I know I said I was going to post almost two months ago, but I've been kind of busy with the house and stuff...
Kerry and I decided that we were sick of the colour the interior of the house has been since we purchased it in '99 and wanted a facelift. To this end we have spent the last three weeks redecorating. I have removed all of the photos from the walls and filled in all of the holes where they used to hang. Kerry then sugar soaped them and together we got stuck into the painting. I have done the majority of the climbing ladders, which has proven not to be a good thing, but anyway, we are almost done now, and the results are very pleasing...
Medically...
Well, 6 weeks ago I presented for my scheduled Infliximab infusion and was instructed to resume my Cyclosporin. I was also given a 300mg infusion of Methylprednisolone. Apparently all of the tests they had been performing since I was in hospital came back negative and it was concluded that I didn't have an infection and that the disease was active again. Funny that, I did try to tell them, I think I know my body and it's disease pretty well by now... My oral Prednisolone dose was also raised from 5mg per day to 50!!! With that, it was good-bye to sleeping properly and hello to constant bouts of insomnia...
I must mention at this point that my regular specialist Professor Peter Keary, had been off work during the entire time of my admission as he had surgery of his own and returned two days after I was instructed to resume my immuno-suppressants.
Speaking of Peter, I presented for a clinic appointment two weeks ago and had to relay to him what had happened in his absence. The records taken during my last admission are missing from my file for some reason. Needless to say, Peter was not in the least bit impressed, however he did admit that none of the other specialists had ever likely seen or had any experience with Anti-Synthetase Syndrome and were flying blind in regards to treatment. I wish they had listened to me a little more...
As far as the disease is concerned, the drugs don't seem to be keeping it in check much any-more. Muscle mass is still decreasing which is making it difficult to get accurate readings of the diseases progression. One of the main blood indicators is Creatine Kinase (CK) which indicates the decay of muscular tissue, and I am now presenting normal CK readings due to the small amount of muscle tissue left. Shortness of breath on exertion has increased, which was to be expected as there has been an increase of scar tissue on my latest CT scan. Severe muscular pain is also a pretty constant part of life, so Oxycodone has become my best friend. Peter informs me that we are approaching the final stages of the disease...
A quick education on Oxycodone for anyone interested...
Oxycodone is an Opioid Analgesic. It is in the same family as Codine, Vicodin and Morphine. In terms of strength and effectiveness, Oxycodone is roughly twice as strong as Vicodin, but half the strength of Morphine. It is also addictive if abused and along with relieving severe pain, gives a feeling of euphoria and general all over relaxation.
Well, that's about it for this update. I have another infusion this Thursday and will post again if there is any news...
Cheers,
Jason
