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.

AAARRRGGGHHHHHHHH *scritch scritch scritch*

I had to take my Adalimumab dose on Tuesday.

Stupid itching... It's driving me insane.

So I have decided to give the Zertec a try. And I found some old out-of-used-by-date creme that had 'steriod' as part of another word on the side of the tube. DermAid it is called. Mum and Dad tend to give me a lot of stuff they think I'll find useful. I'm sure they gave it to me. It's for minor skin irritation of a varying nature.

It doesn't work.

AAAARRRRRGGGGGGHHHHHHHH!

Week 30 from Baseline

Has it been 30 weeks already? My golly gosh! How time flies when people poke you in many places and you subject yourself to regular session of self-voodoo.

In the days since my week 28 update, my arthritis sympoms have been practically non-existent. In the last few months, a few occasions have seen relatively minor symptoms interrupt what has been substantial periods of relaxed normality. This has seen me gradually increasing the times I wear my heeled shoes. And aside from the usual misery your put your feet through when wearing these shoes, I have had no problems whatsoever.

I felt so confident that I have finally ghained back some choice over the matter, that two weeks ago I bought a new pair of black boots and a pair of red shoes, both with heels. Not overly high. But heels nonetheless. And since I refuse to wait for rainly days to wear all my new purchases, I have pretty much lived in these two pairs of shoes ever since.

But I know I need to give my feet a break, so I jump into my runners and flats in between heels in the office. I suppose it would be inevitable I would also suffer foot cramps, a sure fire symptom that one's feet has been over-smooshed from the wearing of high-heeled shoes. Smooshing cramps aside, I am so pleased my ankle is performing well under such conditions.

All I ever wanted, was the choice. Becuase for many years, there has been no choice. It's nice to have choice back.

Farewell to my CO (Week 28 from Baseline)

This morning, I attended clinic visit number something. My CO greeted me with news.

"I'm moving back to Queensland. This is my last week"

WHAT? *sniff*

Truth be told, I am a wee jealous. Yes, it was the state who gave us Pauline Hanson, Bob Katter and the place is full of rat-tailed bogans. But Queensland also has the best weather and, despite being one stubby short of a six pack, Queenslanders are the most genuine, positively spirited Aussies who give visitors the friendliest welcome and greatest hospitality. And despite my Melbournian heritage and my tendency to get a gleeful when stoking the fires of our interstate rivalries, I can definitely see Sharon of the future living and being very happy up there.

Now, back to the visit.

My CO told me several patients report a 'recently' a severe itch at the site of the injection. And my whining about it is consistent with other reports. I got the feeling by the use of the word 'recently' that this may be a fairly new-ish phenomenon. If that's the case, then one can logically deduce that something in the syringe has changed. My CO hasn't been informed about any changes. So, I would like to take a moment and say to Abbott Technologies, the producers of Adalimumab PLEASE FIX IT! MAKE IT STOP!

I'm going to try out Stingose. But my CO recommended some over-the-counter allergy stuff like Zirtec the day before and the day after I jab. I would rather not really. I'm already feeling like enough of a pill popper as it is.