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.

Week 46 from Baseline

Week 46 brings me to the half way point in the trial. So what has changed since the beginning of this adventure? It appears plenty.  I've done a little mind mapping to represent the 'then' and the 'now'.

Pretty awesome if you ask me.

Week 42 from Baseline

For the non-medically minded, I introduce you all to the notion of 'Plantarflexion'. This motion, is a motion of the foot. It describes the movement where the toes or ball of the foot is pushed down towards the ground. For example, you Plantarflex when you're pressing down the accellerator pedal of a vehicle.

Are you with me?  Okay then.

Plantarflexion isn't interesting to you until your ability to do it has been removed. And I would fall into that category. But today, I am excited about it becuase I have done something I haven't been able to do in a long time. I stood up on tip-toes using only my left leg to support my entire body weight.

Did I say a long time? I should qualify that. The last time I stood on my left leg and successfully raised myself up high onto tip-toes like any other normal person can do would have been September 2004. Of course we all know that I've only known about my arthritis for a little over a year and a half now, but that goes to show that I have been conscious about it and living with its symptoms for a lot longer.

Plantarflexion exercises using my left side only was the first physiotherapy exercise that Stretch assigned me after I rolled that ankle on a lunchtime run and shattered it like a piñata. It was the first of many weird and whacky exercises to come over the months and while the other exercises came and went, this was the one Stretch demanded I continue. It was painful for me and he knew it, but it was necessary to do as many of these lifts as I could. And after a while, once it was clear that the ankle troubles were plainly not limited to simple soft tissue damage, I stopped. But I never really stopped that exercise, not completely. Instead, I adopted it as a measuring tool and it became a very useful one. During the undiagnosed era, if it hurt like there's no tomorrow, I was in for a limp'n-filled day. On good days, It didn't hurt so much and I could get 3/4 of the way up into the lift. I have never been able to get anywhere near the same degree of extension I enjoy with my undamaged right foot, but it was still a fantastic way to benchmarking how my foot was going to be on any given day.

Since the commencement of my treatment, the need to use the exercise to gauge how I felt has steadily declined as my body has responded and my symptoms have dissipated. I used it early on to measure the improvement I was starting to feel. I used it again to determine when my ankle had improved enough to chance a pair of heels. And yesterday, I did it by complete accident while reaching for something on a high shelf only to instantly realise that I had achieved a full extension with no pain or any other negative sensations at all. No pain. NO PAIN!

It's often the little things that make you grin for days.

Week 36 from Baseline

It's been quite a number of weeks between updates, hasn't it? While I haven't enjoyed neglecting the blog, there really hasn't been too much to tell. My symptoms have been consistency negligible. And there is no point filling this blog with posts that tend to waffle on and on for no good reason.

But I thought it be prudent that I at least drop in.

Last time I posted, was around the last time I had a clinic visit. My visits are now every two months. So it was first time I would visit the clinic since my CO left to move interstate. Actually, my visits are always scheduled for Tuesdays and this week was no different. But since I hadn't set a push notification for the calendar item on the 'ol iPhone, I forgot the appointment. Naturally this did not go on unnoticed.So my appointment was rescheduled for today instead.

As it happens, I missed out on seeing my old CO, who happens to be in Melbourne vising family.; And while she was here, she dropped into the clinic to help out. But she wasn't in when I was there. I am a little disappointing she wasn't there. A part of me misses her familiarity and her friendliness. That's not to say my new CO, CO2, isn't friendly or likable. But my former CO did have a way of making the visits, the poking and prodding almost fun....... Almost.

But there was some familiarity. Flames was around to do my joint assessment.

Today's visit started with CO2 leaving me to the full monty of survey questions while she prepared all my drugs.

Then came the "How are you feeling" question.

I told her about that the SpA is all good. Little bother since my last visit. It's never really been made clear to me what I am supposed to say at these times. I know I'm supposed to talk about my SpA symptoms but I never know if I'm supposed to tell her if I'm noticing other changes as well. I think I'm supposed to. After all, there's a billion and one side effects one can get from taking Adalimumab as can be seen here. So I also told her I think I'm feeling my heart beat in an abnormal way. This is true. I have only noticed this in the past two weeks. When I am idle I notice it. My heartbeat changes to an abnormal beat for around a minute or so. Since I am a First Aid volunteer, I am pretty quick to check my pulse. It feels irregular and thready. And then, just as quickly as it started, it will go back to it's usual normal beat. On two occasions, I recall I felt a little odd at the time. It's hard to describe 'odd'. I guess it could be described in one way like a little bit like a rush. Not the head-spinning kind. But like..... I dunno. A rush.

I'm 34, not overweight, have a decent diet and when the Melbourne winter isn't at its finest, I like a little exercise. I don't really fit the profile for someone who has a high-risk of cardiac issues that require immediate action. I've told my CO2 so I assume its on the record and the doctors, possibly The General, will see it. And I have little doubt that if its a problem I'll get a call soon. And if its not, it'll go into the filing cabinet of irrelevance. Still, I have made a mental note to raise the matter with Dr Flowers next time I see him should the symptom not go away.

My CO2 did have two interesting things to say regarding the post-injection itches which, as have mentioned in previous updates, wasn't an issue until many injections into my treatment. I had pondered whether the preservative that they use to keep the drug good in the syringe was changed. But she said that once I start in the medical trial, they aren't allowed to change anything. The second thing was that it is important to shake off any leeching of the Adalimumab from the end of the needle that occurs after you take the cap off. This is also true. When you take the cap off the syringe just before you jab yourself, a tiny drop or two always comes through the tip of the needle. It will either hang there or it gets too heavy and drops. Well according to CO2, that can bounce onto your skin as the needle penetrates. And this can contribute to the allergy symptoms.

So I made sure to shake any leakage off before self-administering my invasive lovely.

There is no itching now. But the lack of drippage isn't the reason. There is no itching now because there is something else. A dirty rotten bruise. The only time I have ever bruised up after a needle since I started the trial was when my CO stuck me badly. I've never caused that in myself before. Another first.

It might be a choice between bruises or itches. Grand.