Another Rhumey Visit

I went for my regular 2-week check-up with Rhumey this morning, and looks like things are going pretty well. I haven't experienced any new symptoms since my last visit and the swelling in my joints has gone away. The only symptoms I've had in the past two weeks is fatigue and some stomach pain (which may have been because of something I ate). Since I went down to 7.5 mg of prednisone, I haven't experienced heart palpitations.

Other than just my symptoms getting better, my blood and urine tests show improvement. I am still anemic (low red blood cell count), but Rhumey says that is common with auto-immune disease because all the inflammation causes red blood cell production to slow down. My amylase and lipase levels show that my pancreas is still a little inflamed, so we'll continue to watch that. My white blood cell count is back into the normal range, and my kidney function is improving. This is a good sign because it indicates that my low kidney function was probably due to dehydration and not to lupus nephritis. Lupus nephritis doesn't get better on its own, and would require stronger medication than what I am currently on. He also mentioned that the cells would look different (or something like that), and mine appear normal.

My list of questions for him wasn't as long this time, but I did ask if he would monitor my thyroid level since I was regularly getting blood tests through him every couple weeks. I usually see Dr. C to monitor my thyroid, but that would mean an additional doctor appointment and an additional blood test. Dr. K said we could do that, so that'll save me time and money.

My next question was if I needed a DXA Scan to check my bone density levels. Bone density is a concern because the prednisone I am on is known to cause osteoporosis. Dr. K said it wasn't necessary because (1) my insurance wouldn't cover it (unless I was on more than 7.5 mg of prednisone for over two months), and (2) even if it did show low bone density, we probably wouldn't treat it right now anyway. Dr. K explained that most osteoporosis medications are for post-menopausal women. Many of the medications can stay in the body long after you stop taking it, and it can have negative effects on pregnancy and baby's development, so they normally don't prescribe it if you are pre-menopausal. That's why it is so important for me to take calcium supplements (which he told me at my first appointment, but I hadn't been able to get to Costco to buy my calcium chews).

I also asked how I would know if/when the hydroxycholroquine (plaquenil) was working, since he said it can take a couple months before it starts working. He said I probably wouldn't be able to tell, especially while taking the prednisone. Once I get off the prednisone, if it seems like my symptoms are being managed, the plaquinil is probably working. If my symptoms come back or get worse, we'll have to try a different medication. I've read that with lupus, medication is a lot of trial and error...they're not even sure how or why plaquenil (an anti-malarial drug) helps lupus and RA patients, just that it does.

We did lower my dose of prednisone to 5 mg. Yay, that means one less pill to swallow! He did warn me that although we are dropping it by the same quantitative amount (2.5 mg), it was decreasing the dosage by a greater percentage (33% vs. 25% the last time), so I might see some symptoms coming back. Because my body was getting what it needed from the synthetic corticosteroid, my adrenal glands are probably suppressed because they weren't needed. Now that I am below 7.5 mg, my body will need to produce some on its own. It may take 3-5 days for my body to tell my pituitary gland to tell my adrenal glands to start producing more hormones. While that happens, I may experience withdrawal symptoms such as fatigue, nausea, vomiting, dizzyness, and body aches. Sounds suspiciously like my lupus symptoms...Dr. K said it can be hard to distinguish the two, but the withdrawal symptoms should go away in 3-5 days. If I am feeling symptoms after a week, it is probably the lupus, and I need to call him.

I didn't have to do lab work today (yay!), but he said we'll do tests when I come back in two weeks. If the lab tests come back good and I'm still feeling okay, we can start spacing out my appointments a little more (double yay!). Hope my next visit to Rhumey shows even more improvement!

- a little lupie -