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About chanceofrain

  • Birthday 10/11/1983

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  1. there is also some brands at whole foods made by Weleda-I've been using it for years for this very reason. Just goes to show that we really have to watch out for ourselves.
  2. Thank You. We can never forget that this is a place of support and can never replace the expertise of a doctor.
  3. Jackie, Sam's mom is a regular on these boards. I am sure she will pop in to say hi. She will tell you that Sam is doing great-no pit issues and is a normal fun kid. I am so glad that Jackie and Sam were willing to tell their story because it really helped put cushing's on the map and helped many people seek a diagnosis.
  4. This is great!! I would love to know why I can never get my ferritin up to a normal level no matter how much iron I take. Thanks for posting this. I bet Dr. F will be interested in this info too. See there are some pretty smart people here in San Diego :-) Jaimie
  5. http://www.nytimes.com/2008/01/31/world/asia/31pharma.html
  6. This is still current. I believe they just got the first study center up and going in January. I met with the heads of this study and you know, it is interesting because they say it is for cushings but they aren't really monitoring for cortisol during the study. Also, they werent sure if a concurrant hydrocortisone therapy could be used--like how with ketoconazole patients are usually put on hydrocortisone to prevent an adrenal crisis. Another question to ask if you are being put on this drug is where are they getting the meds from. There was an article in the NY times about 4 months ago stating that RU486 was being made in china and run by the same plant owners who were fined for having I believe it was lead in some of the drugs. I hope this has changed but when It was broght it up to the head of the study they didnt have an answer. I will look for the article and post the link. Also, the long term affects of RU486 are not well known yet. I believe it has been used for alzheimers patients in a study for 6 months at most. Not to be Debbie Downer here, I just think that before anyone voluntarily enters the study it is important to know this info. I think there are other, better studies out there for cushings.
  7. Thanks so much again for the help, it is so nice and helpful of you!:)

  8. This is my opinion only, but I personally met with a few of the head investigators of the corlux study and wonder if this is going to be a beneficial study. If anyone is interested in joining this particular study please feel free to PM me to hear my opinion.
  9. I sure hope this works bc the only other good test was the idocholesterol test and UofM was the only place that made the isotope and they stopped like 2 years ago.
  10. I know it is supposed to be long term, but from the results i know of i think this is questionable at this time. I know it is also very hard for a cyclical patient to be in the study unless he/she can have two consecutive 2x elevated UFC's at the time of screening. Hopefully down the road this will be a good option for all cushing's patients.
  11. The drug is promising but from what I've seen thus far there is no documented evidence of tumor shrinkage and there may be issues with the drug working for a while but then after a while the tumor is no longer responsive to the drug. I think it is going in the right direction but I wonder if it will be a long term or short term solution like keto.
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