Coming Full Circle

It has been 8 months since I have had a biologic infusion for my RA. Last May I developed RAD (Reactive Airway Disease) http://www.buzzle.com/articles/reactive-airway-disease-in-adults.html while on Actemra and had to stop the infusions.  In January 2010, my rheumy added Actemra to my cocktail mix of meds since I had had limited success with Humira & Orencia.  I was so excited because I had read all the results of the different trials, including the ones conducted in England. I even read the statstical information on how many people developed negative reactions and what those reactions were and to me the results were promising.

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 ...

Diagnosis:You Are No Longer in Kansas

Thanksgiving dinner, November 2007 was a low point in my life. After being unable to help my mom prepare our Thanksgiving feast because of the swelling I knew something had to change. I could no longer continue to be Super Woman, the time had come to lay down my cape. My body was no longer under my control; this was difficult to accept for the control freak I was (a later blog will describe the hard lesson I learned about giving up control).

After the weekend, I went home and immediately called the office of the rheumy I had seen a few years before.  Here is where my fortune changed, God intervened, and instead of seeing the same rheumy who had sent me away because I didn't have lupus (one of my sister's has lupus) without bothering to check me for any other auto-immune disorder, I was referred to his new associate. Boy am I thankful that he had too many patients (I feel for them because he is not a compassionate doc and you can often hear him yelling in the office at his staff and even sometimes his patients) because the rheumy I ended up with is a "dream."

The day of my appointment I was nervous, you know the kind of nervous where your stomach is in constant turmoil, you feel a little faint, your breathing is shallow. Well I reined in my courage, left the office, took the train one stop from Manhattan back into Brooklyn and bravely walked the two blocks to his office.  Honestly, the entire train ride - all 5 to 7 minutes of it - was spent praying that he was going to tell me that I had something simple; exactly what I had no idea, and I would leave his office with a prescription and in 1-2 weeks everything would be back to normal. Of course I had discounted all of the symptoms I had been dealing with over the last few years, but then again it's easy to convince yourself of something when you really, really want it to be the truth. Also, I had never had an illness, not even chicken pox. I was always so proud of my immune system because while others had colds I would feel crappy for a day and then magically I would be fine. Here's the rub: little did I know that my immune system was actually working against me the entire time not for me.

I rang the bell, was buzzed into the "inner sanctum", looked around and saw nothing but elderly patients.  This only served to reinforce my notion that I would walk out with a prescription and everything would be okay.  The staff were so helpful, I completed the usual medical history forms but was also given a form that asked very specific questions about my symptoms. Questions like: do you wake up stiff?, if so, how long does the stiffness last?, do you have pain in your left wrist?, right wrist?, rate your pain on a scale of 0-20, problems sleeping?, trouble dealing with anxiety, depression?  These questions had me saying "Whoa slow this train down, NOW!" These questions were hitting much too close to home for my sense of comfort.  I began to look around the office again and thought to myself, maybe I do belong here and maybe the solution to my problem won't be so simple. My heart rate once again increased, my stomach started roiling again, my breathing became shallow.  A nurse came into the waiting room and said "Ms. Lovejoy"...oops that's me time to go meet the doc.

Judy, the nurse was so gentle, she took my blood pressure, my weight (ugghh) and went over the medical history again.  The rheumy came in as soon as she finished and when I saw him I thought "wow, he is a nice looking guy." My crazy mind is thinking nice looking doc = good news. As irrational as that sounds, I already told you that it's easy to convince yourself of something when you really, really want it to be the truth.

He introduced himself and when he shook my hand he held on longer than normal and asked to see the other one. After examining both hands he looked at me and said "you have rheumatoid arthritis, I can tell you that just from looking at your hands." My heart sank when I heard arthritis, I don't even think rheumatoid even registered in my mind; probably because I had never heard it before. My mind is rebelling from the word ARTHRITIS!! No way, I am too young to have arthritis (a little naive I know)!!! I cannot express adequately how I mentally recoiled from this diagnosis. He assured me that we would do all the necessary blood work and x-rays but he was quite certain that I had RA. 

He explained to me the disease, how it affects the body, and the treatment options available.  He also told me that there is NO CURE!!! Wait a minute, I had expected to leave with a prescription and to feel better within the week. Stop the world, I want to get off, now!!!!

So, January 4, 2008 became the best day of my life and the worst day of my life...like Dorothy in the Wizard of Oz I was no longer in my comfort zone, the rug had been pulled out from under my feet.