No One Talks About It

No one talks about the emotional toll of starting a new treatment plan.  I never expected that taking medication for AS would be so emotional...but to me it is.   While there are many medications to treat AS, the trick is finding the one that works for you.  This disease has individualized symptoms and that also means individualized treatment plans.  The frustration with this is there is no pill or medication that can guarantee it will alleviate the most bothersome symptoms.  And to make things worse, some of these medications mean I must give myself an injection.

 Wait…what?  Yeah, I said it.

You have to give yourself an injection on a regular basis. Some of these injections come in a pen-type of injection; others are a prefilled syringe, This freaked me out.  My backstory…When I was very young, I hated injections.  Really hated them.  My pediatrician, who was my next-door neighbor, had the unfortunate task of giving me my regular vaccinations. His office was in his home.  His wife would comment that when she heard a distinct scream/crying coming from her the lower level of her home, she knew it was me, in for my regular check up and vaccinations.  So now, the little girl with the blood-curdling scream must give herself an injection.  I remember sitting in my rheumatologist’s office, waiting to meet the nurse who was going to show me how to use an autoinjector and thinking, “I just want to cry.  How did my life get to this?”  But, at 48 years old, it wouldn’t be appropriate for me to carry on like my 4-year-old self at this appointment.  So, I had to suck it up and learn how to do this.  I felt sad, nervous and scared as I met with the nurse.  I kept my feelings to myself.  The nurse showed me what to do and before you know it, I gave myself my first injection.  And…I survived.  It wasn’t so bad after all.

My first medication was Simponi, which I was taking for about a year but then started to notice my AS symptoms were getting worse.  More joint pain, back pain, fatigue, and one of my toes was inflamed.  The doctor added Methotrexate to help boost the current medication.  This was another time I felt sad and defeated because I wasn’t particularly excited to start a new medication that causes hair loss, nausea, diarrhea to name a few symptoms.  This medication in much higher doses was used as a chemotherapy drug.  That was alarming to me.  As I gradually eased into this new medication, I had some of the unpleasant side effects but over time, these symptoms went away. This new medication did nothing to help me feel better.

Time for something new.  I went through a period of trying new medications including Stelara, Humira, Enbrel, Otezla and Cosentyx.  Stelara worked great for a month and then it was back to my symptoms.  Humira did not work at all and the autoinjector was painful.  I had a mild allergic reaction to Enbrel.  Otezla was helpful but I started feeling depressed. (One of the side effects of this drug.)  Cosentyx worked well but was not covered when I changed insurance.  As I tried each medication, I felt anxious about whether it will work.  Will I have any side effects?  How long will this work for me?  I was trying medication after medication without much relief.  I started to worry that I was running out of options.  This is when sadness turns to desperation.  What if I do run out of options? How will I feel?  What will my life be like? I shared my feelings with my rheumatologist.  She encouraged me not to lose hope as there are many new medications that are coming to market.

The emotions of taking medications is like a roller coaster.  You’re up when you feel good and you’re down when your medication stops working.  When I start a new medication, my daughter jokes with me saying, "Let's do lots of activities because we don’t know when the meds will stop working."  And that’s the lows of my roller coaster ride.  You get a taste of what a normal life feels like again only to be taken away with the reality of my disease. That’s the most sorrowful time.

Due to the changes in my insurance, I no longer have to give myself an injection.  Now, I go to an infusion center connected to a hospital for Remicade infusions.  Here I go again…anxious, nervous, not knowing what to expect, how will I feel, will I have a reaction?  The uncertainty of the process can really be unnerving.  But, through experience I have learned once again, things aren’t as bad as I anticipate them to be.  The infusion process from start to finish takes about 4 hours.  They give me medication before the infusion to prevent an infusion reaction.  This medication makes me sleepy and I feel tired the rest of the day.  The center is brand new with tv’s, recliners, warm blankets and beverages to keep me comfortable during the process.  The nurses are wonderful and are attentive to me.  Being in an infusion center, I am with patients who are there for many different reasons.  Some are like me receiving Remicade, others are there for nutritional support, but the majority of patients are there for chemotherapy.  It is unsettling to hear patients vomiting from their treatments or seeing a team of nurses go into action as a patient has an allergic reaction.  So, as I sit there while all this is going on around me, I pray for these patients that their treatments are effective, that they are healed from their illnesses.

