I miss buzzy kristin

otherwise known as "coming down off of prednisone"

I've been gradually reducing my predinsone over the past few weeks. I started on 20 mg a day, and it eventually resulted in causing sleepless nights, shaky hands, and hyperactivity. Wow, and I thought I was talkative before! It got pretty bad, so I called Dr. A and asked to start tapering off. I went down to 15mg, then down to 10 mg the next week. Then down to 5mg, and now I'm alternating 2.5mg one day with 5mg the next.

Although I was reticent to go on steroids to begin with, I have to admit they really helped. My rash on my face/neck/chest etc is almost gone, I'm just left with pink across my nose and cheeks (the classic malar rash). I don't have any pain in my joints and muscles and the fevers are gone, too.

Unfortunately, now that I'm weaning off the drug, my energy level has really dropped. I think I'm feeling mildly depressed as well. Total bummer. When I was on the prednisone I got SOOO much done. I was catching up on stuff that should have been done 6 months ago. Now I'm back to having to really push myself to get stuff done again. We'll have to see how things go, see if there are other ways to get some energy...eating well, lower stress, better sleep and some exercise may be good places to start! I'm off traveling for the next few days, hopefully will be able to relax a bit after that.

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...

new symptom of the day

Lupus is so bizarre, symptoms change on a daily basis.

I was feeling pretty good on Friday night, chatted with my mom and was fairly upbeat about everything. Then, I woke up around 1 am with swelling and pain in between my ear and my jaw. It hurt so bad, I couldn't sleep on that side of my head! Of course it's the weekend when doctors go into hiding, so I didn't know what to do.

I did some googling and self-diagnosed that I probably have Sjögren's Syndrome. It often goes hand in hand with lupus, and it involves swollen salivary glands, which are just next to the ear and jaw.

On top of this, I have a rash running down my neck and chest. I assumed that this was associated with the malar rash on my face, but now I'm worried that it's hives caused by the Plaquenil. Arg. I really don't want to have to stop taking the Plaquenil because the other drugs I would have to try and much more potent and yukky.

I'll call the doctor tomorrow because I'm willing to self-diagnose for the weekend, but I come to my senses when Monday rolls around. Hopefully I'll be able to get some answers over the phone.

welcome to lupus boo

So, a friend of mine said once that blogs were self-indulgent. Well, some are and some aren't. I had a blog to post photos and updates about my baby-to-be -- that was a blog about sharing. I have a blog for my retail shop and that's about marketing.

Well, this blog is about self-indulgence. If you don't like that then luckily for you you don't have to read it :)

I wanted to start my lupus blog. First off, lupus sucks. This isn't really up for debate, I don't think you'll find anyone who disagrees with this statement. There are so many reasons that lupus sucks. Pain throughout your entire body, both muscles and joints. Random low-grade fevers. A big ol' rash all across your face (that hurts AND itches, joy joy). Sensitivity to sunlight - what, now I'm a VAMPIRE??

I was diagnosed a couple weeks ago with lupus. It shocked the hell out of me. I went in to the doctor because I had a little rash on the bridge of my nose. I was afraid it was skin cancer, but my doctor didn't think so. She tested for all sorts of things, and my tests came back "sky high" for lupus.

This is not news I was in the mood to hear. We have a 14 month old baby, have recently moved to a new state and just started a business with my husband. I really felt like we were *just* hanging on and then WHAMO! -- lupus??? what the heck.

So I've gone through the gamut of emotions -- sadness, anger, "why me??" etc. I am working on acceptance, but it's going to be a while.

There is no cure for lupus. Treatment ranges from taking anti-inflammatory drugs (aspirin, advil, etc) to anti-malarial drugs to corticosteroids. I started taking Planquenil 2 weeks ago, and went in for tests this morning. I'll find out the results in a couple weeks when I go to the doc.

And on the topic of the doc. Lupus is generally treated by a rheumatologist. The guy I've seen so far is a Putz (capital "P" intended). I'm only going to him until I find someone new. This doc blew off my questions about any alternative or complimentary therapies and when he heard I was breastfeeding, he said bluntly Oh you'll have to stop...like it was no big deal. And as a matter of fact, I'd have to stop that day because I needed to start taking the Planquenil *that evening*. Yes, I'm going to just *stop* breastfeeding my baby today, it's that simple. Umm, no. I went home and looked up the drug, and it's classified as safe for breastfeeding. So doc=lame-o and I won't see him any longer than I have to.

I guess this is a long enough post for today. This blog will basically be my ranting and raving and sharing how I am dealing with this interesting/frustrating/sucky turn in my life. It's mainly for me to get my thoughts out of my head, but maybe some other folks will benefit if they are going through similar stuff.