I finally found something that explains exactly how I feel

I have SpA.

The only difference between SpA and RA (Rheumatoid Arthritis) is with SpA, it can't be detected by a blood test. That just means SpA in me, was harder to diagnose.

The only difference between RA and JRA (Juvenile Rheumatoid Arthritis) is when the symptoms began. As a child or an adult.

There are no other differences. All these variants, are essentially the same thing.

I finally found something that explains exactly how I feel.

So many people do not understand. Can't ever truly understand, and I would never ever want them to. If you know me at all, or even if you don't, and found yourself here anyway. I ask of you. Please share this video or post in anyway way you can. Morgan, she is me. Her story as it's playing out, is mine too.

Making a difference through awareness may not feel like much. But it is still making a difference.

BigLove x

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!

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.

WWAD.com

Warning: This post may make you lose your lunch

I was going through some old photos on my PC and found some I thought I'd lost. They are from 2006 when I broke my tibia and fibular bones in my troublesome left ankle.

When I talk about 'the ankle', this is it. It would fall apart a year later due to the beginnings of the onset of my condition. This is where it started 

It's been seven years, but I remember it like it was yesterday.

 

Oh yeah, it hurt like a bitch!

Week 110 from Baseline: Another year for you Ma'am?

Although regular followers will recall I promised only to post when I had something interesting or specific to share (as opposed to fill up posts basically saying nothing has changed) it has been quite a while so I thought I might drop in and give a bit of a status update.

My last visit to the research clinic (during week 104) was supposed to be my final visit. I was all ready to go through my last set of tests, surveys and preparing to say farewell to all the people who played a role in my welfare. You can only imagine my surprise when, upon arrival, my Commanding Officer informed me that the trial was going to run for another 12 months and invited me to continue.

I have no reason not to. In fact, the opposire applies. I have every reason to. Humera (Adalimumab) (when combined with the Sulfasalazine) has essentially been a miracle drug for me, if there is such a thing. It is the real reason behind this blog being so quiet. When I decided to document my experiences on this blog, I never dreamed I would face the situation where I would have little to say because I am largely symptom-free.

Let me say that again, just for emphasis. On most days, I AM SYMPTOM-FREE!

No Uveitis, no obvious signs of swelling and I'm largely pain-free. The only problems now happen occasionally at night. During those times, the I get back pain is enough to prevent me from sleeping, resulting me to take liberal doses of ibuprofen and codeine in order to take the edge off enough to get to sleep. Sometimes it works, sometimes it doesn't. While the back pain comes and goes, it is the one symptom I can't seem to shake off totally. And I know I am not totally free of inflammation. Each time I have a joint assessment at the research clinic, they always find one or two joints with swelling in them.

But this is a lot better than in late 2010 when I started in the trial. Those joint assessments revealed inflammation in the almost all of my joints. Yes indeed, I have benefited a lot from my drug-issuing Masters of arthritis research.

But even this doesn't stop me running anymore. Ah running. The very thing that started it all. The goal I kept looking to during the seven years of hell I went through prior to being diagnosed. Getting back to being able to hit the pavement. That goal has been attained :)

Until next time then xx

Rove McManus discovers Adalimumab (Humira) is not something to be taken lightly

Abbot, the pharmaceutical company that manufactures the Adalimumab into little syringes called Humira have come up with some new Ads which are now screening on American telly. If you've ever been to the US and watched a little television, you will know how numerous, and outright scary those ads from pull pushers can be. Most companies have regulations around how pharmaceutical companies can market to consumers. For Australia, there's no room at all to advertise prescription meds, with Aussie law makers leaving the decision between you and your doctors alone without marketing interference.  But on the USA, arguably the largest pip-popping over-medicated country, these rules do not apply.

"Got *blah*, *blah* and *blah* symptoms?. Chances are it might be *blah* and you should be worried. Ask your doctor to prescribe *blah* drugs to you. Go see your doctor today."

Last time I was in the US, I even saw one that went along the lines of "Feeling okay? Well, that's wonderful, but you can feel even BETTER if you take THIS"

Let's not beat around the bush. These ads are designed to frighten people. Frighten people into see their doctor and requesting medication. Between the pressure from the patient and from the drug companies, doctors are in a helluva bind. It's a terrible state of affairs really, but that's a whole other blog article.

Recently, comedian and Australian ex-pat Rove McManus has picked up on these ads. But notably he picked up on the ads promoting Humira.  Now, Humira is no small potatoes. You have very seriousl problems if you are using it and doctors do not put you on it lightly. This is highlighted quite firmly in the ad. Rove's analysis is  quite funny and not unfamiliar or unwarranted. To those of us taking Humira such as myself, we all had these thoughts. But a comedian sums them up quite well. Better than us mere mortals,

Yes, my readers, the content in these ads are true. However, when one is suffering from a chronic condition that results in crippling pain, you'll pretty much do what you need to do to manage it.

Start the video at 1:34 seconds and enjoy.

Week 52 from baseline

A major milestone visit to K today.  That means the full gamut of tests: bloods for toxicity levels, renal function, liver function and inflammation ratings.  Then there's the blood pressure check, weight check, a full physical, joint assessments, the super-sized version of surveys, and peeing in a cup to ensure I'm not pregnant.

The way that they rate a inflammation is rather fascinating. C-reactive protein (CRP) is a protein produced by the liver and found in the blood, the levels of CPD rise when there is inflammation throughout the body.  When there is no inflammation in the body, there is no detectable reading. When I first started the trial, my original baseline visit showed my CRP score was 95.  Last time I was tested, 8 weeks ago, my CRP score was 32.

And for the first time since the early days of the trial, I had the pleasure of seeing The General walk in. And I delighted myself with talking with him for a good long while of my experiences so far in the trial and how we thought I was doing.

I am running regularly now with no pain. Furthermore, last week I completed a smooth and steady 9km run that took me around an hour.  So in essence, that's an hour of high intensity/high impact exercise where all my joints, especially the troublesome joints in the lower half of my body are put through some rough challenges.  Okay, so the times are no where they used to be.  Before I crushed my ligaments, before I broke my leg and before I had any idea I would be diagnosed with arthritis in the years that followed, I could crush 10km in 50 minutes. But it was still enough to make the General beam like the moon.

'It's good stuff isn't it?' he asked me referring to the Adalimumab.

'Oooh yeah' came my reply.

The General examined me and he found abnormalities in my ankle related to the trauma. He asked if I use Orthotics and stressed the importance of some correction specific to that area. Those who have read The Pathway to Diagnosis know I do, but it has been many years since I had the need to see my old feet-loving friends.

We also talked about the additional benefits I see during times I don't forget to take Sulphasalazine as well as Adalimumab.  I admit, there are times I'm forgetful and I don't take Sulphasalazine as often as I should.  Remembering to take daily pills was never my strong point. And the usual trigger for me to realise I have had a forgetful spell and get back on the bandwagon,  is that I have a noticeable presence of pain I know is SpA pain and not any other type of pain.

The General confirmed that all of their research concludes that patients who supplement Adalimumab with another drug generally see better results than when using Adalimumab on its own.

Next review is in 8 weeks. With any luck, I’ll have entered myself into my first fun run since 2003.