Thursday, February 9, 2017

Lupus Update

It's been six months since I was diagnosed with Lupus. 

Six months ago I started treatment with a medication called Plaquinel. It's an anti malarial drug that is often used to treat lupus. It helps protect organs from damage and can help "control" the immune system. After a few weeks, I started to see improvement in how I was feeling and was excited that the plaquinel seemed to be working and was hopeful that I wouldn't have to take other stronger (scarier) medicines.

Along with medicine and vitamins, I've made some other changes.
Because my kidneys were hurting often, it was suggested to increase my water intake. I stopped drinking anything besides water and one cup of coffee a day. Most days I drink between 125 and 150 oz of water (and I pee a lot!). 
I've also learned that some foods make me not feel very good the next day, so I've be trying to avoid those and find some healthier options. 
I started exercising on my good days and noticed my joints stopped hurting as bad. I'm now exercising six days a week most weeks and really notice if I miss more than one day in a row. I'm sleeping better too, which I'm pretty sure is a result of exercising! 
Over time, I went from having an average of one "good" day a week to having a few bad days every couple weeks..... and I've lost over 30 lbs and down 3 pant sizes! 

In the end of December, I had a follow up with my neurologist. I was having headaches still a few days a week, but thought I was only having migraines every few weeks. I was having some of the migraine symptoms (numbness and twitches) more often though. The neurologist explained that these are still migraines even though they don't have the pain and are most likely caused by my lupus. So, he wanted to start me on a medication called verapamil to help reduce my symptoms. So far, the medication seems to be helping some, but I'm assuming my dose is going to be upped when I go back in a few weeks.

In the beginning of January, I saw the cardiologist per the request of my rheumatologist. I was diagnosed with palpitations and tachycardia. My heart rate seems to not have any rhyme or reason. At times it's "normal" and other times its 180 bpm while I'm resting. He also said I most likely have vasculitis. He was going to suggest taking verapamil, but saw the neurologist had recently prescribed it. Verapamil can lower blood pressure, and since mine is normally low, he said the small starting dose was great and that we could slowly increase if needed to help my symptoms as long as it didn't lower my blood pressure too much. (It hasn't, I've been monitoring it every couple days at home.) He also ordered a heart monitor for me to wear for 30 days to see if we could get a better idea of what was going on with my heart. I finished my 30 days on Monday, and go back in a couple weeks to get the results of that. 

In the middle of January, I saw the kidney specialist. My kidney function has been low, I've had lots of kidney pain, and a few kidney stones. He ordered some blood work and a 24 hour urine analysis. I'm still waiting for my kid to come in the mail, but hopefully in a few weeks, we'll have a little better idea of what's going on with my kidneys.

On Tuesday I had a follow up appointment with my rheumatologist. The plaquinel should be in full effect now and since I'm still having some pretty bad days, she thinks it's time to add another medication to my treatment. This morning I started a medication called Imuran. Imuran is an immunosuppressant and is considered a chemotherapy drug. Small doses of it are used to treat lupus in hopes of suppressing an over active immune system attacking healthy cells and tissues. 

So... while I am feeling better most days, I'm still apparently pretty sick. 

Being on an immunosuppressant is kind of scary. I can get sick very easily and even something as simple as a cold can get bad enough to put me in the hospital if I'm not careful. (So please don't share germs with me if you're sick!!) But... hopefully it won't make me feel too icky and it will help get my lupus under control and make me healthy again!