Tasha's Story

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I guess I'll use this blog feature to tell a little bit about my story and how I was eventually diagnosed.

Back in the beginning of September 2008, I started noticing some pains in my fingers. The pain would only be in one place at a time, and then it would move to another finger a few days later. Eventually this trend spread to my wrists, arms, knees, and ankles. It just kept moving around but it was never really in more than one place at a time. I thought I was crazy and had some sort of psychological pain disorder or a neurological problem.

Eventually the pains got so bad that I could barely even walk, and the pains were always so much worse at night, but tended to ease up in the mornings and throughout the day. I decided to go see my general practitioner. She immediately thought it was an autoimmune disorder based on my symptoms. She threw the term "Rheumatoid Arthritis" at me, which really freaked me out. She ran blood tests, said I tested positive for an autoimmune disorder, and told me to see an internal medicine specialist.

I made an appointment with an internist and he ran more blood tests. After those tests he told me I had Mixed Connective Tissue Disease, and gave me a prescription for 10mg of prednisone and sent me home. The prednisone got rid of all my pains almost immediately and I was so grateful. However, to be safe, I decided to schedule an appointment with a rheumatologist at the end of December.

My rheumatologist ran more blood tests and urine tests, and she immediately thought it was lupus. My internist had never even taken any urine tests otherwise he probably would have thought the same thing! My kidneys were clearly spilling tons of protein, and there was even some blood found in my urine. My rheumatologist immediately prescribed me plaquenil, and raised my dosage of prednisone to 40mg. She also told me to schedule a renal biopsy at the hospital so that we can better know the exact state of my kidneys.

My renal biopsy was at the beginning of February of this year. The results confirmed that I had nephritis, and that it was stage III. I have no problem in kidney functioning, which is good, but I needed treatment. My rheumatologist prescribed me cellcept for that. During this time I was also seeing a nephrologist who was basically confirming everything my rheumatologist was saying. He was also able to better explain to me the state of my kidneys.

Right now I'm basically just waiting for the plaquenil and the cellcept to start kicking in so that I can lower the prednisone, which I hate. It's making me gain weight and makes it difficult for me to sleep. I also have noticed a bit of muscle weakness from it. My rheumatologist also told me to take 1200mg of calcium and 800mg of vitamin D every day, which I take with my other medications. I'm also on lisinopril to keep the blood pressure low and lipitor to keep the cholesterol low.

Other than all of that I feel pretty good though! No pains anymore, and I never noticed any physical side effects from the kidney thing either... Without those urine tests I never would have known a thing!

What's my next step? I scheduled an appointment with a rheumatologist at UCLA at the end of next month. I just want to make sure I'm getting the absolute best treatments I can, and to see if he can offer any other suggestions. Since it's UCLA, I am also going to inquire about any studies that I might be able to participate in.
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  1. purplepinkgirl's Avatar
    Your story is somewhat familiar to mines, but it sounds like you have a good rheumy and primary doctor. Just try to watch what you eat since you always feel hungry. I gained 32 lbs in one month when i first started 60mg of prednison. so i am now trying to work off this extra 40lbs before the summer gets here. I hope you do well with yours keep me posted and good luck!
  2. tasha's Avatar
    i noticed that the prednisone made me feel hungrier when i was on 40mg but now that i'm on 30mg i've gotten more back to normal thankfully. but prednisone makes you gain a ton of water weight regardless of whether you change your eating habits or not. it just kinda sucks no matter what
  3. mortifiedat52's Avatar
    so, have the drugs kicked in yet?

    i was just diagnosed with lupus based on blood tests this month.. at my last appointment with the rheumatologist, she took a urine sample.. i don't know the results of that test yet, but i had assumed that since i wasn't having any trouble in that department that i was ok... but you weren't have any trouble either, right?? no pain or problems urinating?

    i'm taking prednisone and cellcept and wondering when i can expect some relief in my hands and feet.
  4. tasha's Avatar
    the drugs HAVE finally kicked in! i just found out today that the protein levels in my urine have decreased by half! i've been on cellcept for almost 2 months now, and it's finally working. you just have to be patient. from what i can hear, it can take even much longer than this to kick in for some people.