Breaking Up Is Hard to Do…

As many of you who have followed my journey with Crohn’s know, when I was first diagnosed back in January 2017, I was put on two different medications, an immune suppressant called Imuran, and a TNF blocker (also called a biologic) named Inflectra.  At the time I was told that if all went well, I would be taken off Imuran at the year mark as staying on it long term can be dangerous, and continue with Inflectra for life.  Through lots of prayer and a complete diet change, by the year mark, my numbers looked good enough that my GI gave me the green light to discontinue Imuran.  At the time I was so excited about this!  No more having to worry about going out in the sun and blood tests every three months to check my liver enzymes.  I was also hoping that stopping this drug would help my bladder issues (which I’ve since found out is probably interstitial cystitis, another autoimmune disease.  I’m still waiting to see a urologist to confirm my GP’s diagnosis).  What I didn’t know was that this would be the worst break up ever…

Fast forward to three weeks later and I began getting little itchy red bumps on my hand.  Now, skin issues are nothing new to me.  I use to get eczema/psoriasis flare ups as a kid but they always responded to topical treatments and never lasted more than a month at most after starting topical creams.  This time, nothing was touching it and each week that the Imuran was waning from my system, the bumps seemed to spread more.  After another infusion of Inflectra, it had turned into the worst psoriasis flare up I’ve ever experienced.  Yup, I am one of the lucky few to get biologic induced psoriasis.  This has begun a series of very difficult conversations with my GI.  I can’t get into a dermatologist until July but in the meantime we need a solution.  Right now, he has put my next infusion of Inflectra on hold but my next infusion is only supposed to be May 29th anyway.  In the meantime, I have an appointment with him on May 7th where a final decision will be made whether to stop Inflectra completely or not.  Here’s the catch: even though the psoriasis was most likely induced by Inflectra, there is no guarantee that stopping it will clear up my psoriasis.  We could try another biologic but there is no guarantee that I won’t get side effects from them either or that they will be as effective in controlling my Crohn’s.  So then what is a girl to do?

Feeling at a loss, I turned to the internet to see what other people in this situation have done.  You know what’s interesting?  Imuran and Methotrexate (another immune suppressant and chemotherapy drug) have been widely and successfully used to control severe psoriasis.  Huh.  No wonder I wasn’t having my usual off and on skin issues while on it.  The problem?  My GI doesn’t want me to continue taking it and for good reason which means I have to make a solid case at my upcoming appointment.

So what’s the point of me sharing all this?  I would like to ask all of you for prayer and wisdom for my doctor and I as we decide what the best thing is to do for my health.  But more than that, pray that God, the greatest healer there is, would strengthen me with His healing power that way He did through my Crohn’s flare up and my battle with C-diff.

Thanks again for listening and for your continued prayers.

 

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