Another Health Update

So.. I started the Imuran and very quickly my body let us know that the drug was not going to work for me. I have a lower level of TMPT, which means I am at a intermediate risk for the Imuran causing bone marrow toxicity, which we found out about a few days after I started taking the meds. About the same time we found out about the TMPT levels, I all of a sudden at lots of bruises. I knew what they were all from, but it was all from bumps that should not have given me bruises. My rheumatologist had me stop taking the Imuran because the bruises, along with the extreme fatigue, were signed that my body couldn't handle it.

I went back in a few days later to discuss other treatment options. She gave me a few different options of chemo drugs for me to pick from, but her suggestion was to try methotrexate next. I had to wait for couple weeks for the Imuran to be completely out of my system and I had to wean Peyton from breastfeeding before I could start, so I had a bit to decide which option I wanted.

I started the weaning process with Peyton right away. It was a lot easier than I thought it was going to be. I really wasn't ready to be done nursing, and neither was he, but we have pushed through it and it's been a few days since he nursed! (For the record, I breastfed for a total of 64 months! And if you count the months twice that I was nursing two kiddos, it's 91 months! That's a lot of breastmilk!!!)

I decided to go with my doctor's suggestion of the methotrexate and took my first dose on Sunday night after Peyton nursed for the last time. I had an upset stomach on Monday for most of the day and Tuesday felt like I had gotten run over by a train until lunch time or so... so overall, the side effects haven't been too bad yet. Hopefully it stays that way. With methotrexate, you only take it once a week. From what I've read, lots of people have a day or two of feeling icky or off after taking it, but then are good the rest of the week.

Since I've last posted, I've also seen the cardiologist and the neurologist.
The cardiologist said that the calcium channel blocker I started taking the January appears to have helped resolved the arrhythmia and tachycardia I've been experiencing. So... for now, as long as I stay on that medicine, my heart seems to be good!
The neurologist upped my dose of the calcium channel blocker. While it has helped my heart and my everyday headaches, I'm still having more migraines and neuro issues than they would like. So far, I've been on the higher dose for a few weeks and I have noticed a difference in my neuropathy, tremors, and vision disturbances, and the migraines haven't been as horrible.. so I'm hopeful that as my body adjusts, I will see even more improvement. If not, we'll up my dose again and go from there. She also is pretty sure that once we get my lupus under control and my immune system leaves my CNS alone, that most of the neuro issues should go away and I should be able to stop taking some of the meds!

So.. for now, I'm hopeful that we have found a good treatment plan for the time being... and if it doesn't work, there are a whole lot more drugs to try.
I'm trusting in the fact that God's in control...even of my crazy out of control immune system!

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! 

Finally an Answer!

After months of tests, doctors appointments, horrible migraines, fatigue, a miscarriage, numbness and tingling, pain, and lots of other weird symptoms...and lots of questions without answers (or wrong answers)... I finally have an official diagnosis.

I have systemic lupus erythematosus (SLE or Lupus for short).

According to Google...
Lupus is a chronic autoimmune disease in which the body's immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs.

As of right now, my lupus is affecting my joints, my skin, my hair, my nervous system, my kidneys, my heart, and my white blood cells.

The rhuematologist says that my lupus would currently be classified as moderate on the spectrum from mild to server. 

She has prescribe plaquenil to start with. I go back in 8 weeks for a follow up and to decide if the plaquenil is working or if we should try something else. 

The plan is to try to get everything under control with meds and them use a more natural approach to keep it under control.