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!

If It's IV, Why Does It Seem Like PO? Part 9

Infusion Thursday came. The beginning of my steroid treatments. This would be a 3 day adventure for me. My mom insisted on taking me to my first treatment. I was feeling pretty exhausted and was unsure of how I would feel after my treatment, so I obliged. ;) 

I headed up to the outpatient special procedure room a little before noon. I walked in to to the treatment room where I was met by one of my nursing friends who runs the small unit. She was running around, very busy, dealing with other patients there for infusions, injections, etc. Most everyone receiving treatments were well over 60 years old. Needless to say, I felt a little out of place. The nurse registered me into the computer system quickly and called down to the pharmacy so the IV medication could be delivered. She told me to sit wherever I wanted to. There were about 10 large, comfy, reclining chairs all around the room with an IV pole at each chair.  

I waited and chatted with my mom, waiting to begin the treatments. The nurse comes over and takes my VS. She took my blood pressure and was surprised at how high it was. (I'm pretty sure it was something like 145/90) It had been running that high when I was admitted to the hospital that past weekend. All my other vitals were fine. Just that darn high BP and high heart rate (which I have always had). 

The nurse sends some of the patients who are done with treatments on their way. It's just me sitting next to a sweet, little elderly lady who is receiving a blood transfusion. The nurse then puts in my IV and begins the treatments. 

Knowing that I am a nurse, she gets me the IV solution and treatment medication book out so I can look at symptoms, side effects, etc. of the drug. Each treatment will be a whopping 750mg! The nurses, including myself, were a bit surprised at such a large dose, saying that we had never given a dose that large before. All I could do was laugh at the "firsts" I was experiencing and pray this treatment would reverse the damage to my kidneys. 

If your like me and want a more detailed explanation, this is why steroids are used for treatment of my lupus nephritis class IV:

Classes III and IV

Patients with either focal (class III) or diffuse (class IV) lupus nephritis are at high risk of progressing to ESRD (End Stage Renal Disease) and thus require aggressive therapy.

Administer prednisone 1 mg/kg/day for at least 4 weeks, depending on clinical response. Then, taper it gradually to a daily maintenance dose of 5-10 mg/day for approximately 2 years. In acutely ill patients, intravenous (IV) methylprednisolone at a dosage of up to 1000 mg/day for 3 days may be used to initiate corticosteroid therapy. 

In patients who do not respond to corticosteroids alone, who have unacceptable toxicity to corticosteroids, who have worsening renal function, who have severe proliferative lesions, or who have evidence of sclerosis on renal biopsy specimens, use immunosuppressive drugs in addition to corticosteroids. 

Mechanism of Action

Glucocorticoid; controls or prevents inflammation by controling the rate of protein synthesis, suppressing migration of PMNs & fibroblasts, reversing capillary permeability, & stabilizing lysosome at cellular level

http://emedicine.medscape.com/article/330369-treatment#aw2aab6b6b2

She started my treatment and explained that I would probably have a terrible taste in my mouth after the treatment. Boy was she right! The horrible taste started within 15 minutes of the treatment! I tried chewing gum to take the taste away but that hardly helped. It's so hard to describe the taste: metallic, bitter, nauseating, unnatural...disgusting! Lol. This taste lasted pretty much till evening every treatment day. I did learn, after day one, to order a meal tray before, and eat lunch during the treatment. This helped a little bit. The infusion lasted about an hour each day. I was usually there for at least 2 hours due to; IV placement, waiting on pharmacy to deliver meds, the nurse who was very busy each day, and of course, computer problems! :)

I asked if I could keep the IV in place since I was coming back for another treatment the next day. I thought, no sense in poking me twice if I don't have to be! The nurse wrapped it up good and gave me a couple flushes so I could be sure it was going to stay intact. With Elin pulling on it saying 'boo boo' all the time, showering and dressing, I was surprisingly able to keep it in until the next day!

By the 3rd day of treatment I knew my IV wasn't going to make it. It was starting to become red, painful and just plain annoying. So, I pulled it out Friday night! I figured I'd just get stuck again. No big deal.

