Tag: cosentyx

How the Health are You?

~ Kristin ~ 1 Comment

A friend of mine used to ask me this every time she saw me. It made me laugh.  I was just a kid, and I liked how she, an adult, was playing with language and ‘getting away with’ saying a ‘bad word’.

Who knew, way back then, that questions of health would one day dominate my life?  Who knew that I would spend years trying to discover what the health is wrong with me and how I can remedy the problem or at least minimize its effects?

But guys, I have relatively good news!  After five years of trial and error — testing, medication, treatment, side effects, etc. — we have discovered a strategy that, at least for now, is reducing my symptoms!

Let me pause here and give my disclaimer that every body is different, no one treatment works the same for every person, and certainly this is just my story.  I am in no way suggesting that your strategy for managing your health is inappropriate or that you should alter it in any way.  

I haven’t written about my health since last summer when I was doing a trial of Cosentyx.  After a over a year of no medical intervention for my illness, which had been labelled psoriatic arthritis and/or fibromyalgia, I had gone to a new rheumatologist who, at least initially, promised hope for reduced pain, better mobility, and less fatigue.  She felt that Cosentyx was a miracle drug and that I would certainly see dramatic results perhaps even with the first dose.  I was so excited!  After four years of pain and fatigue that limited my everyday life, I was looking forward to ‘getting back to normal’!

Well, I did see a dramatic effect, but it was not the one I was looking for.  Cosentyx made me an emotional wreck — I mean a serious emotional wreck.  I could barely function, particularly when the doses were back-to-back in the initial ‘loading’ period.  I was irrational, depressed, impulsive, and downright mean.   Nevertheless, I continued through that initial phase hoping to strike the promised gold; it never surfaced.  I stayed on Cosentyx for six months with no real improvement.

My doctor, suspecting a different diagnosis of degenerative arthritis, next recommended that I visit a pain management clinic.  I have been very opposed to this from the start.  Remember that prior to this illness, I had been a pretty avid runner for about 10 years.  I had run 5-6 days a week and completed two half-marathons.  I was in pretty great shape up until I started noticing joint pain and extreme fatigue.  I did not want to resign myself to a life of pain meds — I wanted to get better!  I wanted to find the source of the problem, fix it, and get back to my life!  My previous doctor had also recommended pain management; that’s when I had decided to try  homeopathy.  Homeopathy offered me hope and agency but no true change.

Anyway, I digress.  Last fall, when my current rheumatologist recommended I go to the pain management clinic, she suggested I try a steroid shot in my sacroiliac joint — the biggest source of my pain.  This sounded different to me.  She was not suggesting that I take NSAIDS for the rest of my life or that I take opioids or some other form of pain medication.  She was just suggesting a steroid injection.  I was willing to give that  a try.

With the very first injection I noticed a change — I didn’t have such a high degree of pain or such dramatic fatigue.  In fact, I was moving around more easily and having more energy.  After my second injection a month later, my chiropractor and physical therapist both noticed structural differences — my spine adjusted more easily, my muscles seemed more relaxed, and my posture was more erect.  After the third injection just two weeks ago, I notice that I have more endurance as I move through my days and I sleep more comfortably at night.

For the first time in five years, I have noticed a significant change in my ability to function!

Now, I will say that I am cautious in celebration.  First, I am only two and a half months into this treatment.  I do not know how long it will last.  In fact, after the third shot, the medical team said that I should call them “as needed”.  What does that mean?  Will my relief last a month? Two months?  a year?  What I am told is that everyone is different.  Some people get relief for months; some get relief for much longer.

The second reason that I am cautious is that I do not want to go back to my soldiering ways.  My illness has helped me, through trial and error, find a better pace for my life. I don’t try to cram twenty hours of living into every day any more.  I find time for work, but I also find time to rest.  I have built boundaries into my life that never existed before. I have more time with my husband, more availability for my kids and grandkids, and more margin to manage the unexpected stuff that arises in life.  I don’t want to lose this balance as my health improves.

