I usually go to see Rheumy on Saturdays, so hubby comes with me. This time they didn't have any weekend appointments so I went in on a Monday after work. It was my first time going alone. Not that I need someone to go with me, but it's good to have another person there to hear what Rheumy says and ask questions I might not have thought of. Plus, with my lupiness, I might miss something or forget something that doc said.
Rheumy asked me about the symptoms I had brought up at my last visit. I am still feeling tired and fatigued, but my headaches have gone away and my eyes haven't been too dry. He went over my blood work -- my white blood cell count was still about the same, red blood cell count up slightly, and sediment rate still revealed some inflammation. He said that although I feel better, blood tests usually lag a little behind before they show improvement. If the blood work doesn't improve, however, we may look at adding another medication so that I can get off the prednisone.
As I mentioned in my last Rheumy update, Dr. K is thinking of putting me on azathioprine (Imuran). We are still waiting for the blood test results to see if it will cause complications for me, but it needs to be sent to the mainland and can take two weeks. I had read up on the drug a bit before my visit and had some concerns about the side-effects. In addition to the severe stomach pain, it is also cited as increasing the risk of cancer. This scared me a bit and I asked Rheumy about it. He said it is more of a concern for patients taking it for organ transplants (transplant patients take this immune-suppressing drug so that their body does not reject the new organ). He said that because the immune system is suppressed, the body doesn't fight off things that it normally would, like small skin cancers. He said that it doesn't increase the risk of getting large tumors. In fact, he said that lupus has a higher chance of increasing the risk of cancer. We don't know if I'll need to start azathioprine yet, so hopefully I'll be able to get off the prednisone without it. If I did start it, it might be long-term, or we might be able to slowly ween off of it as well.
I also asked Rheumy about the new lupus drug approved by the FDA, Benlysta. He said that he doesn't think anyone in Hawaii has it yet, but wouldn't recommend it for me anyway. He said that it would probably be beneficial for someone like me who has tried all the "tried-and-true" mild lupus medications but hasn't gotten results and who isn't severe enough to use the more serious, riskier drugs. Even then, he -- like many rheumys -- would be hesitant in recommending such a new drug. It is hard to know what the long-term effects of the drug will be since no studies are available yet.
He said that Benlysta is exciting because it is the first drug designed specifically for lupus. Prior drug studies have failed because the nature of lupus makes it difficult to get a good results. Lupus patients can range from having a mild skin rash to life-threatening organ conditions, so it would be difficult for a drug company to promise a given result. Lupies are just too varied and unique. The Benlysta study tried to minimize the variation in lupus patients in order to better predict the results.
Rheumy lowered my prednisone dosage from 4 mg to 3 mg and said I didn't have to come back for a whole month! Woo hoo! I feel like I am making good progress!
- a little lupie -
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