Wednesday, September 29, 2010 0 comments

Week 2 from Baseline

Today was my second visit to K, and second treatment of Adalimumab. Fortuantely this time, I actually got the needle of the syringe past the skin on the first attempt and avoided a repeat of the first awkward attempt.

The survey I needed to complete today was only 6 or 7 pages long and I ripped through it fairly quickly. My CO said some of the survey questions were a little on the subjective side and she would be right. Many of them are terribly subjective.

Here's an example.

Have you experienced any pain in the last week? Place a vertical line below crossing the horizontal line.

0 ------------------------------------------------------------------ 100

Some questions specifically mention pain that is related to SpA. Some questions don't. So let's go with the theory that since this quesion is looking for the patient to report any pain. So do you include everything? If I kicked a door and hurt my toe should I mention it here? It is seemingly irrelevant don't you think? But they did ask for "any" pain. Going with the kicking the door theory for a bit longer, do I rate it at 100 because it hurt like a bitch the moment I did it, or a lower score marking the general soreness an hour later? Do you see what I mean? Am I over thinking it?

But what about the questions asking for pain that is related to SpA? Surely they are easier to answer? Well, you might think so but you would be wrong. Sure, evaluating my hip is very easy. After all, there is nothing else wrong with my hip. If I am in pain, the arthritis is the cause. If I am not, then the arthritis is under control in those joins. Simple!

But what about my ankle?

My ankle has sustained 2 traumas and two surgeries all in the last 6 years. Putting aside arthritis for a moment, no ankle will be working as well as it once did under those conditions. How do I know which pain is from my arthritis condition and which pain is due to the fact that if you were to peel back the skin covering the lateral side of my ankle all you would see is spaghetti? I could give you a long list of different sensations I get regularly or irregulary in my ankle. Which of those are SpA and how the fuck am I supposed to know?

Since this question did not refer to SpA at all, I gave it a nice big score given that I'd spent part of yesterday with a killer headache.

Yet another blood test. I guess I'm up for these each visit. The joint assessment from flames revealed identical results to my baseline visit. Apparently, there is still swelling in my right elbow. I must remember to bring this up with The General next time I see him given the fact that I have never ever had any problems with either of my elbows. Oh wait. I smashed my left elbow joint when I was six when I fell of the monkey bars at primary cchool. It was pinned and plated. Somehow, it is still perfect. Aside from a scar, there is no other evidence that it ever occured. But the swelling is in the other elbow. Go figure!

This time, I manage to inject myself without flinching and for some reason, I didn't hurt nearly as much. I am told that next time, I get presents.

I just *had* to go for a walk

I simply had to go for a walk today because today marked the first day since the end of summer the mercury sailed past of 20 degrees. My skin, which had been separated from the sun's rays for so long that it had consulted a lawyer and commenced divorce proceedings, was singing in delight.

We started from my house at around 11:30am and headed to an area of Altona that we hadn't yet discovered and which contained no traces of plastics factories or petroleum processing plants. After around an hour and a half we headed back the way we came and got back in the door around 3:30pm.

My hip which had recovered from its small flare up by now held out nicely. My left ankle on the other hand, did not. There was no presence of any sharp knife-like pain like I used to get in the years leading up to my diagnoses. A dull ache started fairly early on the way home. By the time I got home it was sore. I would give it a pain score of 6/10. After having sat down for an hour the pain had increased to 7/10 and I limped to the fridge when ever I got up to get a drink or some other minor task.

It remained like this for the remainder of the evening so 30 minutes before bed, I popped a couple of Neurofin Plus which, as usual, did little for the pain but enough to provide me enough mental lubrication to get to sleep.

And, as usual, I woke up on Monday with the ankle returned to its swollen state I describe now as "normal" and relatively pain free.

Baseline (Week 0) - Let the trial begin

Sometime in the last week, I officially became medical research subject #1303.

The clinical study of which I am now wedded is studying the effects of adalimumab on people with undifferentiated or peripheral seronegative spondyloarthritis (SpA).

The article How Did I Get Here is the story of, well obviously, how I came to be in this position. Over here, are the Players. All the people who have been and, in some cases, continue to be part of this story are given a mini-bio right here. Finally, over here, is my explanation regarding why this blog exists.

We begin this blog, at Baseline. Another name for Baseline is Week Zero. In practical terms, it involves filling out 20 pages of surveys, blood tests and clinical assessments. In my trial, the medical alumni at K are studying arthritis sufferers, so in addition to weight, height, and other physical facts one would expect to part with, it also includes joint assessments.

My joint assessments involve poking and prodding into joints looking for signs of limited mobility the range of motion, pain and swelling. If you have read How Did I Get Here it would be no surprise to find swelling and pain in my left ankle. There was also swelling in my right elbow, something I didn't expect and have assumed it to be to do with the fact that two days prior I was pushing my 11 lbs bowling ball down a set of polished floorboards which is an activity I have not been in a position to do much of in the last couple of years.

The last thing to be done during my baseline visit, would be to take my first dose of Adalimumab. Easy enough one might think until you learn that Adalimumab is administered by way of a needle and it is up to you to learn the art of performing subcutaneous injections. We've all seen it being done to someone else but how many of us think we can learn to do it without being told a very important secret. The golden gift of the perfect words which must certainly exist and when these words fall upon our uninformed ears, their power and wisdom make us an instant craftsman.

Seriously, these words don't exist.

The instructions are crap. They are crap because you just have suck it up and have a go. In fact, if the instructions said 'Suck it up and have a go' I think I would have actually helped. So I sucked it up and had a go.

I failed the first attempt. I flinched right at the last second and by the time my hand pulled away, the needle was almost touching the skin. If it did I didn't feel it. On the second attempt I didn't flinch. The needle penetrated like it was supposed to and I plunged the contents into the tissue.

Adalimumab fact #1: Adalimumab has a filthy sting.

My CO would tell me that the sting is not caused by the needle, because the needle is very fine. It stings due to the preservative that is used to keep the drug protected from early expiration. Now I'm no genius, but surely they can use another preservative. Last time I checked, there were millions of preservatives the human race has managed to either find or synthesise. Furthermore, my exposure to them whilst in the process of eating a meal has yet to result in my tongue and my gums going through such trauma. I'm just sayin.