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.