I went back to the Rheumatologists office last week and met with Dr. Labarca, because my regular doctor is now out on maternity leave. She started asking me questions that I have answered thousands of times before. I asked her what was going on.
"are you married to this diagnosis?"
Not really. I knew I didn't fit some of the parameters of Still's Disease, especially since I lack an elevated ferratin level, which appears in 99% of patients with Stills. My fevers are also not as high as they 'should' be. She shared some of these concerns with me. Things just weren't adding up.
"I'm just not convinced it's Stills. And I'm not just going to settle, we need a definite answer. I'm not questioning Dr. Horowitz's ability as a doctor, but I'd like to double check."
I was fine with this. She ran a ton of blood tests as well as a specific test for genetic diseases that the lab had a very hard time finding a code for. She also checked my body over for trigger point pain, at which I jumped every time she hit a spot on my body. I was told this is body-wide myofacal pain. She wrote me a prescription for aqua therapy, aka, PT in a pool, which sounds quite awesome. Moving again will be nice.
So I'm starting kineret treatment, which should help figure out if this really is or isn't Stills. Tomorrow is the big day I get to start shooting myself up in the thigh. If it is Stills, I'll notice a significant improvement within a few days.
Improvement would be a great start!
Showing posts with label labarca. Show all posts
Showing posts with label labarca. Show all posts
Thursday, December 23, 2010
Tuesday, December 21, 2010
The sleepless fire-breathing dragon
Well, to put it really nicely, the last 2 weeks, since Dec 11th (coincidently the day after I took my first dose of Kineret) has royally sucked. And by sucked I mean like close to having spinal surgery with major complications post-operatively, which I have experienced twice before. I think I'd rather have another spinal surgery than go through what I'm going through now.
I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.
The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.
I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.
I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.
For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)
It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.
I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.
The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.
I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.
I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.
For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)
It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.
Subscribe to:
Posts (Atom)