My mom was awesome! She took me to get groceries after my treatment because we didnt have much of anything to eat in the house. I had been so busy with doctor and hospital visits and not feeling up to it. Even though I was feeling pretty bad, I wanted to prove to myself, and others, that I was still able to function. HA! (I still say that and act like it on a daily basis) ;) As I was walking down the aisles at the grocery store by myself, (mom was getting her own groceries) I remember feeling like I was having an out of body experience. I was dizzy, in a total fog, ready to pass out from exhaustion. I ran into one of my moms friends (surprisingly, not literally) and talked for a minute about how I was doing. Once again lying about how "good" I was feeling! Then later, my mom tells me how her friend told her how out of it I was. My mom agreed. I was not really "there". Walking around the grocery store was the most activity that I had done in weeks and boy did I push my limits with that one! 
 
I guess I expected that I would be completely healed up and feeling amazing by the end of the 3 IV treatments. HA. That's funny. Aside from having a lot of energy at 4:00 in the morning (thank you steroids) I was still just as exhausted, in pain, and now much more moody and on edge (thank you again...steroids). 

Sunday I began my PO prednisone of 60mg. Yes, this is a very high dose of steroids. I was just wondering when the side-effects would start kicking in. Oh, and did they ever! Little did I know that next Wednesday at my nephrologist appointment, I would be substantially adding to my pill collection. Oh boy!
 

Am I In School Again? Kidneys 101. Part 7

Yes, more waiting for us as we wait to here from the other nephrologist about my biopsy report. My doc just rips out a piece of my kidney and leaves for vacation! Haha.

I felt a little in limbo about hearing from him. Since my doc said no news is good news, did I really want to hear something before my appointment that following week? At the same time, I wanted to know what was going on with my kidneys that was making me feel so terrible!

After coming home from the hospital, I had a couple days off before I had to return to work. I was to work Monday, Tuesday afternoons, and Wednesday midnights. I remember my guy asking me, "what are you thinking? You feel terrible. Call off!" I knew I was feeling terrible but didn't want to give up just yet. My stubbornness was getting ahead of me. I went to work that Monday and worked with one of my awesome fellow nurses, Sammie. From the beginning of the shift I knew I was in for a long night! I was so tired but knew I had a job to do and was determined to do it! I wanted to care for my patients just as I always had. Unfortunately, my body was getting in the way. Luckily, we had been having a pretty low census and there were only a handful of patients that evening which made the workload light.

I remember coming back from my supper break and was beginning to feel aweful. Sammie expressed that I was looking not myself and pretty bad. I agreed! Once again, I love my blunt co-workers. Nothing like co-workers who are real with you and vice-versa! We had done most of our evening duty's, such as; VS, getting all the patients into bed, med passes, snacks for patients, etc. Honestly, Sammie did most of it! She insisted I just sit at the nurses station, but I wasn't listening! ;)

I was helping get a patient ready for bed. My patient was in the bathroom and I was getting her bed ready for her. I felt like I could collapse. I was so dizzy, the room spinning, my back pulsating with pain, I was having cold chills but sweating profusely at the same time. I was stubborn. I didn't want to let this get me down. Sammie, who had just got done assisting another patient, came into the room where I was. She took one look at me and pretty much demanded that I go sit down the rest of the night! I listened this time, considering it really would not be a good thing if I had passed out in front of my patient! I knew if I didn't sit down that is exactly what was going to happen. My colleagues would be calling a Rapid Response on me!! (a RR is not quite a code blue. Called when a patient (usually), visitor or colleague takes a turn for the worse, falls, passes out, etc.)

After all of the patients had been medicated and were in bed, Sammie and I finished up our charting at the nurses station. We talked a bit about my biopsy. I had her take a look at my biopsy site to see how it was (us nurses like stuff like that). As she was looking at my back I explained how my lower back felt swollen. She agreed and said it was pretty swollen. I was really filling up with fluid by this time. The back dimples I had always had were filled in! Lol. Since the water had no where further down to go, it was beginning to creep up!

While at work I ended up talking to the nursing supervisor (I'm pretty sure Sammie made me call her too! What would I have done without her!?) She explained to me how she would possibly need to EO (Excused Off) an RN the next couple of nights. Knowing my situation, she said she would put my name down on those nights to be one of the first called. I was so grateful for her and knew it was God working. Finally the end of sift came. I never thought that night was going to end! I remember walking through the door at home that night, barely able to say 'hi' to my guy. I literally crawled, hands and knees, up the stairs to my room. Barely able to take off my scrubs and crawl into bed. My wonderful husband just loved on me the best he could, praying for me and just letting my cry myself to sleep. 

I got called off work the next two days! Thank you Jesus! I think my family was even more glad I was called off than I was. They knew it was wearing on me and that I was too stubborn to call off.

