Korlym
That odd combination of letters in the title is the medication I've been on for nearly 4 months for my Cushing's. It's intended for those who also have type 2 Diabetes or are failed surgery candidates. The tumor I have can't be detected yet, therefore I fall into the latter category. The drug itself blocks the production of cortisol in my body, which should lessen the symptoms I experience. However, it comes with a list of pretty intense side effects.
1. The biggest is loss of pregnancy or severe birth defects for the baby. Under no circumstance should you become pregnant while on this medication. The main ingredient of mifeprestine is used as an abortion medication so the effects still exist in korlym. It could terminate a pregnancy up to 7 weeks. The problems lies in the fact that you aren't supposed to use hormonal birth controls while taking korlym because the added hormones can throw off your cortisol levels. If you're intending on having kids any time soon, you have to consider this and be extra cautious if not. Become a nun basically.
2. It will increase most of the bad things before it makes them better. A lot of people report having flu like symptoms for several days after first starting, it can make the insomnia and fatigue worse, nausea, abnormal periods or spotting between them, depression, the list goes on and on.
3. Another big downfall is since it blocks the cortisol, it can also launch you into Addison's Disease-the complete opposite where you don't have enough cortisol in your body. You also have to get regular blood work done because it can cause you to have too low of potassium.
I've leveled out now, but I've had my fair share of side effects. The first couple of days after I initially started taking it, I felt very drained and exhausted. I didn't want to get out of bed, even waking up was a challenge. I just wanted to sleep forever. This lasted about two days then slowly got better and I thought that was going to be the extent of it. A week later and I was getting ready to head out for my first trip to Disney when I noticed faint pink splotches all on my torso, upper legs, and feet. I had a couple of welts on the back of my thighs that I assumed were bug bites. I wrote it off and took a benadryl, figuring everything would be fine and it would go away. Only it didn't. Every day it got a little worse. The splotches turned a deep reddish purple and and got a lot bigger until my entire body was covered in itchy, painful bumps. It was growing more prominent, causing my ankles to swell to the point where I might as well not have any. I couldn't shave. Here's some pictures in (mostly) chronological order for emphasis:
Lovely, right? I was so angry because it was screwing with my vacation AND the FIRST EVER time I got to go to Disney. Which is really just my luck, honestly. Nothing like having strangers stare wide eyed at your legs. Anyway, my doctor had me stop the medicine, but when I still hadn't gotten better after a few days, my boyfriend made me go to an urgent care where I got a cortisone shot in the butt and a steroid to help it go away. I stayed off Korlym for a week.
When I started back, I didn't have nearly as much exhaustion, but the depression symptoms were a lot worse. I had a couple days of feeling really low and every little thing made me cry. Thankfully, that improved after a few days. The thing that lasted this time around was the nausea. I felt sick once a day for a solid two weeks. Then I managed to get really sick and was throwing up for 3 days and had to come off the medicine again. It's still undetermined if it was related to the Korlym or not (my mom swears it was).
After another week off the meds and blood work to convince my doctor I was, in fact, not pregnant (wow, amazing, what a concept), it was decided I could start the Korlym back but on the average 300 mg dose instead of the double 600 mg I was on. So I've been doing that for nearly two months at this point. I haven't had any severe side effects this time, like the rash or nausea, but I was having hot flashes for awhile and I haven't had a period since May. You're assigned a patient advocate while taking this drug and mine told me things like the hot flashes happen because your body is trying to balance the hormones in its system. It'll hopefully regulate soon.
Overall, I'm happier. I haven't been feeling as anxious or depressed as frequently. I'm still tired 98% of the time, but I was working the overnight shift all summer and it takes me forever to recover on sleep. I do have more energy, though. My labs are showing my cortisol levels as normal, so it's working at least. I'm a lucky one and I'm grateful for that.
1. The biggest is loss of pregnancy or severe birth defects for the baby. Under no circumstance should you become pregnant while on this medication. The main ingredient of mifeprestine is used as an abortion medication so the effects still exist in korlym. It could terminate a pregnancy up to 7 weeks. The problems lies in the fact that you aren't supposed to use hormonal birth controls while taking korlym because the added hormones can throw off your cortisol levels. If you're intending on having kids any time soon, you have to consider this and be extra cautious if not. Become a nun basically.
2. It will increase most of the bad things before it makes them better. A lot of people report having flu like symptoms for several days after first starting, it can make the insomnia and fatigue worse, nausea, abnormal periods or spotting between them, depression, the list goes on and on.
3. Another big downfall is since it blocks the cortisol, it can also launch you into Addison's Disease-the complete opposite where you don't have enough cortisol in your body. You also have to get regular blood work done because it can cause you to have too low of potassium.
I've leveled out now, but I've had my fair share of side effects. The first couple of days after I initially started taking it, I felt very drained and exhausted. I didn't want to get out of bed, even waking up was a challenge. I just wanted to sleep forever. This lasted about two days then slowly got better and I thought that was going to be the extent of it. A week later and I was getting ready to head out for my first trip to Disney when I noticed faint pink splotches all on my torso, upper legs, and feet. I had a couple of welts on the back of my thighs that I assumed were bug bites. I wrote it off and took a benadryl, figuring everything would be fine and it would go away. Only it didn't. Every day it got a little worse. The splotches turned a deep reddish purple and and got a lot bigger until my entire body was covered in itchy, painful bumps. It was growing more prominent, causing my ankles to swell to the point where I might as well not have any. I couldn't shave. Here's some pictures in (mostly) chronological order for emphasis:
When I started back, I didn't have nearly as much exhaustion, but the depression symptoms were a lot worse. I had a couple days of feeling really low and every little thing made me cry. Thankfully, that improved after a few days. The thing that lasted this time around was the nausea. I felt sick once a day for a solid two weeks. Then I managed to get really sick and was throwing up for 3 days and had to come off the medicine again. It's still undetermined if it was related to the Korlym or not (my mom swears it was).
After another week off the meds and blood work to convince my doctor I was, in fact, not pregnant (wow, amazing, what a concept), it was decided I could start the Korlym back but on the average 300 mg dose instead of the double 600 mg I was on. So I've been doing that for nearly two months at this point. I haven't had any severe side effects this time, like the rash or nausea, but I was having hot flashes for awhile and I haven't had a period since May. You're assigned a patient advocate while taking this drug and mine told me things like the hot flashes happen because your body is trying to balance the hormones in its system. It'll hopefully regulate soon.
Overall, I'm happier. I haven't been feeling as anxious or depressed as frequently. I'm still tired 98% of the time, but I was working the overnight shift all summer and it takes me forever to recover on sleep. I do have more energy, though. My labs are showing my cortisol levels as normal, so it's working at least. I'm a lucky one and I'm grateful for that.
Comments
Post a Comment