Drug Study is a No-Go!

Last week rheumy's office called saying "he wants to see you next week."  Hmmm, well that has never happened before, wonder what he wants.  Does it have to do with my recent blood work or is it about the study?  Of course the anxiety started to do a number on my psyche - I really could have used some Lexapro, since I didn't have any I had to take a few deep breaths and let go and let God.

Tuesday rolls around and I make my way to rheumy's office (not an easy task on public transportation in NYC; think few escalators and even fewer elevators).  Since we all love good news, I'll give to you first - there was nothing unusual about my blood work; bad news - I can't participate in the drug study.  Because it is an IL-6 and works within the body similar to Actemra, rheumy doesn't feel comfortable taking a chance.  While disappointed, I had to agree with him.  I never want to go back to that feeling of having an elephant sitting on my chest.

We discussed the options: 1. start Rituxan, sorry I don't think so, can't wrap my mind around that at least not yet; 2. wait for next drug study, okay if it starts within next 1-1 1/2 months; 3. add Arava (as a stop-gap measure) and remove Tramadol (honestly, it wasn't really doing much for pain) from drug regimen.  So I opted for 2 & 3. 

I can't imagine how people used to think that docs had all the answers to me medicine is just an experiment on a really grand scale.  You know, let's try this combo and if that doesn't work we can try this combo over here.  I am not disparaging docs, after all where would I be without my trusted rheumy?; but you have to agree that it is all experimental and we are the animal looking for the reward (read as: magic bullet to remission). 

We are our best advocates.  Present me with the options and let me make an informed decision, after all it's my body with all it's aches and pains.



www.actemra.com

Deja Vu - Farewell All Over Again

It has been a while since my last post, and I apologize for that.  This post is another farewell, but this time to Simponi www.simponi.com. After four injections, there was absolutely no improvement in my symptoms; not even a small reduction in fatigue, swelling or stiffness. As a matter of fact I have been in more pain and more fatigued.  (Plus that auto-inject pen was not easy to operate). So, my rheumy and I decided that it didn't make sense to continue taking the Simponi if there were no benefits. 

Honestly, I hadn't really expected any improvement (perhaps that was the wrong attitude from the beginning) since Simponi is a TNF (tumor necrosis factor-alpha blocker) blocker like Humira www.humira.com, which plateaued and was not an effective treatment for me.  My rheumy tried Simponi because he states that sometimes patients who have used a TNF blocker in the past will have better results the second time around.

So now, what course of action do we take?  There is a drug study for another IL-6 biologic and we decided since I had such positive results on Actemra www.actemra.com which is also an IL-6 biologic, I would be enrolled in the study.  For the next three months I cannot take any biologic drug while we wait for the Simponi to completely leave my body. Yikes!! this looks like a scary place to be (again!). Over the past 1 1/2 years my life has been a series of deja vu moments from going months with a biologic to saying farewell to one biologic after another. 

I am so ready for this roller coaster to stop because I WANT OUT OF THIS INSANITY!!!!!!

Farewell Actemra, Hello Simponi

Well, do you want the bad news first or the even badder news first? I have had to say farewell to Actemra (boo hoo, boo hoo).

This was the first biologic that had a very significant effect on my joints, especially my larger joints - hips and shoulders.  I first tried Actemra January 2010 - May 2010 and developed some strange problem with my lungs so I stopped taking it until the docs (pulmo & rheumy) could figure out what the problem was and to fix it.  Well that took until about December 2010, needless to say that I experienced some of the worst flares during that time period.  The pulmo doc finally diagnosed me with RAD (reactive airway disease) and asthma, and found the right combo of meds to get it under control.

In January, while at the pulmo doc's office, we had a phone conference with my rheumy and all decided that it was okay for me to re-start Actemra.  Yippeeee!!!!

I couldn't wait for my first infusion. That went off without a hitch and then I had my second infusion in February, again all green lights. Well ... by the end of February I was having problems with my lungs again.  I guess that definitively linked my lung problem with Actemra, so once again I had to stop Actemra.

My rheumy said we had to decide which biologic we were going to try next, so I searched the Internet to review all of the drug options available for RA. I looked long and hard at Rituxan, but boy oh boy those side effects are scarier to me than for the other biologics. The only appeal was that you get an infusion 1x every six months, I was even willing to sit through an 8-hour infusion session. 