Finally, I have a few pieces of advice.  First, a disclaimer.  The medications I have listed here were prescribed with care from my rheumatologist.  Please discuss with your doctor what treatments are best for your condition and symptoms.  Once again, this disease does not respond to a “one size fits all” approach.  This leads me to my next point.  It’s so important to have a rheumatologist that you feel comfortable talking with, that respects your opinion, and listens to you.  I have a wonderful rheumatologist.  We have a team approach to managing my condition.  She is open to my questions and opinions, and I truly appreciate it. She feels bad for me when I don’t feel well, and she cheers for me when my medication is working.  Lastly, we all have a variety of emotions dealing with a chronic disease. It is important to find a strong support system who understands what you are going through. Please click on the links at the bottom of the page for more information about spondyloarthritis..  The Arthritis Foundation and the Spondylitis Association of America have been great sources of information and support for me.

How's Your Back?

What’s more difficult than pronouncing Ankylosing Spondylitis?  Try explaining this complex disease to others.  So many well-meaning family and friends ask me, “How’s your back?”  While I appreciate their care and concern, it can be frustrating to have a disease that is difficult to explain to others.  The reason why is because I have so many different symptoms that I don’t want to burden others listing everything that’s wrong with me.  With AS, symptoms vary from patient to patient.  Some patients have mild symptoms and can live their daily lives.  Other patients have significant symptoms that result in disability, like me.  In this post, I want to share with you what ankylosing spondylitis feels like to me. 

What does spondylitis feel like?   I have pain and stiffness in my neck, lower back, and hips.  Then there’s pain in my shoulder, knees, ankles and heels.  Let’s add to the mix rib pain, chest pain called costochondritis, and dactylitis which is inflammation of the toe, otherwise known as “sausage toe.”  (Doesn’t that sound pleasant?)  My hands, feet and ankles swell.  There are also times when my limbs feel heavy as if someone is pulling on me.  Now all these symptoms don’t usually happen all at once.  They come and go, mix and match, and so the difficulty with this disease is never knowing how I will feel when I wake up each morning.  It makes it difficult to make plans when I’m unsure of how I feel.  This disease dictates my social life, or things I want to accomplish, and that can feel frustrating.  I wake up each morning with a plan for the day.  When I get out of bed, my body lets me know what I can and cannot do.

Fatigue: I manage my pain the best way I can but the most life-changing symptom of spondylitis is fatigue.  This is a type of fatigue that can be indescribable. No amount of rest relieves it.   Some days, I wake up in the morning, start my daily routine, and within a couple of hours, I feel completely exhausted…like I have put in a full day’s work.  And it’s only 10:00am!  There are times the fatigue is so compelling, that I just go to bed.  There’s nothing I can do and it’s best to retreat to my fatigue.  This fatigue has changed the routines in my life:   

• When I was well, I could clean my house in a half-day.  Now, I clean just a few rooms each day because I must stop and rest. 

• When I was well, I could spend an afternoon running errands going to several stores.  Now I must choose one or two stores, and then come home to rest. 

•  When I was well, I could work a full day, come home, cook a complex dinner for my family and clean up.  Now, I must cook simple meals for my husband and me, with few steps, and sometimes ask my husband to clean up because I’m too exhausted.

•  When I was well, I worked full time as an elementary school teacher.  Now, I work a few hours a week at a community college and it feels as if I am working full time.

• When I was well, I could spontaneously take a train to New York City, walk all over the city, come home slightly tired but back to work the next day. Now, if I go to New York City, I rest the day before my trip, take subways to get from place-to-place, and take the train home feeling exhausted and then rest the next day.

