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I was hoping to join the trial for this but couldn't get high salivaries. Only high UFCs and they require one of each. The nurse that's running the study at my hospital said they've seen a few patients have really good results! It works as a cortisol receptor instead of inhibitor, so your levels will remain high, but the symptoms from Cushing's will lessen. Sounds promising! Hopefully it will be FDA approved soon!

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How does it affect sex hormones?

 

Keto triggered really bad menopause symptoms (painful dry vaginal tissue+chronic yest), then after my BLA the estrogen and test. fell fast. I really resent Keto.

 

Can it grow pit tumors the same way keto can?

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It actually blocks progesterone receptors, not estradiol, so that likely means it won't lower it. Might even make more of it unopposed, available?

 

Mifepristone actually raises both the numbers and sensitivity of your steroid receptors, so you need less steroids to get the same levels/effects. This lowers your steroid requirements so might actually lower your steroids as an effect, not as it's primary action.

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I don't understand why everyone is putting out drugs that are just to put you in a holding pattern. I tried to get in the SEISMIC study, but when I heard from the nurse that it's basically just like keto and it's not a cure, I thought, why bother?? Is it too difficult for them to actually research something that will cure us?

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It sounds like it could help in diagnosing pituitary cushing's as other patient's don't get AI from mifepristone: http://www.eje-online.org/cgi/content/full/157/5/561#TBL1

 

 

I just wonder what the side effects from long-term use of this drug will be. It sounds great at first, but in the long run......

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In response to the question about growing pituitary tumors - no. It still allows your body to MAKE cortisol, so you still have that feedback loop, but it blocks the receptors that allow your body to use it. So no Nelson's!

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My doctor told me Mifepristone was unsafe because eventually it blocks you from receiving cortisol when you really need it (e.g. you are in a car wreck). He said that even when people were given cortisol replacements, that the body was not able to receive it which could kill you.

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Well, I think there may be wiggle room before it's life threatening but that's something to consider for sure. For one thing, mifepristone actually increases the number of steroid receptors and how sensitive they are, so theoretically, you should be able to reduce or stop it, maybe, and still reap benefits. And dosing covers a very broad range.

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http://jcem.endojournals.org/cgi/content/full/86/8/3568

 

This article is about a patient who was taking 2000mg of mifepristone! He was still able to be treated for AI with a dexamethasone bolus. Maybe it might be a viable treatment option...........

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My doctor told me Mifepristone was unsafe because eventually it blocks you from receiving cortisol when you really need it (e.g. you are in a car wreck). He said that even when people were given cortisol replacements, that the body was not able to receive it which could kill you.

 

Your doctor is patently wrong because I personally knew a woman that had an inoperable brain tumor that was in a study, it was the study that she was in where they discovered that it blocked cortisol. As a result she had to take large doses of steroids that gave her exogenous Cushing's. There's no way that Linda would have had Cushing's from replacement steroids if what your doctor said was correct.

 

She was an amazing woman and I miss her (she eventually died from the tumor): http://www.projectdignity.org/remembering%20linda.htm

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Your doctor is patently wrong because I personally knew a woman that had an inoperable brain tumor that was in a study, it was the study that she was in where they discovered that it blocked cortisol. As a result she had to take large doses of steroids that gave her exogenous Cushing's. There's no way that Linda would have had Cushing's from replacement steroids if what your doctor said was correct.

 

 

I'm not sure that's at all true; dex is commonly used to override steroid receptor defects and insensitivity. One anecdote doesn't negate the doctor's point. It sounds like she may've been on a less than ideal replacement protocol, and that maybe the study dosage and blocking was excessive. Just two possibilities.

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