At my next rheumy appointment I told him I had done research and was very scared of Rituxan, while is reason for having that biologic as a last resort was different from mine, we  both agreed that it was not the right one at this time. We discussed that I had taken a biologic that worked on IL-6 (Actemra), T-cell (Orencia), and a TNF blocker (Humira). He said that sometimes when you go back to a TNF- blocker some patients have success, so we decided on Simponi and the approval process started.

I will let you know how long I have to wait for approval, and how my first injection goes. Tell then, gentle hugs.

Cheers Are In Order

Cheers!

Yesterday was my second Actemra infusion. I am glad to report that so far I have had no side effects. While I am not experiencing the dramatic improvement that I felt last year at this time, I am hopeful.  At the very least, my Reactive Airway Disease is still under control, so maybe it didn't develop as a result of taking Actemra last January.

My fingers, toes, and eyes are crossed!

New Revelations

I apologize for going so long between posts; here's an update.  First, I did get my Actemra infusion http://www.actemra.com/ on  February 2nd (missed my January 28th appointment, got my times crossed) and everything went smoothly, despite the snow storm. Second, I have realized a few things:

              1. When I get my infusion I get a cocktail of Benadryl & Tylenol (I don't remember that from last year); no wonder I sleep through the whole experience.

              2. I have Sjogren's Syndrome http://www.sjogrens.org/. I kept wondering why I was constantly thirsty, mouth dry, eyes dry, skin extermely dry. (The thirst had me afraid that I had developed diabetes). Now I use Biotene toothpaste, mouthwash, and gum, Thera Tears, and tons of lotion (shea butter) & vaseline (more expenses, sheesh!).

             3. I need B12 shots and vitamins (sent rheumy an email about this); this exhaustion is kicking my behind and I am tired of napping my life away.

             4. I think I have Costochondritis htp://emedicine.medscape.com/article/808554-followup, explains why my rib cage, from front to back, is so tender.

             5. I need pain meds!!! That last flare was so painful and prolonged. I refuse  to suffer through another one with pain meds (sent rheumy an email about this too).

             6. I really LOVE my online RA family. They are supportive, informative, encouraging, tolerant (of my rants), funny, and always loving.

Next Actemra infusion http://www.actemra.com/ is schedule for March 2nd. Will keep you updated.

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.

In the Beginning: Pain, Pain, More Pain & Confusion

I don't know about you, but when my RA symptoms first started, I was in constant unexplainable pain and extreme discomfort.  This caused me a lot of confusion.  I was confused because I was the type of person who researched my symptoms (you know, a la Sherlock Holmes), figured out what condition I had, and then made an appointment with whichever specialist was needed - gastroenterologist, podiatrist, dermatologist; I always knew who to call.  Fortunately (but really unfortunately, if a referral was required would I have gotten help sooner?) for me, my medical insurance did not require a referral from my primary care physician.


But, when I plugged all of my symptoms - swelling in both feet, hands, pain deep in the hip sockets, neck, and shoulders - into the various medical websites, none of them gave me a diagnosis (I was so naive). So what did I do? Nothing, absolutely nothing.  I just kept slugging through the days, going to work, running my son to his various appointments and activities. All the while I pushed the pain to the back of my mind and telling myself that I am too young to have so many aches and pains.  I began to convince myself that I was a hypochondriac and so didn't bother to mention any of the symptoms to my primary care. Brillant, right? So for the next 8+ years I struggled with the pain, swollen & tender joints, and the incredible exhaustion.

I have to interject here that I did go see a rheumy during the first year of my symptoms. I heard that stress can trigger underlying diseases and I had been under an incredible amount of stress; my best friend was dying of cancer,I was working everyday, going to the hospital during lunch, and after work taking my son to his activities.

One Saturday morning, a girlfriend and I had plans to take the kids for an outing to an amusement park on Long Island and do a little shopping at this great shoe outlet I had discovered (I am a recovered, actually forced into recovery by RA, shoe fanatic). I woke up early, normal for me, and could barely get out of the bed. My joints were swollen so I popped an Advil. In hindsight, I realize that I was constantly popping Advils or Alleves to the point that I developed acid reflux and had to sleep sitting up. That should have been a wake-up call that the pain was constant. Guess what? I went on the little excursion anyway and boy did I pay for that dumb move.

Sunday morning arrives and my joints are even more swollen than the day before and I also have hives in my scalp, palms of my hands, soles of my feet. My primary doc instructs me to go to the emergency room and get a shot of benadryl. Over the next 3-4 days, the majority of the swelling recedes and the hives completely disappear. Notice that I said the majority but not all and from that point forward I became a recovered show fanatic...