Well, guys, it's all over. The trial officially for me ended last Tuesday, where I had my final consultation. Both consultants who were running the trial and the trial nurse have been absolutely magnificent through out the year. They have had to put up with my initial absolute fear of my kidney diagnosis. My incessant questions. And my warped "sense of humour" :lol:. The only thing I can say is Saints have the patience of these guys :roflmao:
It's been an interesting trial for me for many reasons. I must admit, I'm a bit of a risk taker / dare devil. When I was offered the trial, everything sensible in me was saying "don't do it. don't do it. don't do it.....". But then I had 2 other voices in my head also. One saying "do it. do it. do it!" to take a risk. And the other saying "do it. It may not only benefit you, but may also benefit all those who are or will go through the same things as you". As you all know in graphic detail, I did "do it", so I won't torture you by going in to the details of my year all over again. I will though give you details of what happened on Tuesday.
It was a quick consultation to take my final bloods, review the results over the year. And that was it. I was going to take down the results but was told I can access them online. Unfortunately, the actual Lupus results don't come online. C3, C4, DSDna etc. I will ask for them at my next appointment.
I do have my protein results though, which may give a small indication as to the possible effects of Benilumab (or the power of the placebo effect) - my protein a year ago was around 300. The PCR now is - 52 (albeit with the effect of my Mycophenolate and my blood pressure medication). Anything below, and most consultants consider it a remission.
My C3 and C4 results are around the 3ish mark, but these are from memory, and my memory is awful. But they were around the 3 mark. Next time I visit, I will get the results.
I will and won't miss the infusions. I will miss them as I did enjoy having the total relaxation time away from all the stresses and pressures of my life. I could just sit there for a couple of hours and relax. And I won't miss them as I lose 2 days of my life each month. 1 day for the infusion. And 1 day to recover from the fatigue.
I'm sure I've forgotten things to feedback. If I remember, I'll be Arnie and I'll be back..........
I don't know if I've done this yet or not, but I'll do it now just in case I haven't.... I want to say thank you to all of you lovely people on here who have advised, supported, reassured and put up with me since I've come on this site. In my days of absolute panic you guys are the only folk who have managed to calm me down x.
If we ever meet, I owe each one of you a milkshake :thumbsup: