I went to the website http://www.actemra.com/ and signed up for their patient support program; this is also something that I had done when I was on Humira & Orencia (I strong recommend that we take advantage of these outreach programs from the drug manufacturers). This gives us, the user of these very powerful & dangerous drugs, an opportunity to share our experiences with the manufacturers, with other patients, financial assistance, a live nurse helpline. Also, we are notified of any newly discovered side effects. I strongly believe that you have to be you own advocate when it comes to your health.
So.. I had Actemra infusions for January, February, March, April & May. By April I started to notice that my breathing was belabored. I was seeing very positive results as far as a lessening of joint pain went. At that time I was still working and had to travel on the bus & train and realized that upon leaving the train station I could no longer walk up the flights of steps to leave the station. In my never ending struggle to lose weight (especially Prednisone weight) I had stopped using elevators & escalators and started walking up steps at every opportunity in an attempt to walk at least 10,000 steps a day. I had also developed a cough, but I didn't have a cold, the flu or pneumonia. The cough was persistent and in the office it was quite embarassing. In my office, in the new style of management, we worked in a bunch of cubicles; no walls or doors, which meant that everyone could see and hear one another. My coughing was so out of control that it was disruptive to my co-workers. Adding to the embarassment was that often I couldn't make it to the bathroom and found myself heaving into my garbage can. Yuck!!
I am the self-appointed Queen of Self-Diagnosis; medical websites were made for me (see first post). After plugging in my symptoms, which were basically the coughing & vomiting I determined that maybe I was having gastro problems, something I had experienced years before. An appointment was made with my gastrointerologist (mind you I had just seen her in December and had an endoscopy and received a clean bill of health). She did another endoscopy and I received another clean bill of health. We were discussing the results and she suggested that I follow-up with a pulmonologist since the vomiting was caused by the cough not the other way around.
The day arrived for my appointment with the pulmonologist. Thinking back on that appointment makes me think of the posts I read about rheumys who are not at the top of their game and therefore not effective, whether it is because of inexperience or lack of knowledge. It is so important that our doctors be top-notch, and if not find another one! The first pulmonologist was completely at a loss after 3 months & two different meds did not improve my health. He wanted to put me in the hospital, which I completely opposed to. We all know that hospitals are notorious for patients developed respiratory conditions, plus who was going to look after my 13 year old son. I was vehemently opposed to being admitted. Finally, he referred me to his colleague.
Here I have to say - God is good. This pulmonologist had 30+ years of experience and he was the go-to doc for people who had been exposed to air pollutants at ground zero. So I felt that I was in good hands; turns out I was. He changed my meds and has worked with me over the last 8 months to get the RAD under control. In December he gave the green light to resume a biologic.
Well here I am, come full circle, because on January 28th I again take my first infusion of Actemra. I am optimistic. I believe that I will once again see a lessening of joint pain & an improvement in my quality of life.
Will keep you posted ...
