staticnrg

Do you want to keep the Cushing's Help message boards? Do you know that MaryO spends thousands out of her own pocket to keep it running? Do you want to wake up one day and find it gone? If the answer to the last one is "no", then take the time to donate what you can each month/quarter/year. I know I'm not here much anymore since my BLA, but I still care that others have this support. I would have never found a doctor to help me nor understood this disease if it hadn't been for this site. There are so many more out there who need them, too. If you are here, I suspect you do, too. If you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal Amount: 2906.00 USD. It shows we still need to donate at least $2104.39 for this year. So, skip that lunch out at McDonalds or Wendy's and donate the $5 or $6 dollars instead. PBJ will taste really good that day! If we all donate just a little bit every month, it will make a difference. Thank you, Robin

ALERT DR. F PATIENTS: The Tuesday night, 9/18/12, clinic, has been moved to Wednesday, 9/19/12. The Tuesday night, 9/25/12, clinic, has been moved to Monday, 9/24/12. The Tuesday night, 10/2/12, clinic, has been moved to Wednesday, 10/3/12. The Tuesday night, 10/9/12, clinic, has been moved to Wednesday, 10/10/12. Deposits as always will be due at 5PM, the Friday before next week's clinic. No 10" drive-by phone appointments September 17, 18, 25, and 26. No 10" drive-by phone appointments October 1, 2, 8 and 9.

I think we can take questions in the BTR chat, too, can't we, MaryO?

Availability Of An Investigational Drug For Severe Cushing’s Syndrome On a Compassionate Use Basis December, 2011 We would like to make patients aware that mifepristone, an investigational drug that blocks the action of cortisol and is being developed by Corcept Therapeutics Incorporated, is now available on a compassionate use basis for eligible patients in the United States with Cushing’s syndrome who have no other treatment options. Under this compassionate use program, the FDA allows seriously ill patients who lack satisfactory alternative treatment options to use an investigational new drug that is still under development. Corcept has completed a Phase III trial investigating the safety and efficacy of mifepristone in patients with endogenous Cushing’s syndrome. The information from that study has been submitted to the FDA for review of safety and efficacy. The company has submitted a New Drug Application (NDA) seeking approval for this drug. Patients interested in using mifepristone should consult with their endocrinologist. Their endocrinologist, in turn, should contact Corcept for information about the compassionate use program. Please note that Corcept will provide information solely to physicians. For more information: http://www.corcept.com/cushings_expanded_access Toll Free: 1-877-367-6550 E-mail: EAP@Corcept.com Dr. F asked me to post this again. (MaryO, I hope this is ok.)

Cushings-Help.com Announces The Availability Of An Investigational Drug ForSevere Cushings's Syndrome On a Compassionate Use Basis November, 2011 We would like to make patients aware that mifepristone, aninvestigational drug that blocks the action of cortisol and is being developedby Corcept Therapeutics Incorporated, is now available on a compassionate usebasis for eligible patients in the United States with Cushing’s syndrome whohave no other treatment options. Under this compassionate use program, the FDA allowsseriously ill patients who lack satisfactory alternative treatment options touse an investigational new drug that is still under development. Corcept has completed a Phase III trialinvestigating the safety and efficacy of mifepristone in patients withendogenous Cushing’s syndrome. Theinformation from that study has been submitted to the FDA for review of safetyand efficacy.. For information on thetrial results see http://www.corcept.com/cushings_clinical_trials. The company has submitted a New DrugApplication (NDA) seeking approval for this drug. Patients interested in using mifepristone should consultwith their endocrinologist. Theirendocrinologist, in turn, should contact Corcept for information about thecompassionate use program. Please notethat Corcept will provide information solely to physicians. Toll Free: 1-877-367-6550 Website: www.corcept.com/cushings_expanded_access E-mail: EAP@Corcept.com (Edited/changed at 8:54 PM EST by Dr. F's request. He sent another which changes the wording a tiny bit.) This post has been promoted to an article

These look like great questions. If you haven't listened to the first two live interviews, you should do that. Some questions may be answered already in those. Robin

Hi, folks... Try here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B3VeLPLQdbGhZGJhODU4YmQtZjgxZS00ZDYwLThjOGItYTY5NmY1YTVlYTdl&hl=en If you want to download it, go to the left and click "file" and use the download option. Hugs, Robin

I don't know if you can view the attached file or not, but that's the full text journal article about what Tofu just posted. Excellent find, Tofu! The range is 1pM to 10 nM. 2.78 nM = 1ng/ml. I'll do the conversion to units we know (ug/dL) after while. Can't right now... Robin C0AN00242A.pdf

Look...it's been done for free cortisol in saliva: http://www.icee-con.org/papers/2008/pdf/O-216.pdf hugs...

I have ideas, but no time to post them now. As with diabetes, a meter would only be used so the individual could track his/her cycles and cortisol levels. I think how many times I would have loved to have one to decide if my trip to the lab or doing a UFC is worth doing at the time. I think for episodic/cyclic Cushing's patients (which tends to be most of us), it would be a treasure and make it so much easier to figure out when to test. Also, I think it would help us determine if we might have a recurrence, taking away the guessing game and sending us back to our endos. It's hard to refute a diabetic who shows his/her meter showing high blood sugars. I think that a meter would have to be approved by the FDA to be reputable enough to be accepted, but once that hurdle was passed, it would be used and accepted. Some will resist, obviously. I'm sure much testing to validate the levels the meter shows to lab-tested results would have to happen. Shoot , it woul be awesome if it only did increments of 5ug/dL.... a "less than" or "greater than" kind of thing. Later....must run...students coming in. Robin

I found the email address of the professor under which Ms. Campbell was working and emailed him about our questions/dilemma. I hope he responds. Hugs, Robin Great, Susan!! Awesome.

Professional athelets also test cortisol levels. And Addisonians/CFS sufferers would benefit, too. Their are a lot of folks, and if more knew about it, more would benefit from one. LisaMK looked into one overseas used on pigs but said they couldn't get it sensitive enough for humans. They tried. Here are two other possibilities, though, I've been following. I sent the info to Dr. F a while back: http://www.cnn.com/2...dex.html?hpt=C1 http://www.technolog.../?nlid=2672&a=f The second is at UCLA. I think we need to push someone somewhere about this. Pfizer? They are good about the GH. If enough of us do it, maybe..... Robin

Wow, now that's what I'm talkin' about!!! Yes, yes, yes.... most of the "research" done today is skewed, especially if done by a medical/pharmacological company. Even researchers at the NIH seem to skew their research/studies by choosiing patients which show what they want to show. No, I can't prove it exactly, but the history of folks on this board say a lot. Good article!! Hugs, Robin

Since prednisone has such a long half-life, I don't know if this will work for you. It may keep you up all night. Let us know, ok? Hugs, Robin