Pills, Pills, and More Pills. Part 2

Gotta find it fun somehow! ;)

After receiving my med list from my nephrologist, Jared and I spent the next 3 days trying to create a schedule for my meds(he is so great at stuff like that). It was CRAZY to try and figure it all out! Here is kind of how it went:

Cellcept, that I have to take twice a day, has to be taken on an empty stomach 2 hours after eating and an hour before eating. It cannot be taken within 3 hours of the zantac. Prednisone needs to be taken with a meal and is best to take in the morning. Zantac should be taken with the prednisone first thing in the morning so it will help with the side effects. Lasix, taken twice a day in the beginning, needed to be taken sometime in the morning and afternoon, just at the right time so my swelling wouldn't get out of control, but not at bedtime or I would be peeing ALL night! Bactrim MWF whenever. Tums same. Lisinopril best at night. 

WHEW!! This literally took days to get right! I finally have a pretty good routine! But let me tell you, it sure does stink to have a pill control when you can and can't eat!!

Through this, I have learned just how important it is that when I send patients home with their med list, I need to give them details and make sure they understand things completely!

I'm not blaming anyone, but want to let you know how important it is that we know the details of the medications and treatments we take. No doctor, nurse, or PA told me about side effects, interacting medications with one another, when to take them, when not to take them, etc. I'm glad I wanted to know the details of what I was taking. KNOW WHAT YOU TAKE, HOW TO TAKE IT, PRECAUTIONS and SIDE EFFECTS OF YOUR DRUG! Because, someone may not tell you. 


I had some anxiety (thank you again prednisone)about how the heck I was going to remember taking all these pills! One evening, when I was in denial about my disease, I and wanted to be "normal". My mom, grandma, sis, aunt, cousin and I went out to a movie and dinner. It was a wonderful time! On our way home, my sis INSISTED we go into Walgreens and buy a pill organizer! I don't know what I would do without my nifty organizer divided into AM and PM! Plus, I can remove a day and put it in my purse if I'm going to be out when I need to take it. I really should have got the one for Morning, Day, Afternoon, and Evening because I was taking pills at least 5 different times a day in the beginning. I refused to go that far. The thing was the size of a laptop! Lol.  

My glass cabinet has now been converted to my med cabinet. And this is how I spend my Sunday afternoons; watching the Browns and getting my pill box together for the week! Lol. What an exciting afternoon! ;) The little red thing in each photo is a pill cutter from my grandparents. They had an extra one laying around and I needed one! Hehe. 

As much as I HATE taking pills, I am glad they are working and I know this is just for a time. We are so blessed to have insurance through the hospital! For example, here is the label from one of the meds I take:

That is for a 2 month supply. Is that not crazy?! I told my doctor how much insurance saved me and that I still had to pay close to $300. He was taken aback. Speechless. I asked him what people were supposed to do if they didn't have insurance coverage. He said he didn't know. I said, "well, I wouldn't be taking it!"   

My goal is to get off ALL medications and try to control my lupus as natural as possible. I pray I won't have to go through much trial and error. I try not to think of the long term side effects that some of these medications have. Because quite frankly, they scare me. 

Pills, Pills, and More Pills. Part 1

The week after my IV steroid treatments I had a follow up with my regular nephrologist. I hadn't seen or heard from him since my biopsy because he was on vacation right after the procedure. I dropped Elin of at my sisters house and headed to my appointment. Jared of course wanted to come and hear what he had to say. I was NOT feeling better at this point and wanted to know why. I had that huge dose of steroids that weekend! Why wasn't I feeling better!?! 

I was seeing my nephrologist every 2 weeks then and having blood work done every week before the appointment to check my kidney levels among other things. Now I go every 6 weeks, yay, I've made progress!

He started discussing my progress and my treatment plan based on my lab levels and controlling the lupus. I told him my blood pressure had been running high (which it was that day at my appointment).

He started telling me about the meds he wanted me on. Then said, "umm, I better write these down." Oh boy, I knew I was in for quite the med list!

Prednisone 60mg daily, taper to 50mg daily. As I posted here on Monday, the prednisone is used to reverse the kidney damage. You MUST taper off steroids. I am on 10mg now with pretty minimal side effects compared to when I was on 60mg. I cannot WAIT to get off it!

Cellcept 250 bid (this means twice daily) week 1
         500 bid week 2
         1000 bid week 3 = This is my current cellcept dose.
I have been on this dose since May. When my doctor first told me he wanted me on this drug it had sounded very familiar to me. I quickly remembered having a patient that was taking it who had just received a liver transplant. This drug is given in patients who receive transplants to keep their body from rejecting the organ. I was a little confused as to how this was going to help me. Was he preparing me for a kidney transplant? No.  

