the docs and the drugs

I've been taking the prednisone now for almost 4 weeks now. It is really powerful stuff. I was on 20 mg to start and took that for about 2 weeks. I knocked the lupus right on its butt! Rash went away, aches and pains in muscles and joints are gone, no fevers, feeling pretty good actually. The side effects? I finally asked to lower the dose when my hands were shaking and I was getting less and less sleep (the final straw was the night I got one hour of sleep, but it was my bad for eating chocolate before bedtime, duh!).

So I have been gradually lowering the dose, and still feel well, but am not "buzzy kristin" as I had dubbed myself. I did feel really hyper, which was somewhat disconcerting, but I felt good, and wow, did I get a lot of stuff done! I was catching up on stuff that had needed to be done for the past 6 months, yay!

I'm a little worried about coming off the Prednisone. I was in a pretty bad flare before I went on it, so who knows how I'll feel when I come off the drugs...

Enough about drugs, on to the doc!

I went into New York City yesterday with hubby and baby to see Dr. Jill Buyon. Dr Buyon is the Vice Chair of the Dept. of Rheumatology at the NYU Hospital for Joint Diseases - otherwise known as "a bigwig in the lupus world". I was very pleased with our visit.

We had a 2 hour consultation with Dr. Buyon, and she encouraged my husband and baby to stay the whole time, which I appreciated. She did a full history, a physical exam, looked at my tests and talked with me -- a *very important* step that a lot of doctors seem to forget about these days...

She was mostly in agreement with my current course of treatment, with a few minor tweaks here and there, but nothing major. That was a relief as I plan to continue seeing my local doctor - Dr. A - since Dr. Buyon (Dr. B!) is a little far to travel on a regular basis.

My blood tests show that I have very high anti-DNA levels and my compliments are very low. I think this causes concern that the organs could be affected, though right now they appear fine. Dr. B asked me to do a urine test every other week to check for blood and protein. That sounded like a good idea to me since the possibility of organ involvement is one of my main concerns...

One of the best things I got from my visit yesterday was the green light to continue breastfeeding my little one. I had been going back and forth on this one -- the other two doctors I've seen both recommended that I stop breastfeeding. Dr. Jerk made it seem like I should just stop that day (like I can just stop cold turkey, baby would freak out!). Dr. A was more understanding, but still felt it would be better for me if I quit. I did a lot of research on the safely of the drugs for the baby, and am confident that they are OK for him, so we were really more worried that it was too much for me. But I was not ready to stop nursing and neither is baby, so it was really stressing me out to try and wean him. And stress is definitely not good for me! So, the bottom line was that I was thrilled when Dr. B told me unequivocally that I could continue nursing, yay!

So, all in all, I'm feeling OK these days. I am a little worried about what will happen when I go off the prednisone completely, but we'll cross that bridge when we come to it.

I also just got an email from someone who has lupus and has tried lots of alternative therapies over the past 15 years. She lives locally and we're going to get together and chat, I'm really looking forward to meeting her, she seems like a neat person :)

just an update

So, I've been on the plaquenil for a month now. I'm also now on Prednisone. It's hard to say what the Plaquenil is doing, but the Prednisone is some powerful stuff.

I've been living a fairly medication-free life for the past few years, so it's hard for me to deal with taking these serious drugs. The Prednisone makes me all buzzy. I'm short with my husband, and it's so hard with my 14 month old son. I keep a "slow...slow" mantra going through my head to try and calm stuff down.

On the plus side, I'm actually pretty much pain free and getting a lot of stuff done. Having this much energy makes me wonder when my energy went away. Was it during the pregnancy? Before then? 10 years ago?? I really don't know, I feel like I haven't been my peppy self in a really long time.

Regarding my previous post when we were playing "fun with self-diagnosis"...my doctor says that the symptoms I have all fall under the lupus umbrella, so no more self-diagnosing for me!

And concerning my doctors...yes, plural. I was seeing a rheumatologist in Red Bank (from this point on, this doc will be known as "dr. jerk"). I saw him just after I got my initial diagnosis from my GP. He was so cold, unfeeling, and blunt. I saw him twice and each time went home and cried.

The good news is that he is fired! I found a new doctor - Dr. A - about 20 minutes away, and she is so much more positive and hopeful. She tells me that the worst is behind me. We have a diagnosis and now we move forward and manage it. I was so relieved to find someone who did a good thorough exam and provided me with a hopeful caring diagnosis.

I am most likely going to head in to New York City for a full work-up at the NY Hospital for Joint Diseases. My mom has contacted a doctor there and we're working on setting up an appointment just to cover all my basis.

My dear baby is screaming his head off, so I guess that means it's time for bed. Off to comfort...