I still believe that this journey of the last five years has been a lesson designed uniquely for me.  The way I was living my life previous to this illness was a path of my own making — I was kicking butts and taking names. I was not caring for the others in my life or, least of all, myself.  I don’t want to lose what I’ve learned in any level of recovery.

So, for now, I will continue the practices that have sustained me this far:

  •  A commitment to daily Scripture reading — this has been a calming anchor to my days.  I listen to a daily ‘dose’ on a YouVersion Bible reading plan every morning as I move through my routine.  It’s a small thing that makes a huge difference.
  • Regular visits with my chiropractor and physical therapist who have been my coaches and supporters for going on three years now.  I can’t say enough good about these two.
  • Yoga, a healthful eating regimen, and walking.  Daily intentional care of my physical body helps maintain both my physical and emotional health.
  • Writing — putting my thinking on a page with a commitment to total transparency has been an accountability that contributes to my emotional and physical health.
  • Psychological therapy — a once a week discussion with a trained professional who helps me sort out the healthy and unhealthy messages I am giving myself.  I am always surprised by the interrelationship between physical and mental health; it cannot be overstated.
  • A renewed commitment to prayer — this seems to be the hardest for me.  I am so used to muscling through and finding my own solutions.  Turning to prayer is a highly intentional act right now.  I am praying that it becomes more automatic over time.

I sometimes joke that taking care of myself is a part-time job.  It takes a lot of effort.  However, I have learned that if I have any hope of caring for the people I love or for being effective with my students, I have got to oxygenate myself first.  It’s not selfish; it’s a healthy practice that enables me to do the things I love.  It honors the Creator to care for what He created.

Jeremiah 17:14

Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.

Trials

~ Kristin ~ 4 Comments

One month without writing. I had every intention of jumping back into routines.  Fresh from my time away at the beginning of the summer, I wrote three days in a row, and then the whirlwind — the 5-week summer course I taught, visits from all of our kids and our grandbaby, and a full-family excursion to see both sides of the family.  I might’ve still managed to write a little, but in the midst of all that activity, I did a new medication trial.

My new rheumatologist, who thankfully reasserted my psoriatic arthritis diagnosis, said I should try Cosentyx.  “It’s a relatively new drug,” she said, “and it has helped a lot of people with psoriatic arthritis.”

“What’s the down side?” I asked.

“Nothing!” she assured me.

Skeptical, I did my own research. I googled and queried online groups.  It seemed that everyone agreed with my doctor — the risks and side effects were minimal.

Mm-hmm.

I wish I would’ve gotten a rash. Or stomach pain.  I did get what other patients call, “a temporary spike in symptoms,” but I also had another, more bizarre reaction.

Cosentyx is injectable.  Once a week for five weeks, you use a syringe or a ‘pen’ to give yourself a 150mg dose of this drug. I’m nothing if not dutiful, so I started the day I got home from grading the AP exam.  One quick click in the right thigh.  I didn’t notice anything until the next day when around 4pm I felt like I needed to lie down and be done for the day.  I wasn’t too worried;  I am often tired.  It is not unusual for me to be in my pajamas by 7pm, so I did what my body told me and rested for the next couple of days. Then I was back to normal.

The next Sunday, I did one quick click in the left thigh.  Again, nothing immediate, but the next morning, I got out of bed barking orders, complaining, and overreacting to every little nothing.  Ok, still, I wasn’t too concerned.  I’m known to be a bit crabby, and this ‘mood’, like others I’ve had in the past, lasted about 48 hours and then seemed to wane.

Next Sunday, next click — this time in the belly.  It was the Fourth of July weekend. And I was starting to see a pattern.  I had to teach on Monday, July 3rd for the summer program I was part of.  I got up and grumbled around the house, complaining that I was the only one who had to work, the only one who cleaned up around the house, blah, blah, blah.  My family observed me from afar.  They were starting to catch on, too.  I barely made it through my class.  I was not interested in being there, neither were my students.  I went home and barked at my family and put myself to bed early.  The next day, some friends invited us over to their pool.  I agreed to go for the sake of my family.  I figured I would be less aggressive if I was in front of witnesses. And, these were close friends who were aware of my health issues and also aware of the new drug.  They were champs. They distracted me and fed me and my family.  True heroes.

