try clicking on this link to get to the WebMD:Danazol site
Danazol
I think I got it this time.
Wednesday, September 26, 2007
new med
I started a new med today: Danazol. I will post my dosage when I have it at hand. Info can be found at http://www.webmd.com/drugs/drug-7778-Danazol+Oral.aspx?drugid=7778&drugname=Danazol+Oral (the http link didn't work this time, I am experimenting with that) Our hope is that it will slow the progression of the symptoms.
From a purely philosophical perspective, I don't think anyone can be sure that a particular course of treatment is effective at "slowing the progression" in a single case. To what are we comparing this course of treatment? I do tend to wander to that end of the spectrum, often asking questions of myself like, "How do we know that this is doing any good at all?" Well, I can say with regard to my pain meds, if I stop taking them, my symptoms increase in a few hours or within a day. When I start taking them again, the pain subsides. So for those symptoms, I can accept that there is benefit. But for the courses of treatment for other symptoms that we are merely attempting to, again "slow the progression", I am not certain that we are making progress. For the most part, I trust that we are.
From a purely philosophical perspective, I don't think anyone can be sure that a particular course of treatment is effective at "slowing the progression" in a single case. To what are we comparing this course of treatment? I do tend to wander to that end of the spectrum, often asking questions of myself like, "How do we know that this is doing any good at all?" Well, I can say with regard to my pain meds, if I stop taking them, my symptoms increase in a few hours or within a day. When I start taking them again, the pain subsides. So for those symptoms, I can accept that there is benefit. But for the courses of treatment for other symptoms that we are merely attempting to, again "slow the progression", I am not certain that we are making progress. For the most part, I trust that we are.
Tuesday, September 25, 2007
today's thoughts
Thanks to all who responded to my email about viewing my blog. Yes, this blog is almost completely about my journey with my medical condition, livedoid vasculopathy (LV), and related topics. I know it's graphic at times; I do not apologize for that. This is meant as an education for me and others and to help me track my progression.
I was looking through my past postings and noticed that one of the pains I experience now has I also described nearly exactly the same way back in November of last year: the feeling of being kicked in the right shin. A reoccurence of the same pain...interesting. Back then it lasted for a week or two.
I was looking through my past postings and noticed that one of the pains I experience now has I also described nearly exactly the same way back in November of last year: the feeling of being kicked in the right shin. A reoccurence of the same pain...interesting. Back then it lasted for a week or two.
Monday, September 24, 2007
notes from 9-24-07
It's been a very long time since I have taken the time to blog. I will try and take the time in the future. I know it only serves me better to do so.
This spring/summer as my pain level rose again, I tried twice a lumbar epidural. This procedure involves guiding a needle with x-ray into the epidural space in my lower back spinal column and injecting a mix of Lidocaine and Cortisone. My pain level after the first procedure went from an 8 to a 6 before I left and was down to a 4 by the next morning. I had a pain level around 3-4 for the next 2 weeks, than it rose again.
I had the procedure done again, hoping for a more lasting effect. I had this time 4 weeks with lower pain levels; still not as long lasting as we had hoped. We decided not to try a third round since it didn't seem to provide enough of a long lasting effect (6 months to a year).
My pain level has been manageable through most of the summer until lately. Through the last week and a half my pain level at times has risen back to the 7-8 level. I have just a couple of new smaller ulcers. My worst pain now feels like I got kicked in the shin, just above my right ankle on the inside of the shin. There are no external marks or ulcers in the area. It is very sensitive to the touch. It feels like a bruise. No swelling in the area either. The area is not hotter or colder than the surrounding skin. I also have pain near an ulcer on the inside of my left foot near my ankle. I will make another appointment with the MAPS pain clinic to talk about what is next.
I have been seeing Angela Leedy-Larson at that clinic for a while now. She has recommended an implantable device that has electrical leads and sends electrical pulses to your spinal column. This sounds to me very similar to a TENS unit which I tried for a while with no relief; I only was annoyed from the buzzing feeling. This is a permanently implanted device controlled with an external remote control. It just sounds kooky. I honestly don't belief it would work. I am pursuing treatment with meds for now. I can use them when I need, and when I am relatively pain free, I don't take them. I like that aspect of that course of treatment.
My purple skin patches continue to spread. I will upload some more pictures soon. I notice the spread on the underside of both forearms and a little on my belly. For now, it is just annoying.
That's it for now.
This spring/summer as my pain level rose again, I tried twice a lumbar epidural. This procedure involves guiding a needle with x-ray into the epidural space in my lower back spinal column and injecting a mix of Lidocaine and Cortisone. My pain level after the first procedure went from an 8 to a 6 before I left and was down to a 4 by the next morning. I had a pain level around 3-4 for the next 2 weeks, than it rose again.
I had the procedure done again, hoping for a more lasting effect. I had this time 4 weeks with lower pain levels; still not as long lasting as we had hoped. We decided not to try a third round since it didn't seem to provide enough of a long lasting effect (6 months to a year).
My pain level has been manageable through most of the summer until lately. Through the last week and a half my pain level at times has risen back to the 7-8 level. I have just a couple of new smaller ulcers. My worst pain now feels like I got kicked in the shin, just above my right ankle on the inside of the shin. There are no external marks or ulcers in the area. It is very sensitive to the touch. It feels like a bruise. No swelling in the area either. The area is not hotter or colder than the surrounding skin. I also have pain near an ulcer on the inside of my left foot near my ankle. I will make another appointment with the MAPS pain clinic to talk about what is next.
I have been seeing Angela Leedy-Larson at that clinic for a while now. She has recommended an implantable device that has electrical leads and sends electrical pulses to your spinal column. This sounds to me very similar to a TENS unit which I tried for a while with no relief; I only was annoyed from the buzzing feeling. This is a permanently implanted device controlled with an external remote control. It just sounds kooky. I honestly don't belief it would work. I am pursuing treatment with meds for now. I can use them when I need, and when I am relatively pain free, I don't take them. I like that aspect of that course of treatment.
My purple skin patches continue to spread. I will upload some more pictures soon. I notice the spread on the underside of both forearms and a little on my belly. For now, it is just annoying.
That's it for now.
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