staticnrg
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About staticnrg
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Robin
- Birthday 10/22/1957
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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.
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Information from Dr. F's office: Appointment times changed
staticnrg posted a topic in Announcements
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?
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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 investigation
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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 opt
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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 opti
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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
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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
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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
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Look...it's been done for free cortisol in saliva: http://www.icee-con.org/papers/2008/pdf/O-216.pdf hugs...
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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
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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.
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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
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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
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Check this out about hydrocortisone doses
staticnrg replied to Koo's topic in News Items and Research
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
