Friday, August 29, 2014

Plan D

     Summer is over, time to get back to school.
Looking forward to the routine, but am a little sad this summer has gone by so fast. Also a bit disappointed we got so little accomplished on the health front.

     After communicating back and forth between researchers, specialists and the pharmaceutical company, the trial my son was partaking in was terminated.  A mistake was made, not one person was to blame, just a couple of circumstances combined, some fine print that was overseen, some misinterpretation, some lack of supervision, whatever it was: we had to stop. What it comes down to is that the trial has not been performed according to the guidelines that were set and is therefore invalid. We can not start over because he has already been exposed to the drug; it’s in his system, so again, a “contaminated” baseline. Too bad, so sad, but we have to move forward.

     The hopes we had to get a good start and see some great improvement is my son’s joints were crushed too. A lot of our time, our doc’s time, a lot of people’s time just wasted, unfortunately.  We made 7 trips to Calgary over the break and we have not made any gains. In fact, we are back to the drawing board and have to start from scratch.

     On to plan D.

     We decided we would give Enbrel a chance. It has never worked for my daughter, therefore we initially skipped it, but now with Humira not doing what we would have liked it to do, and the Certolizumab  being discontinued,  we thought we may as well give Enbrel a chance, who knows!

"Hop on the bed and let's check out those joints."

     So….in the process of getting that going. Insurance has approved it, the syringes are waiting in the fridge, and now we are waiting for a nurse to come and give him training. A less painful injection than Humira, but the down side is that he has to take it weekly. 
     Next week school start. First day of school there are volleyball try-outs. He is really looking forward to that. I am not, with his hands looking the way they do….but I’m not going to deny him this. We shall see how it all goes. 

     There is no need to look back; we do need to look forward. I have to admit though, that I would have hoped this summer would have given us some positive energy to start the new school year off on a good note.
     This too shall pass and we will tackle the beast somehow, we will even do it with a smile on! We've

done it once, we can do it again!

Wednesday, August 6, 2014

6 down...

     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!