Tuesday, August 25, 2009

Tuesday, August 25, 2009

Well, as stated in the header, this is just me talking about how I am dealing with the disease and what I am really thinking from time to time.
I decided to post on blogger as it seems to be a little more private than, say, Facebook, and therefore hopefully keep the silly comments to a minimum.
Hopefully this isn't going to go too morbid or emo. That's really not me (as you should know if you are reading this) but if it does from time to time please forgive me and tell me to build a bridge...
Now, hmm, where to start... A little 'What is Antisynthetase Syndrome?' lesson perhaps...
(If you have already researched this, then please feel free to skip this part)...

Antisynthetase Syndrome is a rare, chronic autoimmune disease. The hallmark of the disorder is the presence of antibodies (specifically the anti-nuclear antibody known as Jo-1) which attack and destroy the aminoacyl-tRNA synthetases which play a vital role in protein synthesis. Essentially, these antibodies prevent the body from absorbing protein in any form, as well as causing a number of other related problems such as:

Myositis (muscular weakness, tenderness pain, atrophy and fibrosis).
Interstitial Lung Disease (diminished exercise tolerance, difficulty breathing at rest, pulmonary fibrosis and eventual acute respiratory failure). 
Chronic Polyarthritis. (non erosive deformations of the joints, specifically in the hands, wrists, shoulders and knees due to calcification).
Pulmonary Hypertension (increased blood pressure in the artery connecting the heart and lungs)
Raynaud's Phenomenon (lack of sensation in the hands and feet due to restricted blood flow)
Photosensitive Rashes (speaks for itself)
Mechanic's Hands (build up and cracking of tissue on the fingers, similar to calluses)

It is unknown what triggers the body to first produce the Jo-1 antibody, however current thinking in my case is that it is a combination of environmental and genetic factors. Specifically, given that the disease is in some way related to Rheumatoid Arthritis indicates a genetic component, but environmental factors played a significant role in triggering.

Anyhow, as you no doubt know, I have been living with this since May 2007 and am being managed with varying success. At the current time, I am on 17.5mg of Prednisolone and 100mg of Cyclophosphamide a day, and monthly infusions of Ingragam P in an attempt to slow down progression. I am also on medication for high blood pressure, caused by the Prednisolone. Quinine to minimise the muscular cramping (not to sure if it actually helps) and a few other assorted drugs to rectify imbalances caused by the above medications.
Oh, also painkillers (specifically synthetic opiate based ones) and tranquillisers are a must in day to day life.

So, where does that leave me?

Well, at the moment, I suppose I am managing. I have good days and bad. I don't tend to walk much and given that we live in a two story house, I spend most of my time in the upstairs living area as the stairs have become somewhat of a major mission now. I haven't yet been medically restricted from driving, however I am starting to develop uncontrollable tremors so perhaps it is only a matter of time...

Other than that, all is well and I shall post here from time to time to let you all know how things are shaping up...



  1. Thanks for your time and effort in establishing this blog. It is sometimes difficult to ask how you are or what is happening. And I'm sure you get tired of telling the same story over and over again. This is a great way of keeping us informed.
    Uncle Trev.

  2. Thanks Trev.
    This is pretty much thanks to you in a fashion. :p
    I hope I can keep posting with some regularity.

  3. Thankyou for letting me know you have this blog happening. I have let my life get hectic and therefore I don't catch up with many people generally, but this does look like a great way to keep in touch, telling lots of people what they all want to know.

    You've done a fantastic job of explaining a really complex thing you are dealing with. I continually find the human body so strong, yet so vulnerable....

    Good luck, I'm thinking of you and your family.

    Cheers, talk on line.
    Linda :)