Hi, Rheumy!

I went to see my BFF (my rheumatologist) today. I've been weighing myself on our digital scale at home, so I knew I gained 8 pounds since my last visit 2 weeks ago, but it makes it so much more real when you see that the nurse has to keep inching the scale to the right! I'm right around back to my "normal" weight, so I'm going to have to start watching what I eat a little more because I don't want to gain any additional weight. After 2 weeks of not being able to eat, though, eating just feels so gooood! I did ask the doctor if there is a certain diet I should follow or anything I should avoid, and he advised me to just follow a "heart-healthy diet" -- limit fat intake, eat lots of fruits and veggies, etc. So pretty much what any doctor would tell any patient. He said that alcohol was okay, but he'd prefer if I didn't (same thing Dr. C told me) -- "You're doing good now...why rock the boat?" I'm not really a drinker anyway, so that's fine with me. I did have a glass of champagne last night because hubby and I celebrated our first anniversary. Maybe it's because I knew I shouldn't be drinking it that made it taste so good.

Dr. K asked me some questions about how I've been doing and examined my joints. I still have a little bit of swelling in my joints, but most of the pain is gone. He said it looks like I'm responding well to the medication. He went over some of my test results and said that I did test slightly positive for the Rheumatoid Arthritis (RA) antibody, so that is another thing to watch. When I asked what the difference between RA and lupus was, he said that with lupus, in addition to joint pain, it also causes more widespread damage to your internal organs. With RA, it is primarily just your joints. The other difference is that lupus is non-destructive to your joints where as RA is destructive, so patients with RA can end up with permanent deformities. Based on my current symptoms and lab results, he is pretty confident that it is mainly the lupus affecting me right now, but he said that with diseases like this, it could change over the course of time.

This time I came prepared with a list of questions, so he went through them all with me. I've been trying to be more in tune with my body and made a list of symptoms and things I've noticed. He helped me sort through them and figure out what was likely due to lupus, what is a side effect of the medications I've been taking, and what is just "normal". He agreed that it is often difficult to tell exactly what is causing the symptom, but usually the treatment plan would be similar. Depending on what the symptom is, they may be able to run tests to see what the cause is.

My muscles have been a little sore lately (like I just worked out), and he said that is common because the lupus had me wiped out and in bed so long -- my muscles get a work out just from everyday use. He said not to push myself too much right now, but when I feel ready, regular exercise would be beneficial. I fell down and skinned my knee walking to my car one day. The ground was rocky and my left ankle rolled (this actually happens quite often to me -- hubby will ask what I tripped on and then turn around to see nothing there), but this time, I wasn't able to catch myself, and I skinned my knee. I think this is because of the weakness in my thigh muscles. Dr. K did say that general clumsiness is probably not from the lupus. Shucks, guess I can't blame everything on it! Forgetfulness and neurological problems, however, he said could be from lupus.

Yesterday when I was driving to work, I was looking into the sun. When I got to work and turned on my computer, I was still seeing those "sun spots" for another hour or so. I debated about calling the doctor since I knew the hydroxychloroquine I was taking was known to cause eye/retina problems. It eventually got better, and since I already had an appointment to see Dr. K the next day, I decided to just mention it today. He wants me to make an appointment with my ophthalmologist to get my eyes checked. I need to get a baseline exam and then have her monitor me every six months.

On a good note, I asked if I needed to see a kidney specialist like Dr. C recommended, and he said no. He'll be continuing to monitor me with my regular urine tests, and if it gets worse or looks like the lupus is attacking the kidneys, then we would move forward with finding a specialist. Yay! One less doctor (and bill) to add to the list.

I also talked to Dr. K about how he would be monitoring my treatment and when he would change my medications. He said that he needs to see me regularly and that every time I come in, I'd probably have to do a blood and urine test. That and his physical exams would be the best indicators of how I am doing and how I am responding to the medicines. On this visit, he lowered my prednisone from 10 mg daily to 7.5 mg daily. I hope to be off the prednisone soon. If we lower the dose and I experience more pain, we may try to add another medication.

I asked Dr. K what stage or severity he would classify my lupus in. I explained that I had been reading discussion boards and blogs online that scared me because a lot of people seem to have extreme conditions. I figured there was probably a bias towards the more severe cases because those with very mild cases probably don't feel the need to write or talk about it much, but I was still worried that this may be an example of where I was headed and what I could expect later in life. He agreed about the bias and said that there are probably also a lot of people I see walking around every day and would never know they had lupus. As far as the severity of my specific case, it can be very subjective, but he would say I am "moderate" because of the number of symptoms I have and the number of organs that are affected. He said it would be considered "severe" if the lupus started attacking the vital organs like my heart, spinal cord, and brain. Some patients who just get a rash and some joint pain might be considered "mild".

When I asked him about vitamins and supplements, he told me that I should take a multi-vitamin and calcium. This is fine with me (despite my pill-swallowing problem) because I can take the gummy bear vitamins and chocolate calcium chews from Costco. He generally advised to stay away from immune boosting supplements to help with autoimmune disease because my immune system is not hypoactive, it is actually hyperactive, and doesn't need a boost. Basically, he wants me to check with him or at least let him know if I decide to start taking anything.  He did say I should take the flu shot every year (but not the spray -- I should stay away from any live vaccines).

I've also been starting to think about how lupus affects pregnancy, but Dr. K says that could be a half-hour conversation in itself, so we'll save it for when the time comes. He did say that many lupus patients experience bad flares during their pregnancy, so there is a risk to both mom and baby. I need to be off the prednisone first and they'd like me to be symptom-free for at least 6 months before getting pregnant. One of the blood tests he ran was for anticoagulant antibodies. If you test positive for it, you are at a higher risk for miscarriage. Luckily, I tested negative for all three of those antibodies. He said that the important thing is that I am monitored closely throughout the pregnancy. I asked him about OB/GYNs who specialize in high-risk pregnancies, and he said they are called maternal-fetal specialists or perinatologists. He said there are about 6 or 7 on the island and that they could work together with my normal OB/GYN.

I had a lot of questions and spent quite a long time talking to my BFF (aka Rheumy). So much so that the nurse came to knock on the door because I think the next patient was waiting. I didn't want to take too much time because I know what it's like to be a patient waiting forever in a doctor's office, but I had to get my money's worth! I have no idea yet how much all of these doctors visits and lab tests are costing me. I saved a few questions for my next visit...I will, after all, be seeing him quite often. My next visit is in two weeks.

After my visit, I went to the lab to do more blood work and another pee test.

Sorry for the long post. I'm trying to capture everything for myself too so I don't forget what Rheumy said...

- a little lupie -