Arthritis Flares: Let’s talk about arthritis flares.  Flares are defined as an increase in disease activity or worsening symptoms. This is where spondylitis goes from bad to worse!  If I overexert myself, I will usually get a flare. It can also come after a stressful situation. Flares also happen to me with extreme weather changes.  When a Nor’easter is approaching, I feel significantly ill.  All the symptoms kick up at once.  I wrap myself in a blanket and lay on the couch and get very quiet.  Rest, steroids, and naproxen (an anti-inflammatory medication) seem to help quiet down my immune system.  But when a flare occurs, it’s another time to move slower than I do already, rest, and wait until the flare passes.  Fear of a flare is always in the background of any planned event.  My daughter was married over the summer.  I was fearful that I would wake up on her wedding day with a flare due to the busy few days before the actual wedding.  Thankfully, I felt well, and it was a lovely day!

The Struggle is Real:  Living with ankylosing spondylitis daily feels like every moment is an effort.  Moving through the day requires exertion.  Some days I push through the best I can.  Other days, I am tired of always feeling like everything I do is an effort.  The best example I can use to describe this is when you get the flu.  When you get the flu, you feel ill for about 7-10 days.  But, then the fever breaks, you feel better, and you return to work.  But even though you feel well enough to work, you have those moments towards the end of the work day where you feel tired, run down, and all you can think about is returning to bed.  That’s what AS feels like to me.

While this all sounds completely awful, I have found that I do get used to living with these symptoms. The pain is there every day.  Some days the pain is mild; some days it’s more noticeable.  Learning to be mindful of how I feel each day, and practice self-care allows me to manage this chronic disease the best way I can.  In an upcoming post, I’ll share how I stay positive while managing all these symptoms.

How Did This Happen????

I’m not sure I have an answer to this question.  But, I can tell you about my symptoms that led to the diagnosis of ankylosing spondylitis.   Early in 2012, I remember my first symptom occurred while I was working at a computer in my elementary school classroom.  As I stood up from my computer, I felt a shot of pain that started in my neck and went down to the base of my spine.  Over the course of a few weeks, my symptoms increased with back pain, neck pain, joint pain and swelling. I really had no idea what was going on.  I went to the doctor, who I had seen earlier in the year for a herniated disk.  He sent me for physical therapy.  While in PT, things only got worse.  I remember while I was getting treatment for my back, out of nowhere, my left shoulder was in significant pain.   In the meantime, I discussed my health issues with my father, who was a retired orthopedic surgeon.  He said if I didn’t feel better after physical therapy, then I should see a rheumatologist.  After physical therapy and much desperation of not feeling well, I made an appointment with a rheumatologist.  The doctor gave me a thorough exam, blood work, x-rays, and said to return in 2 weeks to discuss the results.  When I returned, she gave me the diagnosis of ankylosing spondylitis based on my symptoms and testing positive for HLA-B27.  I was lucky that I was diagnosed so quickly.  I am so grateful for the wise counsel my father gave me to seek out a rheumatologist early in my disease progression.   Most patients with AS do not get diagnosed for years which results in significant joint damage.

So, what is Ankylosing Spondylitis and what is HLA-B27?

Ankylosing Spondylitis (AS) is in a family of joint diseases referred as Spondyloarthropies…SpA for short.   AS is a form of inflammatory arthritis that affects the spine and large joints. However, AS comes in many degrees of disease progression and symptoms.  Another post for another day!  HLA-B27 is found in a blood test and if you test positive with this antigen, you are more likely to develop an autoimmune disease like AS, Juvenile Arthritis or Reactive Arthritis.  So it makes sense that based on my symptoms and the blood test, that Ankylosing Spondylitis was the likely culprit of all these painful symptoms.  In a future post, I will discuss the many medications and treatment plans I have followed to feel better.  Spoiler alert…. there’s a long list of medications I tried and it’s still a work in progress.