it with-within the next couple of weeks.  It’s odd to be begging…looking…wanting medication, however the ultimate numerous months have been awful.  The AS is getting worse and there are less “possible” days and extra days in which the AS wins.

So, why do I blog…to percentage my journey in hopes that it enables others with AS, and additionally to percentage expertise of what's going on to me.  Maybe my journey will help someone who has just been recognized or perhaps someone who is in which I’m at, wondering what next.  How this ailment has affected my lifestyles with surgical procedures and medicines.   It’s LIFE that we stay with AS and its LIFE that I will combat, but I will continually live as tremendous as I can and now not permit AS win!

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AS has my frame, however NOT me!!!
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