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.