I don't have a question really but thought I should share this cf related problem.
Over the last 3 weeks my red spots (small bruises) have gotten worse and worse. Last night it nearly crippled me at a cf fundraiser I attended because it has entered my joints.
A bit of history...I was on cipro and then switched to bactrim and still was getting more spots. Some doctors speculated that it was an antibiotic reaction. Both of these drugs I've been on in the past with no problem. My primary care ran all sorts of tests. She analyzed my platelet levels, looked for parvovirus and a host of other things. Everything came back normal. She referred me to a dermatologist. You know you have an interesting condition when at the Hosp. of the Univ. of PA (HUP) you have every dermatologist in the room at one time examing and discussing your case. Many of them had never seen vasculitis other than in textbooks. I told them about Christian's recent vasculitis that is linked to cepacia. They feel that in my situation it is a drug reaction and biopsied (ouch!!) two spots for testing to see if the immunoglobins show an alllergic state. The test won't tell us which drug it is though.
My cf doctor says vasculitis is quite common in cf. I thought it was interesting that very little has been said about it on here. Most notable is a post by Lindsay where there's a great link to an article about vasculitis and cf. It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.
My cf doctor feels it is pregnancy related in my situation not drug related. Maybe this is why Christian and I are both dealing with this at the same time since our children are under two weeks apart?! He said they saw vasculitis the most over the years with cepacia but that my vasculitis is not consistant with cepacia related vasculitis. He explained the cepacia related spots as golf ball sized raised painful spots like Christian has described.
I will attach a picture of mine below. They started out small, not raised and light red. Now they are raised sometimes during the day sometimes not and significantly darker. Also, in the last few days my knees and ankles hurt. So badly that Jared had to carry me home from the fundraiser last night because my ankle is swollen and won't bend and feels like it might explode.
So this is what my cf doctor said. He compares being pregnant to having an organ transplant. Although even though the tissue in me is not my own, my body doesn't reject it. After delivery he says the body is on "high alert" because of being "so ramped up." He said it's like that national guard is out patrolling and not finding much or is finding a cf bug and is going crazy on it. I think he said something about my immunglobins bombarding eachother. What ever it was he did say that all this activity basically is splicing apart red blood cells and causing blood vessels to rupture. It's immune system related. He said I can take Motrin for it and if the joint pain gets too painful I could go on 5-10 mg. of Prednisone but that he'd like to avoid that.
<img src="http://i64.photobucket.com/albums/h178/kakobear/100_0471.jpg">
<img src="http://i64.photobucket.com/albums/h178/kakobear/100_0470.jpg">
Over the last 3 weeks my red spots (small bruises) have gotten worse and worse. Last night it nearly crippled me at a cf fundraiser I attended because it has entered my joints.
A bit of history...I was on cipro and then switched to bactrim and still was getting more spots. Some doctors speculated that it was an antibiotic reaction. Both of these drugs I've been on in the past with no problem. My primary care ran all sorts of tests. She analyzed my platelet levels, looked for parvovirus and a host of other things. Everything came back normal. She referred me to a dermatologist. You know you have an interesting condition when at the Hosp. of the Univ. of PA (HUP) you have every dermatologist in the room at one time examing and discussing your case. Many of them had never seen vasculitis other than in textbooks. I told them about Christian's recent vasculitis that is linked to cepacia. They feel that in my situation it is a drug reaction and biopsied (ouch!!) two spots for testing to see if the immunoglobins show an alllergic state. The test won't tell us which drug it is though.
My cf doctor says vasculitis is quite common in cf. I thought it was interesting that very little has been said about it on here. Most notable is a post by Lindsay where there's a great link to an article about vasculitis and cf. It says that at least 2-3% of cfers will experience vasculitis in their life (usually in end stage WTF??? I'd like to think I'm far from that). It is speculated that even more experience it but don't report it. Where in the general public it is very rare.
My cf doctor feels it is pregnancy related in my situation not drug related. Maybe this is why Christian and I are both dealing with this at the same time since our children are under two weeks apart?! He said they saw vasculitis the most over the years with cepacia but that my vasculitis is not consistant with cepacia related vasculitis. He explained the cepacia related spots as golf ball sized raised painful spots like Christian has described.
I will attach a picture of mine below. They started out small, not raised and light red. Now they are raised sometimes during the day sometimes not and significantly darker. Also, in the last few days my knees and ankles hurt. So badly that Jared had to carry me home from the fundraiser last night because my ankle is swollen and won't bend and feels like it might explode.
So this is what my cf doctor said. He compares being pregnant to having an organ transplant. Although even though the tissue in me is not my own, my body doesn't reject it. After delivery he says the body is on "high alert" because of being "so ramped up." He said it's like that national guard is out patrolling and not finding much or is finding a cf bug and is going crazy on it. I think he said something about my immunglobins bombarding eachother. What ever it was he did say that all this activity basically is splicing apart red blood cells and causing blood vessels to rupture. It's immune system related. He said I can take Motrin for it and if the joint pain gets too painful I could go on 5-10 mg. of Prednisone but that he'd like to avoid that.
<img src="http://i64.photobucket.com/albums/h178/kakobear/100_0471.jpg">
<img src="http://i64.photobucket.com/albums/h178/kakobear/100_0470.jpg">