Basically, cellcept is an immunosuppressive. In lupus patients, during a flare, the immune system is going CRAZY, as in, hyperactive. The tiger needs tamed!! That's where cellcept comes in. For all my medical buddies, here is more detail on cellcept: http://www.drugs.com/cellcept.html

Bactrim DS 1 tab MWF. This is an antibiotic taken 3 times a week as a preventative to infections. I take this because both the prednisone and cellcept are suppressing my immune system, making me VERY prone to infection. So far, during my treatment, I have only had ONE infection in June. My doc quickly put me on another antibiotic for 5 days and the cold only lasted about a week. As soon as I show ANY signs of infection; fever, chills, green/dark snot or phlegm, sore throat, etc. I MUST call him right away and get put on yet another antibiotic.

Lasix 40mg BID There were some days where I really wanted to overdose on this med. Not to kill myself, but because the swelling was SO bad and painful, I wanted it GONE! 
I am not on this anymore. I stopped taking in June because my swelling was GONE!!

Lisinopril 10mg daily. I had to increase to 20mg because my BP was not controlled on the 10mg. I'm only on 5mg today! Yay! (I'm still on a higher dose than my grandma though! Ugh! Lol) My BP became elevated due to the prednisone, but more so from the kidneys not doing their job.  

If the flow of blood through the renal arteries decreases for any reason, the kidneys can be tricked into thinking that blood pressure is too low. The kidneys detect this decrease and release the hormone renin in an attempt to raise blood pressure and restore normal blood flow. Problems arise when the decrease in blood flow is not actually caused by low blood pressure. In these cases, the kidneys end up raising blood pressure to very high levels in order to push more blood through the narrowed renal arteries. http://highbloodpressure.about.com/od/associatedproblems/a/renovascular.htm

Zantac 75mg daily. This was a requirement for me every day! The prednisone ate up my stomach so terribly! The pain was unbearable at times! Since I have only been on 10mg for about a month now, I do not take is every day. Still, there are days that I feel that pain coming in the morning and have to take one. Nothing compared to before though!

Tums ES 600g BID I took this to help with the above ^ problem. Stomach issues. But also, to increase my calcium level from the prednisone that was depleting me of it. 

As my doc was going over all the meds, adding and adding, I could not help but become overwhelmed. My eyes filled with tears as I thought about how quickly my life was changing. From never needing any kind of medication to a bazillion pills! (Ok, exaggeration). Not only was I overwhelmed with the pills, but also his explanation of the kidney damage and how bad it really was, that I was going to be off work for months, and that the lupus was a pretty big deal, more serious than I thought. Hello denial? Maybe. I asked him why I was feeling worse and not better after the IV treatments. He told me that it just wasn't that easy for my kidneys to heal based on how badly they were damaged. 

Because of my amazing God and wonderful family and friends who have encouraged me, I am not going to let this disease define me. Who I am is not found in a disease, but in WHO I am in Christ! I am His and He is mine. No one can take THAT away! 

Think about your current struggle. Are you allowing it to define you? Let Him have it!

"Who I am is not found in ________, but in who I am in Christ!"

Who are we in Christ?  

I have the mind of Christ (1 Corinthians 2:16; Philippians 2:5).
I can do all things through Christ Jesus (Philippians 4:13).
I have the peace of God that passes all understanding(Philippians 4:7). 
I am more than a conqueror through Him Who loves me (Romans 8:37).
I am the light of the world (Matthew 5:14).
I am forgiven of all my sins and washed in the Blood (Ephesians 1:7). 
I am healed by the stripes of Jesus (Isaiah 53:5; 1 Peter 2:24).

I am greatly loved by God (Romans 1:7; Ephesians 2:4; Colossians 3:12; 1 Thessalonians 1:4).
I am strengthened with all might according to His glorious power (Colossians 1:11)
I press on toward the goal to win the prize to which God in Christ Jesus is calling us upward (Philippians 3:14).
For God has not given us a spirit of fear; but of power, love, and a sound mind (2 Timothy 1:7).

It is not I who live, but Christ lives in me (Galatians 2:20).

...and oh so many more here! 

Prednisone: How Can Such A Little Pill Make Me So....AHHH!!!

After my IV steroid treatments of 750mg x3 days I tapered down to 60mg Prednisone daily. (Prednisone is the name for the oral form of steroids where Solumedrol is the name for the IV form)

I knew some of the side effects of steroids. I had seen the effects first hand, and had also heard of some of the side effects from patients and friends who had been on high doses. 

Right after my IV doses, the only thing that I started experiencing was lots of energy early in the morning. I would wake up around 4am every morning, ready to get moving! This started to get very frustrating because by the time Elin woke up I was getting pretty exhausted.

My mom had received an email from a friend of ours at church who had undergone a kidney transplant due to kidney failure. I wrote about him a little here. He had been on high doses of steroids as well and wrote my mom, giving her a heads up on what I may experience on the steroids. My mom so kindly sent it to Jared to "warn" him! Haha. I'm glad my family was a little prepared as to what they were going to be experiencing! See below...this sums it up.

 

http://prednisonesupport.tumblr.com/

Here is a chart describing the side effects of steroids. The intensity of side effects will vary from person to person and size of dose. I will explain below a little how each has affected me, or not affected me. 