Those nights that I was called off work were the beginnings of some of the worse days I have ever seen. All I could do most of the evening was lie on the couch and watch my girl and guy play. Mommy was pretty much useless. I was having those terrible cold chills and night sweats in the evening and well into the night. Nausea and pain were taking over my body. 'Though there is pain in the night, JOY comes in the morning!' Psalm 30:5. That verse was such a help to me during those nights! I remember crying that verse out to God MANY nights. The afternoons and evenings were my worst moments of the day. In the morning, I felt my best and knew if I could just make it through the night, the morning would come and bring me a little energy and less pain.

Tuesday, my guy called my doc's assistant Tammy, to ask her if she had heard anything from the pathologist yet. She said no, but would check and give us a call if she had, regardless of the results. 

Wednesday came as I anxiously waited a call. Then that afternoon my phone rang. It was Tammy calling. Tammy explained that the pathologist report had come back and that the doctor filling in for my doc was going to be calling me shortly. About 10 minuets later the nephrologist calls. He had quite an accent so it was a bit difficult for me to understand him. I sat at the table with paper and pen in hand. I didn't want to miss anything he was telling me.

He stated that my kidneys were showing on the pathology report extreme damage and he wanted me admitted to another hospital first thing in the morning (one where they could monitor me a bit closely). At first I thought, oh man, this must be bad if I have to go there first thing tomorrow and be admitted for 3 days! He then explained to me the reason for the hospital admittance was to complete 3 rounds of intense I.V. therapy. He said he would like to do chemotherapy treatments to reverse the damage. Then he asked if I wanted to have more children. "Yes, I would!" I exclaimed. He then changes his mind and says, "well since you do want to have more children, we will go with high doses of steroids instead." (chemotherapy can cause infertility issues) I asked him if there would be any other treatments or monitoring other than the IV steroids and lab draws. I didn't understand why this couldn't be done at MY hospital. He confirmed that it would just be IV treatments and I could have it done at my hospital if I preferred. I then told him we had outpatient special procedure treatments where you can go in on a scheduled time, have your treatment, and go home. He said it would be fine to do that too! (it really paid off being a nurse and knowing these options existed!) I REALLY did not want to be that far from my girl for 3 days if I didn't have to! He agreed that it would be fine and set it up where I would go in for my steroid IV treatments, Thursday, Friday, and Saturday. I would then follow up with my regular nephrologist that following week for my scheduled appointment. 

He then explains to me a little more about my diagnosis. He says I have been given the diagnosis of lupus nephritis. Honestly, I can say I was a bit relieved by the news that it was lupus and nothing worse. (even though right now I can honestly say LUPUS SUCKS! ;) He explained that because of my high ANA lab level and my joint pain back in December it all came together and was lupus. He said he was unsure what exactly caused my lupus to all of the sudden "come out" of hiding. At that point, I was unsure as well. 

Just to give you a little idea of what the kidneys do and how mine were damaged, here is a description of normal kidney function followed by my pathology report for those medical people out there who are interested! :) 

The kidneys' function are to filter the blood. All the blood in our bodies passes through the kidneys several times a day. The kidneys remove wastes, control the body's fluid balance, and regulate the balance of electrolytes. As the kidneys filter blood, they create urine, which collects in the kidneys' pelvis -- funnel-shaped structures that drain down tubes called ureters to the bladder.  

Glomerulonephritis: An overactive immune system may attack the kidney, causing inflammation and some damage. Blood in the urine and kidney failure are common symptoms of glomerulonephritis.

Source

Stage IV Lupus Nephritis (Diffuse Proliferative) is both the most severe, and the most common subtype. In it, >50% of glomeruli are involved which can be segmental or global, and active or chronic, with endocapillary or extracapillary proliferative lesions. In Electron Microscopy, subendothelial deposits are noted, and some mesangial changes may be present. Immunofluorescence reveals the so called "Full House" stain, staining positively for IgG, IgA, IgM, C3, and C1q." Clinically, Hematuria and Proteinuria is present, frequently with Nephrotic Syndrome, Hypertension, Hypocomplementemia, elevated anti-dsDNA titers and elevate Serum Creatinine.Source

So that gives you a bit of an idea what the kidneys do and what mine were not doing! Filtering. In a nut shell, as you see in my diagnosis at the top of the pathology report; Active (happening now), diffuse (affecting a large area), global (entire kidney involved),  proliferative (multiplying) glomerulonephritis. Whew!