In the midst of rheumatoid arthritis and lupus awareness month (and World Lupus Day was May 10), I had my sixth-month follow-up with my rheumatologist.
In order to talk about my latest rheumatologist appointment, I need to provide a bit of context. I've been seeing my rheum for about three years now. He's the one and only rheum that I've had. In the beginning, there were definitely some personality clashes. I think he thought that I was some dumb kid who couldn't advocate for herself. Newsflash: I was scared out of my mind. I was so sick, and at the time, all anyone could tell me was that it was either nothing or I was dying.
Everything my rheum thought I had, my primary care doctor (who was a quack) told me I didn't have. My rheum was convinced that my best option for health would have been to quit graduate school. My parents don't have health insurance, and being without insurance didn't seem too helpful. Also, I didn't want to quit school. It was my life. And here, my life was being turned upside down and inside out, and I wanted to at least keep one thing normal.
I considered getting a new rheum, but ultimately, as time went on, our relationship did improve, to the point where if he sees me on the street, he will stop and chat with me.
So fast forward to this week.
I go in with a list. I always have one, and my rheum has come to expect it. It's part of my charm as a patient. So the list for this week's appointment looked like this:
- Itching attacks
- Methotrexate vs. Cellcept
- Mouth sores
- Sun reaction
- Time between appointments
I will address each of these in turn.
I seem to get a lot of migraine-type headaches. As of late, this has been my most consistent symptom.
I have had problems with severe itching. My rheum attributed this to a very rare side effect from Plaquenil/ Hydroxychloroquine. My dose was lowered from 200 mg to 100 mg, and this seemed to work for a time, but I am experiencing the itching again.
I've also been experiencing mouth sores and a severe sun reaction, which suggest that my lupus is in active disease mode right now.
I also expressed concern about the fact that having appointments every six months seems to be a bit infrequent. My life doesn't exist in a vacuum, and there is just too much that happens in half a year.
Finally, I spoke to my rheum about the possibility of being on both Methotrexate and Cellcept. Cellcept is an anti-rejection drug for organ transplant patients, but is also used to treat lupus. I was on it previously, but was taken off of it because its effect seemed to have plateaued. For me, my illnesses are seasonal, so I was curious about potentially being on Methotrexate in the winter and Cellcept in the summer.
My rheum wasn't too enthused by this suggestion. But he did take me off of Plaquenil, in favor of putting me on Quinacrine. Quinacrine is in the same class of drugs as Plaquenil, but is known to be more affective in treating lupus.
Quinacrine is not commercially available in the United States, and you can only find it at certain specialty pharmacies.
My rheum expressed some other concerns, so I ended up getting 10 tubes of blood drawn and three urine samples. We need to see where things are at right now, as I have a really busy summer travel schedule, which I know is going to be difficult with my illnesses.
I know that the awareness commemorations are to raise awareness outside of the chronic illness community, but it all feels a bit overwhelming when these illnesses are in the front of my mind.
I don't think awareness should be relegated to a day or a month. Awareness, for those of us who are ill, is, and should be, an everyday occurrence. By blogging, sharing our stories in other ways, and simply existing in the world, we raise awareness.
Please visit our Arthritis Awareness area - we're adding new content several times each week. Don't forget to enter MyRACentral's weekly contests throughout the month of May! Follow MyRACentral on Facebook or Twitter to get regular updates of new content and contests!
Published On: May 19, 2011