Emotional Disturbances: Where to start? Feeling on edge 24/7. Anxiety every moment of the day. Excitability. Shaky. Wanting to snap at the littlest things that would bother me. (I am currently on 10mg daily and still have my days when this affects me but definitely not as bad now!)

Enlarged Sella Turcica: A depression in the base of the skull where the pituitary gland is situated.http://www.medterms.com/script/main/art.asp?articlekey=9683

Moon Facies: This is a moon face. Your face going from nice cheek bone definition to a very round "puffy" face! I noticed my face getting "puffy" one day when I was putting on my makeup. My cheeks felt like I had them puffed. When I looked closer in the mirror I realized I looked like it too! I don't really have any good picture of me with my moon face. Now that my face is "normal" again, I wish I would have taken one! Here is the best one I could find. It's hard to tell. You can also see my large abdomen if you look closely. If anything, this picture shows off some pretty special people! :)

Osteoporosis:Osteoporosis, or thinning bones, is a serious condition that can result in tremendous pain with fractures. http://www.webmd.com/osteoporosis/default.htm
This possible side effect is one of the reasons why I get to "indulge" in at least 2-Tums Extra Strength tabs each day. They give me the added calcium I need to keep my bones strong. They also are much needed for the abdominal pain caused by the prednisone! 

Cardiac Hypertrophy (Hypertension, high blood pressure): I remember one night, the week right after my IV treatments and just a couple days before seeing my nephrologist, I was in bed and woke up at about 12am with the WORST headache! I had taken Tylenol just before bed (which I had been doing for the kidney pain). This concerned me that a headache woke me up! As I sat up in bed, my heart felt like it was going to explode, I was sweating and hot and did not feel right. Because my BP had been high at previous appointments and in the hospital, I thought I better check it to make sure I didn't need to go to the ER. (not that I would have anyway, and I didn't when I maybe should have) I stumbled down stairs to get my BP cuff and stethoscope, brought it up to bed and tried my best to put it on myself. (that was funny) I told Jared what I was doing, but, he is a great sleeper and didn't wake up enough to know what was going on! :) My BP was 158/100 I believe. Luckily my doctors appointment was soon so I knew it would get taken care of then!

Buffalo Hump: Oh yes. A buffalo hump is extra fat that develops at the back of the neck and upper back. Mine developed pretty much at the base of my neck. 

Obesity: So...I had just finished loosing 20lbs doing Prism (I talked a bit about Prism here) I was already gaining weight quickly due to water weight from the swelling, add the prednisone and the abdominal weight gain began.

As you see in the picture below, one of these photos is of me carrying my sweet Elin in my belly and the other is a picture of me on 60mg of prednisone and ascites (accumulation of fluid in the peritoneal cavity) due to the kidney damage. Can you tell? ;)

 The photo on the right is me pregnant

Adrenal Tumor or Hyperplasia: The adrenal gland producing too much cortisol. Cortisol is the bodies natural steroid.

Thin, wrinkled skin: I really haven't experienced this. 

Abdominal Striae: Oh stretch marks! My stomach was already "blessed" by you while I was cookin' my sweet baby girl! ;) With the abdominal obesity caused by the prednisone, I now have added stretch marks.  

Amenorrhea: Or, absent menstruation. This is, I believe, the ONLY positive thing about prednisone!! Unfortunately, due to my crazy mood swings, abdominal bloating and acne, you would have thought I was PMSing every day! ;) 

Muscle Weakness: Just to give a little example. Back in June we had our vacation bible school program at church and I held my 18 month old nephew (who weighs a bit more than Elin) during most of the program (only about 20 min). I woke up the next day and my arms were soo sore! They were tender for about 2 days after that! Haha.

Purpura: Bruising. I Bruise pretty easily now. Not as much now compared to when I was on a high dose of prednisone. I have one reoccurring bruise on my right forearm, right below my antecub. It's weird. It just likes to "show up" every now and then. 

Skin Ulcers (poor wound healing): I was lucky enough not to get any ulcers. And when I went on the prednisone I didn't have any sores or cuts that required healing. Since I'm pretty prone to injury, I have had to be VERY careful not to injure myself. I'm pretty amazed at how well I am doing!

A few other side effects this chart does not mention that I also have experienced while on prednisone: acne, insomnia, hyperglycemia (high blood sugar), hot flashes, increased hunger, excess stomach acid secretion (not so much heartburn but severe stomach pain/burning, like my insides were eating themselves), and abnormal heart rhythm (which I currently deal with on a daily basis, it's really annoying!)  

 

http://complicatedfabulous.wordpress.com/

I have tapered down from 60mg to 10mg (my current dose) over the course of a couple months. I must say, this drug is NOT fun, but it DID do the trick as far as healing my kidneys up. I am so grateful it has worked so I would not have to go through; chemotherapy, dialysis and/or a kidney transplant. Thank you Jesus!