Tuesday, May 28, 2013 0 comments

Week 140 from Baseline: They. Are. Ruthless!

“They. Are. Ruthless!” - less emphatic words haven’t left The General’s lips in my presence before today. But these words were exactly what The General used when referring to Medicare’s brutal enforcement & monitoring processes of those of us who use Humira and other obscenely expensive drugs under the Federal Government’s Pharmaceutical Benefits Scene (PBS).  They even have their own ‘special branch’ to deal with people using these super-expensive drugs. Sounds a little CIA to me, but I suppose I get it. After all, this isn’t paracetamol I’m on. It’s a drug that changes the way my brain talks to my immune system. At $2,000 a shot, I kinda get why their want to make sure the peopke who need it, get it & those who don’t do not. But still, it’s not pseudoephedrine, for fuck’s sake. And given the additional risks I face when taking it, trust me, no one would take this drug for shits & giggles.

I am told if I miss filling a script, or miss a monitoring visit with my doctors, they’ll cut me off like a pissed off billionaire would cut off his trust fund baby once they committed murder. And I can never ever “not at all in your lifetime” get back on that list once I’m removed. Feel distrusted? Oh, just a tiny bit. However since I won’t have to pay $2000 every fortnight for medicine that will keep the symptoms at practically zero for as long as possible, I will fall in line without a word. Okay, maybe one word, but it will be muttered very very softly.

The reason The General told me this is because today was my final visit before my participation in the trial comes to an end. I have 4 months left. And no more baselines visits between now and then. Once again, my results from last visit were unremarkable. My ankle is still swollen and there were one or two areas of inflammation that could be detected in either my hands or feet, yet remained undetectable by me. All organ function tests, normal. Unremarkable results is always good news!
Monday, May 13, 2013 0 comments

World Autoimmune Arthritis Day - May 20th 2013

Lupus (SLE) - inflammation of the various tissues of the body.
Rhuematoid Arthritis (RA) - inflammation of the joints & tissue surround the joints as well as inflammation of organs of the body.
Psoriatic Arthritis (PA) - inflammation of the joints & skin.
Sjogrem's Syndrome - a glandular autoimmune disease that affects joints in 90% of cases.
Juvenile Arthritis (JA) - any form of arthritis that develops in someone under 18 years of age.
Anklosing Spondylaritis (AS) - inflammation primarily affecting the spine but also affects other organs of the body.

Plus a number of extended diseases. 

For those of us who don't fall into neat categories (always the way!) we have combined abbreviations. Like SpA, my variant which is mostly like AS & RA in it's presentation. Two things make my case unable to be neatly fit into the above categories.

1. I do not fall into the RA class because RA can be detected via a blood test due to the presence of the rheumatoid factor in the blood. My results were negative. 
2. I do not fall into the AS class because there is no inflammation present in my spine. Only the periphery joints in my arms & legs.

These are subtle differences that really only matter to me. At the end of the day, I live with autoimmune arthritis. 

Lend your support to World Autoimmune Arthritis Day & get further educated.