Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Renewed Hopefulness starting a new medication

After months, or sometimes years of searching for an answer to why you are sick, it is not uncommon for you feel a sigh of relief when you are given a diagnosis of an autoimmune disease, fibromyalgia or CFS.  It can be a huge relief to have a name for what has been ruining (and running) your life! Then begins what will become a long list of medications that you may have to try before finding something that works for you.

Each person reacts differently to each medication, even within the same diagnosis.  What works for my Still's Disease, may not work for your Still's Disease, and what works for one person's Lupus may not work for another person's Lupus.

After trying a laundry list of medications such as Humira, Enbrel, Kineret, Methotrexate among others, I am ready again to try a new (very new) medication.

Xeljanz was only recently approved by the FDA for treating the Rheumatoid family of illnesses.  This gives my husband pause, because, like many of the medications already mentioned, there is some fine print to read that states that there is an increase in certain kinds of cancers in people who use these medications.  Now, whether it was the medication that caused the cancer, or the person's messed-up immune system that allowed the cancer is any body's guess, but the drug manufacturers have to state the risk either way.  Something important to consider when deciding to try a new treatment.

People who are not disabled from their job (and their life) at an early age may find it easy to say "why try something that could give you cancer?" It is those of us that find ourselves side-lined from our own life that are making the decision!  Only we can decide how crappy we feel (You will see me use my own term here in these blog pages "crap-o-meter", which is a scale from 1-10 which describes how "crappy" I feel at a given time on a given day".  If you live at a crap-o-meter reading of 3 or 4 you might be able to still work, but if your crap-o-meter hangs out at 8 or 9, you probably can't do a whole lot! A crap-o-meter reading of 10 buys you a ticket to "the resort" (as my friend Kirk lovingly describes a trip to the hospital).

So how do you decide if your crap-o-meter is high enough to warrant trying the "next new thing" in the pharmaceutical world?  I can't answer that for you.  I can only answer for myself, that my crap-o-meter has been consistently at about a 7 most days.  For me, this means that while I am able to take a shower without assistance, I must lay down for 10-20 minutes to rest myself before attempting to get dressed. At a "7" I am able squeeze in a a few minor chores around the house, but must sit down to rest in between.  It also means I'm feverish from about 4am until about 1 or 2pm.  While my fever settles down after that time, it will still bounce up on and off throughout the day.  I also use pain as an indicator of where my illness is.  Currently, I need narcotic pain management.  Not only do I need it, I can't even take the amount that I would need to get my pain low enough to feel well because it makes my head groggy! So I take my pain medication, but I will never be "pain free".  I can tolerate a pain level of 4/10 and still get things accomplished. Another symptom I have been hoping for help with (to no real success) is a rash that has plagued me for the last two years.  I've been to dermatologists and an allergist, and while they can treat the itch and help clear up the patches, they have been unsuccessful in preventing more patches from cropping up!  Other symptoms that I use to determine my crap-o-meter reading are how many of my joints are swollen and painful and have a loss of range of motion.  Those joints are the source of some of my pain, but it also seems like an "all over" pain.  Kind of like you feel when you are coming down with the flu! 

The crap-o-meter changes throughout the day.  When I wake up anytime after 4am, I would say I'm at an 8 or a 9 on the crap-o-meter.  My fever is high and my pain is extreme.  I am slightly comforted to know that my fevers are cyclical, meaning that by noon my fevers come down.  With my fever retreating at noon or so, my crap-o-meter reading also drops to about a 7, and in the evening, I am blessed to get to about a 6.  These numbers, to me, indicate that I might have a better quality of life on a medication. These symptoms all played over in my mind and helped me to  decided to give Xeljanz a try. So....

It has been one month and I am pleasantly excited!  My rash was gone after only TWO WEEKS!  My fevers are down.  My thermometer has not seen the "98" range in literally years!  And my stamina is starting to improve!

A big sign of improvement came yesterday.  After a dear friend suffered a horrible family tragedy, I managed to get through several very long days in a row. I came home and did not have to climb directly into my bed!  Even my temperature remained normal! I was tired, but it seemed like a normal response to some very sad and stressful days. These are all positive things!  I did, however, need to sleep for 11 straight hours before I was able to get myself out of bed today; but even that seems like an improvement to me!  I got up late, but I did not have a fever! 

I feel hopeful for the first time in a looooong time, that I may soon be ready to take JUST ONE day of work per week in the near future!  OK, so it really is too soon to be filling out applications just yet, but I find myself daydreaming of the opportunity to one day soon, become a productive member of society!  And then, at parties and events, when someone asks me what do I do for a living?  I won't have to say I'm "disabled"!