Next Sunday, next click — the other side of the belly. Again, Sunday night was fine, but Monday morning I was already in a funk when my husband called me from his annual physical to tell me that he had to go to the ER for an EKG.  I rallied the troops — I sent my kids to him while I readied myself to teach and pushed pause on my emotions.  I transitioned to full soldier mode when he called again and said he had to have a heart catheterization right away.  The next twenty-four hours, which had been the hardest on this med in the previous weeks, were a whirlwind of distraction.  My husband’s tests eliminated heart disease and any blockages and suggested the need for my husband to go on — wait for it — a medication trial.  (He has had not further symptoms, thankfully.) By the time he was home from the hospital, it was Tuesday night and I was almost back to normal.

Next Sunday, next click — back to the thigh, but this time, we had a house full of visiting family.  I had no issues on Sunday night.  Maybe I would be ok.  After all, during the previous week with the medical distraction, I had kept my rage in check.  Certainly I would be able to control my tongue in front of house guests.  Nevertheless I warned them in advance while hoping for the best.

It came out of nowhere.  Unbridled venom.  I spewed.  Then the backlash of remorse and embarrassment.  Apologies, and then, wham! The second wave.  I felt desperate.  I mumbled explanations and left the house.  I was going to isolate myself until the storm passed.  I spent the next six hours alone.  I had a book, but I couldn’t read.  I had my laptop, but I couldn’t write.  My mind was swirling frantically.  I worried over every decision past, present, future.  I cried.  I raged.  I fumed.  It was terrible.  After dark, I slithered back home, showered, and put myself to bed.

The next morning, we attended a funeral for a friend where tears released any remaining emotions, then I taught my class.  Afterward, I made a meal, and by dinner time I was able to join the family around the table.  I was still careful to speak very few words for fear of saying something barbed or pointed.

By the next day, Wednesday, I was pretty much back to normal.

I am now two weeks away from the last dose.  And two weeks away from the next dose. After the five loading doses, I switch to once-a-month injections.  I’ve called my doctor. She’s “never heard of” this type of reaction.  I contacted the manufacturer.  They are “following” my case.  My doctor wants me to continue the course, if I can, to see if Cosentyx will eventually help me.

That’s the other kicker.  This med does not give immediate relief from pain, fatigue, or psoriasis.  People have varied results.  Some have noticed improvement after the loading doses.  Some after the third month.  Some after the — gulp — eighth month.

Is it worth it?  I don’t know, because right now I don’t have any relief.  None.  I had, as I mentioned, a spike in my psoriasis, pain, and fatigue. That, coupled with the bizarre emotional reaction, is what I have noticed as a result of this medication.

Nevertheless, I am going to press on.  I am going to take the next dose and not plan anything for the two days after the injection.  We are going to watch and wait.

Why? Because I am still hopeful that something is going to work.  I still believe that at fifty-one years of age I should be able to live a full life.  I still want to teach during the day and go out to dinner with friends in the evening.  I want to be able to have Bible study with the girls in the morning, teach my classes, and then be conscious for dinner with my husband.  I am hopeful that I will be able to lie down at night and sleep without groaning every time I have to reposition myself.

It feels a bit selfish when I put it like that, I guess.  I mean, psoriatic arthritis is not life-threatening.  It is only life-altering.  And, as I have mentioned in this blog, my life did need altering.  I am not angry that I have this disease, but I do want to pursue a path to healing. And, I think, for me, the healing may need to come slowly so that I don’t abandon all the lessons I have learned in this chapter.

 

 

Romans 12:12

Be joyful in hope, patient in affliction, faithful in prayer.