Limited Choices, Scary Medications, and Other Nightmares

In the last 50 of 60 years, there has only been one new medication developed used for the treatment of Lupus. Most of the medications that are currently used to treat Lupus are actually medications that were developed for other illnesses. All medications that are used to treat Lupus only address symptoms. There are no medications that can correct Lupus or address the disease directly, not yet anyway.  

I'm just learning about the medications, so this information is not comprehensive, but here is a taste of what choices I have been faced with so far. The Plaquinel is a "tier one" drug, I think that is the first one that gets tossed at us, but cause the list of side effects and risks are not as scary as the "tier two" drugs. However, the list was scary enough for me.  I've been taking Plaquinel for a few months, but I have a slight allergy to the medication. I break out in hives all over my body if I try to take the full dose for very long.  My Rheumatologist has suggested moving to Imuran, a "tier two" medication, but it's just too scary for me to commit to at this time.  

The point of taking any of these drugs is to suppress the malfunctioning immune system.  When the medication works, the symptoms of Lupus are reduced and I can function with less daily pain and discomfort, I have energy enough to make it a full day at work, my skin lesions clear up and I feel fairly normal for weeks at a time. Feeling normal has not happen for about 2 years now, so I was pretty stoked when the Plaquinel caused a real improvement in my daily life. I was in tears when I called my Rheumatologist and he said I should try another medication, a "tier two" medication, one that is listed as a known carcinogen  one that has side effects listed that may cause sorosis of the liver, or leukemia, just to name a few of the really ugly ones.

After doing some research and asking a lot of questions, both of my Rheumatologist as well as MyLupusTeam.com forum, I came up with an idea. Although it's not normal, my Rheumatologist is letting me try Plaquinel at a lower dose to see if my body can find a happy balance between the drugs effectiveness and my body's allergic reaction. I'm thankful that my doctor is willing to try this and is interested to see if this works for me. I've only been doing this for a few weeks, so the jury is still out on this little adventure. 

So here I am, crossing my fingers, hoping that my body will respond well and I can hopefully get back to a mostly normal life.  

Below are some links to the side effects and risks of some of my personal options for treating my form of Lupus. Please proceed with caution, this information may give you nightmares. 

Plaquinel side effects and risks:

http://www.drugs.com/sfx/plaquenil-side-effects.html

Imuran side effects and risks:

http://www.drugs.com/sfx/imuran-side-effects.html

Bynlysta Infusions side effects and risks:

http://www.drugs.com/sfx/benlysta-side-effects.html

If you take a fall in a parking lot, and no one is there to see it, does it still hurt? Why, yes. Yes it does.

As I am learning about Lupus and how my body responds to, the disease, the medications, the trauma, the stress, and the every day events of life, I am asking myself a lot of questions. When a new symptom pops up I start looking back at my activities, diets, exposures, expenditures of the last two or three days looking for a trigger. Did this thing cause that reaction? Did that meal trigger this symptom? If this symptom started today, what did I do yesterday? As well as many other questions and guesses.

For example, last Thursday I took a fall in the parking lot where I work.  It wasn't that bad, I just slipped and landed in the flower bed. I didn't even get a bruise. But as the day went on, I became a bit sore, then a bit stiff. By the time I finished my work day and made my way home I was looking like an old woman, and on top of that I had an upset stomach, clamminess, faintness, and fatigue. It's the fatigue that clued me in.  Fatigue is one of the biggest challenges we face with Lupus. You just can't keep going like you did when you pulled all nighters in your 20's. It's not like you're tired, it's so much bigger than that. Its like you can't keep your eyes open, your body is weak, your muscles weak they are unable to lift your body from a chair, or carry a purse. It is such a helpless feeling, and it is really scary.  

It took me some time to look back at my day and go though the things I did and the things I ate, before I figured out that it was probably my graceless fall in the parking lot.  But then I start thinking, did the Lupus cause the fall, or did the fall cause the Lupus flare?  If the Lupus caused the fall then things get scarier, has the Lupus progressed to my nervous system?  Is that why I fell? It's the "which came first, the chicken or the egg?" question. I feel like a detective trying to solve a mystery but who finds herself thinking in circles. 

When these unexpected triggers happen, like my parking lot tumble, it's much more difficult to make plans. Planning my life, keeping my work commitments, engaging with my friends and loved ones seems to get harder and harder. I'm still hopeful that at some point soon I will find a balance with  work, medication, rest, limits, that I can live with.  Here's hoping.