The Scoop on Treatment

I've had several people ask me how treatment is going lately, which made me realize I've been terrible at keeping people informed...

Currently, treatment is not going.

Once I was finally diagnosed with UCTD, my doctor had me start taking Plaquenil (hydroxychloroquine).  Plaquenil was originally used (and still is used) to prevent and treat Malaria, but it is now also used to treat some autoimmune diseases.  It's a pretty safe medicine and is usually tolerated well by people... unless you're allergic to it, like me.  We tried it again after a few weeks, hoping that I just happened to have a random allergic reaction to something else at the same time, but it is definitely the Plaquenil that I'm allergic too.

Before we considered any other treatment options, my rheumatologist and I decided that I should ween off of Cymbalta, seeing as it wasn't doing anything except making it impossible to poo.  I was originally put on it in August 2012 to see if it helped with the pain.  It's often prescribed for people with fibromyalgia and can greatly reduce their pain, so my neurologist thought we'd give it a try... unfortunately, my neurologist didn't inform me that Cymbalta is ridiculously difficult to get off of.  There are only 2 dosing options for Cymbalta (30mg or 60mg), which makes "weening" difficult. I was already on the smallest dose, so I just increased the time between doses each week (24 hours to 36 hours to 48 hours).  Switching to every 36 hours gave me terrible vertigo, which got worse when I switched to 48 hours.  Taking it every 48 hours just seemed to put my brain into a 48 hour cycle of feeling fine for the first 24 hours and feeling horrible for the next 24 hours, so we decided to just stop it completely after 4 days of that.  The next 2 weeks were filled with vertigo, nausea, horrible tingling/itching, "brain zaps," insomnia, and crazy mood swings.  It turns out that I was experiencing "Cymbalta Discontinuation Syndrome" which is known for being horrible (and it was super horrible), but if you are reading this and are on Cymbalta, don't freak out!  Apparently, switching to a drug with a shorter half-life, such as Prozac, can reduce (and in some cases, even eliminate!) discontinuation syndrome.  If only I knew that earlier... but at least I can poo now.

The original plan was to contact my doctor to talk about other treatment options as soon as I was off the Cymbalta and feeling more like a human being rather than a dysfunctional zombie , but then I got tonsillitis and had to wait until that was better, which took a little while.  As soon as I got off the antibiotics, the UCTD flared and I started experiencing new (and weird) symptoms (such as an inability to open my mouth when I woke up in the morning due to my lips deciding to seal themselves together overnight... I was scared the first morning that happened, but it's really just severe dry mouth which is a classic UCTD symptom).  My rheumatologist happened to be on vacation, so I just waited it out with the help of ibuprofen (for the pain... not the mouth. Ibuprofin isn't that awesome.).  Unfortunately, Tylenol (which is better for my stomach) doesn't  touch the pain when it's really bad.

Now, I am hoping to get an appointment with my rheumatologist soon to talk about new symptoms and treatment options.  Without treatment, I am still getting fevers and severe fatigue everyday, with the other symptoms (muscle pain, joint pain, bladder problems, headaches, rashes, etc) flaring up here and there randomly.  My intestines have also decided to purge their contents excessively every day again, but I am still celebrating not being constipated.  I will be seeing my GI doctor this week, so we can have a nice talk about the runs then, because getting sick to my stomach every day probably isn't helping with the fatigue.  My rheumatologist has talked about putting me on Methotrexate, but he's bummed that I'm allergic to the Plaquenil because that is much safer than Methotrexate.  Methotrexate is used as chemotherapy for cancer along with treatment for some autoimmune diseases, because it kills bad cells (in my case, the crazy immune cells).  But in order to kill bad cells, good cells also have to be killed (that's an oversimplified description of what actually happens...).  That's why we need to discuss the benefits and risks of it with the doctor rather than just starting treatment.

Hopefully, all of that makes sense to people who don't have to know all of this medical stuff.  It probably sounds really sad, but I want everyone to know that even though the past few months have continued to be very rough, God keeps providing me with everything I need to stay joyful and sane, as much I hate having an autoimmune disease and feeling like crud everyday.  Even on the most terrible days, I know that God is with me even if I don't understand why stuff like this happens to people.  I am planning on starting physical therapy school at Upstate Medical University in June, and I am pumped about getting to be on the other side of the medical field some day, where I can help other people with pain, injuries, and illnesses.  Some days I don't know how I'm going to do it, but I just keep praying that God will bring me where He wants me.  He's already brought me through so much that I couldn't have gotten through without him, so I know that I don't have to doubt His ability to... well... be awesome.  Because He is awesome.  Meanwhile, I greatly appreciate your prayers!  I know that God can heal me in an instant if that's His will, but I also need prayers for wisdom about treatment and all of that fun stuff.  Thanks for caring about me!  You guys rock.