Re: I am the Swamp Witch: SJS Survivor (Caution: a bit of medical gore)
Posted: June 17th, 2022, 8:50 am
Hi oak
Thanks it was fun to go perform again!
Oh cool, I hope there are more effective treatments now because it. Is. GNARLY lol. In my case it was kindof palliative in a lot of ways, bc there was nothing to be done to stop the reaction or lessen the severity. Lots of damage control.
Interestingly I did have a bit of a bleeding edge treatment, from what they told me. They called it a "gamma globulin treatment", administered in my IV. I don't know about now but in 2019 it was not considered standard procedure and some physicians did not think benefits outweighed drawbacks, but my team of docs gave me this treatment first thing after they decided it was SJS/TEN. I wonder sometimes how big a part that played in how well I've recovered in the face of such a severe case. I was also being treated in one of the greatest burn centers in the country (I live only a couple hours' drive away), so I got pretty great care all around too.
The frightening thing about SJS/TEN is that it can be caused by a huge variety of drugs, even drugs you have tolerated well before and have used many times. NSAIDS like ibuprofen and naproxen have a higher risk for causing it, as do sulfa antibiotics. So now, on the advice of my brilliant late surgeon, I do not take NSAIDS or sulfa drugs and am now considered allergic to them, even tho I have always tolerated them well.
Thanks for the support here y'all, this is so nice and you guys are great :')
Thanks it was fun to go perform again!
Oh cool, I hope there are more effective treatments now because it. Is. GNARLY lol. In my case it was kindof palliative in a lot of ways, bc there was nothing to be done to stop the reaction or lessen the severity. Lots of damage control.
Interestingly I did have a bit of a bleeding edge treatment, from what they told me. They called it a "gamma globulin treatment", administered in my IV. I don't know about now but in 2019 it was not considered standard procedure and some physicians did not think benefits outweighed drawbacks, but my team of docs gave me this treatment first thing after they decided it was SJS/TEN. I wonder sometimes how big a part that played in how well I've recovered in the face of such a severe case. I was also being treated in one of the greatest burn centers in the country (I live only a couple hours' drive away), so I got pretty great care all around too.
The frightening thing about SJS/TEN is that it can be caused by a huge variety of drugs, even drugs you have tolerated well before and have used many times. NSAIDS like ibuprofen and naproxen have a higher risk for causing it, as do sulfa antibiotics. So now, on the advice of my brilliant late surgeon, I do not take NSAIDS or sulfa drugs and am now considered allergic to them, even tho I have always tolerated them well.
Thanks for the support here y'all, this is so nice and you guys are great :')