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Up the Down Staircase

I celebrated an anniversary in November 2018.  A minor one for most people but for me it was a big deal.  That was the sixth anniversary of using my current biologic medication.  Seven years ago things were a mess.

How did I come to be on my current biologic for RA?

In 2012 I was writing my dissertation and closing in on approval.  I had started the dissertation while recovering from hip replacement in January 2012 and that summer I pressed hard to completion.  In October of that year, I had an unusual reaction to the RA medication I was using, and that reaction caused my doctor (and I) to withdraw future use of TNF inhibitors.  That meant I had to change my biologic medication.

While I felt awful, I was not happy with the choices offered at the time.  I told my doctor I would need time to consider the options including not using a biologic medication until an additional non-TNF inhibitor was introduced.  The doctor and I discussed that I had already failed the one JAK inhibitor that was on the market, so that was not an option for me, and I had two ways forward.  I could use the remaining type of medication or I could go without, use NSIAD’s and DMARD’s and hope for the best.  It was an awful conundrum.  I chose the NSAID and DMARD option at least for a time.

Within three weeks I was suffering so badly I scheduled an appointment with the rheumatologist, and we started the march to the new medication that just a month before I was reluctant to use. That was when it struck me; I was traveling up a down staircase.

Choice made

As my health was failing, I reached out for the last thing that I hoped might help me.  I had little choice in the matter.  I felt I was going downhill so fast that I could not even wait for the regular three-month appointment.  That was the down part of the staircase.  I could have thrown up my hands and said I would hold the line and not succumb to the temptation of using the new medication.  But frankly, I really could not do that.  I had no idea what the end might look or feel like, but I certainly knew that if I did not give in, I would find out.  My only choice was to try to go up the staircase.

The medication seemed scary; I had often thought what would happen if that was all that was left?  I decided years before I would do anything never to use it.  Those words were all nonsense.  The pain and disability of doing nothing were far worse than anything I feared.

Medication decisions can be difficult

The thing about the down staircase is that you never really know what it will take to get back to being a functioning human.  Yes, the new medication had the potential to pull me up, but then again it had every possibility to make the decline even worse.  It was like standing on a stairway, and going both up or down  were unknown.  Trying the medication was unappealing, but doing nothing meant misery as I descended down the staircase to misery. and sufering

 

In my case, the new biologic did slowly pulled me back up.  It was my lifeline that kept me from hitting the imaginary bottom.  It was a close call. I am sure something would have come along eventually, but when you are at the end of the line, and there is only one more option, it is a terrible feeling.  It gave me a deep appreciation for people who have reached the end of that line.  I gained a new respect for the terror that being at the end of the medical supply line instills.

That experience reminded me that no matter how secure we feel with our current treatment, we are only a small step away from going down the up staircase.  That is a direction no one wants to traverse.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • EmmaCB
    3 months ago

    Great post and metaphor.

  • BeckyKay
    3 months ago

    Congratulations Rick! Having also experienced the “last resort” rituximab, it’s very scary while waiting to determine if treatment is working. May you and I both have at least a few more successful years. Becky

  • rarara
    3 months ago

    rituximab is the best for me so far.
    at 25 months after dx, starting rituximab is THE BEST for what my rheum calls “the most severe case of ra we’ve seen in more than 10 years” & another rheum said to me ” man, you almost died of a disease (ra) that almost no one ever dies of anymore”

    methylprednisolone, hydrocortisone, methotrexate,
    enbrel, adalimumab, abadacept…

    finally,

    rituximab, “the pain blobs” became hands and feet again, & happy to work 4 hours twice a week, can sit thru occ. dinner fairly comfortably, faithful to yoga & riding my gentle rescue mare.

  • Lawrence 'rick' Phillips author
    3 months ago

    thank you for your comments. I did not place the name of the medicament in the blog, but I see it was found out. It is a great medication for me as well.

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