is the medicine worse than the disease?

So, I have a horrible infection in my leg. Hurts like the dickens and is not very attractive. I went to Urgent Care on Sunday, and then to my already scheduled rheumy appointment today. I have been placed on an antibiotic so let's hope that cures it up. However.....

My rheumy told me to stop taking my Imuran (which is the drug I take to manage my lupus symptoms) for a week, and once that week was over to reduce the amount I am taking to 100mg instead of 150mg. Now, let me tell you a few things about Imuran:

1. It is an immunosuppressant....as though I am already no immuno-compromised enough with my low white blood cell count and positive ANA.
2. It's an anti-rejection drug...which I guess is good since my body is fighting itself.
3. "Patients receiving immunosuppressants, including Imuran, are at increased risk of developing lymphoma and other malignancies, particularly of the skin. Physicians should inform patients of the risk of malignancy with Imuran. As usual for patients with increased risk for skin cancer, exposure to sunlight and ultraviolet light should be limited by wearing protective clothing and using a sunscreen with a high protection factor." ummmm...need I say more than the FDA?
4. "Severe leukopenia, thrombocytopenia, anemias including macrocytic anemia, and/or pancytopenia may occur in patients being treated with Imuran." FDA     Hello??? I already have two of these!!

So, I guess my question is.....is the medicine worse than the disease? Did taking Imuran cause, in some part, my leg to look like I have leprosy and feel even worse? I'm not sure, but I'm going to keep asking!
 
 
 

a talk with the doc

I saw my family doctor today, you know, good ole Doc Godfrey (he's not really old, actually quite young....scary~) Anyway, he and I had a little chat about lupus. Nothing too important especially since he doesn't know that much about it (except that he did say not to take ibuprofen since it can cause stomach bleeding and reduce platelets ...and I don't have any of those to spare!), but I told him that I had been reading some blogs written by people with lupus. Most of those people...SCARE ME! Seriously, they are not happy, AT ALL.  I certainly don't want to feel like that. 

But, we did talk about the fact that lupus is many different things and looks differently on everyone. It's like a BIG mystery since some people have major problems, and some just a rash. I have experienced what some of them spoke of because I am asked all the time if I am feeling better. I don't know.....I never really felt BAD per se....just VERY, VERY TIRED much of the time. I mean a bone-weary tired. So, it's kinda hard for me to answer that question. I may feel up to going  all day one day, and the next be exhausted and in pain. So, while I don't look sick, I am. While I try not to act sick, I am. I am seriously trying to stop thinking about it...I just want to LIVE WELL and enjoy my life. I have no intention of letting this beat me. Hence, the following song.....I will not be lupus! I may put up with, but God will continue to design my life and define who I am.

I will change your name.
You shall no longer be called

Wounded, outcast, lonely or afraid.

I will change your name.

Your new name will be

Confidence, joyfulness, overcoming one,

Faithfulness, friend of God, one who seeks my face.

 

Not sure who to credit for the song, so if you know...let me know!

Lupus awareness

In order to raise awareness for lupus, a disease that is rarely understood and often misdiagnosed, I have decided to participate in the Walk for lupus now event on April 30. Since I decided so late to participate (I only found it tonight!), my goal is just $100. Let's meet and exceed that, you guys! I need a cure, and so do the many many others who suffer with this disease. Just click the thermometer and it will take you to my page to donate.

Thanks!!

a diagnosis

FINALLY. It seems it was really only a matter of finding the right combination of doctors who knew what they were talking about.

So, I went back to the rheumotalogist in Charleston today. He had run some blood work when I was there 4 weeks ago and given me a prescription for prednisone. The steroid was GREAT, but he told me at that time that if being on them caused my blood levels to come up then he would definitely think I had lupus. Last Friday, I had to have a CBC done, and all of my counts were down. So, naturally, I assumed that I didn't have lupus.

However, when we got to the appointment today, he pulled out the labs from a month ago and began telling us that this was elevated and that was centric and something else was a low complement.......(can you tell he was speaking medicalese?)  all that to say that he was 99% sure that I DO have lupus.

What is lupus? It presents itself in people in several different ways.....a skin rash, joint pain, and kidney disease are the most common. It does present in the blood in some people....like me! Basically, my immune system is in hyper overdrive and is killing the bad stuff (germs) and the good stuff (platelets, red blood cells, and white blood cells). Our goal now is to try to calm it down.

How are we doing that? Well, first off I am starting a new medicine. It may take a while to get the dosage correct...yippee.....and it may cause me to become sick. Secondly, I have to completely change my diet because I can't have anything with preservatives. In his words, all fruits and veggies should be as close to raw as possible and meat should not contain all that stuff they pump into it. Why, you ask? Well, preservatives act as an antibody in the body and they will not allow my immune system to calm down because it will be working to remove those foreign substances from it. This is gonna be a hard one for me, because as you all know.....my favorite food group is cake! However, I'm going to have to be vigilant (do you know how much we eat contains preservatives?) like EVERYTHING! I also have to walk 10-15 minutes 4-5 times a week for now. That shouldn't be too bad.

I'm still trying to wrap my head around this thing so I am sure that I will have much more to say as I get started. So, for now, I am off to eat my dried vegetables (bleh) for dinner.