A challenge was put out to get people blogging and raising awareness for Cushings, so I thought it was a really good time to actually get busy here and post an update.

Since I last wrote, quite a bit has happened. Well, relatively speaking that is! My numbers WERE starting to look good after I increased the caber to 3.0mg 3 times a week and I was even able to pee a normal pee! So very exciting, but like with everything else in my life, it was also short lived. My numbers started to go up again back in January and they've slowly been on the rise since. At my last appt my endo told me that if my numbers went up we would look seriously into getting the new drug, SOM230, aka Pasireotide. Well, I wasn't feeling good in February and actually thought I was low, so I went in to test and instead of being low, I was running really high again. I panicked and my endo just told me to be patient, so I gave it a bit of time then tested again in March and I just keep going higher. I even did two 24hr urines (my most hated tested) a week apart and my cortisol jumped 100 pts from one week to the next. :( I got a copy of my blood labs and it showed my cortisol up, ACTH up, thyroid low and blood sugar up.. so I called in because I was not going to wait another month and a half for my scheduled appt and I got in to see her last week. She agreed that things were not on the right track anymore. :(

The Plan now is to get SOM230. We thought we could get it fairly easily, but somebody gave us the wrong info so I'll have to apply through "Compassionate Use" which from my understanding simply means that you must apply to the government for special permission to use a drug that's not available here yet. The fact that it's been approved overseas will really help my chances, and I can also prove that I've had two surgeries, tried almost a year of Mitotane, tried ketoconazole many times and now I'm coming up almost 2 year on Cabergoline and none of them have been long-lasting cures. So anyway, my endo nurse started the paper work already for me and they just needed to also know my A1C (the biggest side effect of the med is raising BS) and they also needed a current EKG which I rushed to get done - and the QT Prolongation is what they were looking for specifically and apparently mine was normal! I'm hoping very much that this means I will have an easy time getting this drug because I need it badly.

In the meantime waiting for SOM to come through - I've started metformin. My sugar has been creeping up slowly and it's becoming something we can't really ignore anymore. You have to admit that I've been very lucky in this regard. One of the Hallmark symptoms of Cushings is high blood sugar and for almost 8 years I've avoided it. My hatred for sweet foods and many carbs has probably helped me a lot! Now though my endo said if she just looked at my A1C she would say I'm diabetic, although from the bit of daily testing that I've done, it hasn't looked too bad. But because of trying to get SOM230, I really can't afford to have messed up BS going into it considering what it seems to do on it's own!! I've started with just 1/2 of a metformin pill once a day and will slowly work my way up on it. As soon as SOM comes though, I will stop so that we can see what the new drug does to my BS on it's own. I am also going to push the caber past the max dose. Up until now I've been taking 3.0mg 3 times a week, and this past friday, I took my first dose of 3.5mg and will keep it at 3.5 X 3/week for a little while and move it up again after that. She said to aim for 12mg/week and stop there but I'm hoping SOM comes before that! Once I see how the metformin goes, I'll also consider adding back keto again. As much as I hate it, the "start-up" effect of quickly bringing cortisol down can't be denied, so to just shock my cortisol and scare it down will be good for me. :/

And now I wait.. just anxiously wait. I need this new drug to come fast and more than that, I need it to WORK! I know surgery is always an option down the road for me.. but I'm really not ready for that. I just need these meds to WORK!!!