My New BFF

I went to see the rheumatologist (Dr. K) a few days after my initial diagnosis (I was really lucky to get in as soon as I did...I hear it is often a month + wait to get in to see a specialist because of the shortage of doctors in Hawaii).  He reviewed my medical records and lab results that Dr. C had sent over and confirmed her lupus diagnosis.  He asked me some questions about my symptoms and medical history, gave me a quick physical where he examined my joints, and talked to me about treatment.  He also sent me to get more lab tests done to help determine the extent and severity of my lupus.

Dr. K put me on 400 mg of hydroxychloroquine (plaquenil), an anti-malarial medicine that has been shown to be effective in slowing down the tissue damage caused by rheumatic diseases such as lupus or rheumatoid arthritis (though they're not sure exactly how it works).  He told me that the medicine is relatively low risk and would decrease my chances of dying from lupus by 50%.  The biggest side effect is that can cause eye problems, so it will be important for me to see an opthalmologist every 6 months.  Other common side effects include nausea, stomach cramps, and skin rashes.  Dr. K said most patients with lupus take this medicine and that unless I have a bad reaction to it, I will probably be on it for the rest of my life.

Unfortunately, the hydroxychloroquine takes 6-8 weeks to kick-in, so he also prescribed prednisone to calm my symptoms and help me feel better sooner.  Prednisone is a steroid with a lot of undesirable side effects, which include weight gain, "moon face," insomnia, mood swings, bruising, and indigestion.  If you are on it long-term, you also run the risk of developing osteoporosis or glaucoma/cataracts.  It is important not to stop prednisone too quickly or you will experience withdrawal symptoms such as nausea, vomiting, pain, fever, and/or a flare up of the disease.  Dr. K started me on 10 mg, daily but will monitor me to see if we can slowly bring that down.  Because of the adverse side effects, I hope I don't have to stay on it for very long.

Dr. K talked to me a little more and said that I would need to see him every couple of weeks for monitoring so that he could adjust my treatment plan and medications.  Eventually we'll be able to space out the appointments more and hopefully I'll only need to see him every couple months.  He did tell me that I needed to come see him as soon as I don't feel well, though.  With all the time I'll spend in his office, Dr. K may be my new BFF.  Sadly, I'll probably see him more than I see my real friends.

He asked if I had any questions, but I didn't really.  I think I am still a little numb and in my state of shock from the sudden diagnosis.  I had read about the disease on the Internet, but because it seems as though there are so many unknowns with the disease, it is hard to ask questions and get clear answers.  He did suggest that I look into joining a support group to talk to others who are going through the same thing.  I think I'll continue researching and come back prepared with a list of questions for my next visit.

- a little lupie -