August has arrived, don’t even know what happened to July! Summer break they call this; I am exhausted!
The weather is nice, hot and toasty, with the occasional down pour and thunder storm.
Since the beginning of July we have made 6 trips down to Calgary, with today being the most recent one.
My girl had a checkup. She is getting really close to her transition to adult care. We found out today her current doctor will be following her to the “Yard” ( young adult rheumatology department) to help familiarize her with her new team of medical professionals and to help the team get to know her and her history. Again I am very impressed with the thought that is put in to all these facets. Hopefully this will all make for a smooth transition. Plus we are excited we don’t have to say good bye to our beloved doc quite yet!
She was found completely clean (that’s what we say when there is no swelling found anywhere in her joints!) and because of this, yet another drug was scratched off her list! No more Plaquenil for her, all she takes now, to control her arthritis is Sulfasalasine and Humira. Nice deal, because since she was on plaquenil she needed to have her eyes checked by the ophthalmologist twice a year and now she will only have to go once a year! Still some stomach issues but we have a plan for that too.
In the mean time; I’m proud of my girl, she’s as strong as they come, in the cutest little package!
|the pile of paperwork is my daughter's file, and I'm afraid to say this isn't all of it yet....|
For my son it’s a different story, we are not where we want to be yet.
Our first appointment in July was to establish a baseline, from where we could start this “new” drug. Full body examination, all affected joints were registered, checked on range of motion, swelling and pain. Blood work was done, urine samples taken. Questionnaires filled in by both my son and me.
Three days after this we went to Calgary again, for a visit with the allergy specialist. He was tested for probably about 80 common allergies. None of them triggered a reaction so that is good to know. The specialist had a plausible theory for the reaction my son has had.
Since his immune system was “in a bad mood” at the time, with the arthritis being so active, adding to that a flu shot and on top of that his first doses of Humira ( and secretly I am also thinking he may have had an insect bite on his head as well) his immune system got out of control and reacted in the way it did, with the welts and the swelling.
Basically all the triggers worked like gasoline on a fire and made for a big reaction. So not really an allergic reaction, just all the symptoms! Chances are he may never react like this again, chances are he may, only time shall tell! Somewhat reassured.
Another three days later and we went back to the rheumatology clinic for day 1 of the trial. Again: a complete physical exam, blood work, questionnaires and the whole shebang. When we were “all clear” we went to the medical day unit where he received his first injection of Certolizumab. We stuck around for a bit to see if he had any signs of an unwanted reaction, but he seemed just fine so off we went!
We were off for a whole week before we had to go again! ( appointment number 4!) Just a check up this time, full exam, blood work and questionnaire, no shot this time! Easy breezy!
Appointment 5 was another week later. Full exam, blood work, questionnaires and this time it was time for shot number 2. So off to medical day unit,to get his shot and we were out of there.
Appointment 6 was today. We were able to bring the girl child too so it was two for the price of one today! Again a full exam was done. To be honest; so far I don’t really see improvement, but we shall stay positive and allow it more time! Blood work, urine sample, questionnaire, and off to medical day unit again. Today he did his own injection: man what a trooper! He had done the injector pens before, but never a syringe. No big deal for my guy; let’s just do it and get it over with. Also one to be very proud off! We were send home with his next dose, we actually have a month off! Maybe...
|impressive looking labels|
After our long drive home the phone rang. The doc phoned with some disappointing information. The representatives of the pharmaceutical company that give the (very strict) guidelines for the proper execution of this study, have failed to let us know we were to discontinue a certain drug before we could start this study. No Sulfasalazine…. He was supposed to discontinue before the start of the study. We have stopped using them as per now and we will have to wait and see if they will allow us to start over, with today being the baseline….I’m not sure what to say. I have to admit that I am rather disappointed to potentially see all this effort from both our medical team and ourselves be in vain….
6 down…..the drain?
We shall see, to be continued!