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Everything posted by BDen13

  1. The manufacturer of this drug, Cortendo, was kind of a mess until recently, but they recently hired a new CEO, staffed up their office in the US, and finally got the ball rolling on their clinical trial. Hopefully the results are good. It would be nice to have another option that actually works.
  2. Not a surprise, but puts institutions in a hard spot as it basically implies that most Cushing's patients where adrenal has been ruled out need an IPSS, yet few institutions have experience performing them.
  3. Yes, it could be a bad thing, as it could make it more likely that people with cushing's will be prescribed the now-covered obesity treatments and sent on their way, without treating the cushing's.
  4. Well, if it's hydrocortisone that wouldn't be a treatment for cushing's. This document focuses on treatments for cushing's.
  5. This book just hit the shelves. It's intended for investor institutions in the Pharma industry. You can buy it for the low low price of $2000, but a lot of info can be gleaned just by reading the table of contents. http://www.researchandmarkets.com/research/rdf6gm/pituitary_acth It's a 47 page analysis of all the drugs currently in the development pipeline for Cushing's disease. In particular, it discusses one that I was not aware of called Normocort (COR-003) - it is a modified version of Ketoconazole that is intended to work more effectively against cortisol synthesis and less effectively against the metabolic enzyme CYP7A, which is what causes all the common side effects of Keto. This is a very good drug because if everything pans out it will: 1. Be more effective in reducing cortisol than Ketoconazole with fewer side effects 2. Unlike Korlym, it will actually lower serum cortisol, not just block it 3. Unlike Signifor, it will not require an injection or cause hyperglycemia 4. Unlike Signifor, it should work on patients with Adrenal cushing's Possible downsides are: It may still be less effective than Korlym or Signifor at achieving clinical relief of symptoms As such a powerful cortisol inhibitor, in cyclical patients it may induce occasional AI incidents or may be difficult to dose Unlike Signifor, it does not act on the tumor and therefore does not reduce tumor size or ACTH production. http://www.cortendo.com/pipelines/normocort-cushings-disease/
  6. Hmm Interesting - these papers come from the same place my endo works. I wonder if they're still working on this or if they hit a dead end.
  7. As sad as it is, the fact that big pharma now has something at stake in treating cushing's, there will be a lot more made into increasing awareness and getting doctors more information on properly diagnosing cushing's even in difficult cases than patient advocates could have ever done on their own. My endo is doing about 1-2 speeches on cushing's every month to various conferences, all funded by Corcept and Novartis.
  8. Have you done any other cushing's tests, like a late night salivary cortisol or a 24 hour Urinary free cortisol? Those are usually the first tests used to diagnose cushing's, rather than the dex suppression test.
  9. I was not talking about reoccurances, I was talking about success rates of initial surgery, which from that report, are around 80%.
  10. Also it is not true that "most" people require multiple surgeries. Only a small percentage do. I took a month off work but I work from home. I probably would have wanted a few more weeks if i had to go into an office. Wait until after your surgery to order a bracelet. I got an electronic one so I can change it.
  11. Welcome to the site. Keep in mind that the people who have successful surgery are less likely to become long-term members of this site, so the user base of this site probably gives an unfairly negative representation of those who have had surgery. The fact is that 80% of initial pituitary surgeries are successful. Your tumor is average sized as far as pituitary tumors go but a little bit on the large side when compared with the tumors that typically cause cushing's. Yes, it does keep growing. Recovery will be tough as the cortisol has done a lot of damage to your body over the years. It's hard to build that back up. Do you have a plan for your surgery? It's essential that your surgeon to have done dozens if not hundreds of these surgeries if you want a successful outcome.
  12. The only way to recover from cushing's caused by steroid use is to stop using the medication and give your body the time to recover. It can take a few months.
  13. Your 24 hr UFC was in the normal range (from my research it appears that 276 is the upper reference range in nmol for the 24 hour UFC), but at the upper end. You suppressed on the DST, which indicates that you likely don't have adrenal cushing's.
  14. Great news - an effective medical treatment option is outstanding and it's very pleasing to hear that the drug seems to be progressing with no apparent hiccups. The ability to treat the disease medically rather than surgically may also mean more endocrinologists will be willing to diagnose the disease in borderline cases as they will be able to administer and monitor treatment themselves rather than refer to a neurosurgeon. Also, since this drug actually lowers serum cortisol, it is vastly superior to Korlym. However, the big downside is the current preparation as a twice daily subcutaneous injection. After my pulmonary embolism I had to do a subcutaneous injection of Lovenox twice daily and it sucked. My insurance covered it, but the cost was somewhere between $880-$2000 every two weeks - and this was for the generic! My friend who works in the medical industry said that most of the cost was due to the cost of the sterile pre-loaded syringes, which cost several dollars each to manufacture. Because of this, until the intramuscular formulation is approved, Pituitary surgery will probably remain the most cost-effective treatment, despite its very high one time costs.
  15. I have found it difficult to run or do things on the elliptical like I used to. I found that cushing's made me pretty weak, so I have been lifting weights. Nothing that heavy. It makes me sore for a day or so after, but I feel a lot better the 3rd or 4th day after and each time I work out I feel more "back to normal". I generally do some calf raises and wall pushups then some sets with 10 lb dumbells then do some squats on the squat machine and then some work on the chest machine. I try to go sort of quickly between sets so that I get a cardio workout without having to do typical "cardio" like jogging or spinning. Also, it's good to have someone who had bronchial carcinoid ectopic cushing's on the site. I often read about them but have yet to talk to one. My endocrinologist strongly suspected it since I had very high ACTH readings and my chest CT revealed an abnormality in my lung. However, IPSS showed that I had cushing's disease and I had successful pituitary surgery in May. If you'd like to share, I'd be interested in knowing about how your tumor was discovered and diagnosed and any labs you happen to have. We're always trying to increase our knowledge-base here.
  16. Do you know what blood test she did? One blood test is not a suitable way to diagnose cushing's syndrome. You need to see an endocrinologist who specializes in cushing's - we have some other members on this site from the UK who can help you with info on how to do that.
  17. When I said "blood pressure" the second time, I meant to say blood sugar.
  18. You do seem to have a normal diurnal rhythm but your evening and midnight cortisol readings are very high and do indicate cushing's. How is your blood pressure? Have you ever had your blood pressure or blood potassium levels tested? Been getting any recurrent infections lately? Those are some ways cushing's can manifest itself in people who don't gain a lot of weight.
  19. Ask the doctor what else he thinks might be the problem. The tests you have been given are not the proper tests to diagnose cushing's.
  20. Morning testing is not a good diagnostic test for cushing's. Cortisol testing for cushing's needs to be done at night. A cortisol sample taken at 11 AM would generally be a bit lower than one at 8 AM in a normal person, not higher (depending on a number of factors depending on when they woke up, etc.). Your plasma ACTH is quite high but a single high morning plasma ACTH is not indicative of Cushing's on its own. If Cushing's is suspected you need proper testing for it - 24 Hour Urinary Free Cortisol and Mignight Salivary Cortisol and/or Midnight Serum Cortisol.
  21. If I'm interpreting this correctly and all your blood and salivary tests have been at 8 AM, then no - you haven't been tested properly. The best way to diagnose cushing's is to test late at night. It's very hard to see a microadenoma on an MRI - especially if the correct protocol was not used (I expect it wasn't) and if the reader is not experienced in detecting pituitary microadenomas.
  22. Yep, lack of sexual desire/performance is very common in men with Cushing's. I always think of it this way - Cortisol is a stress hormone - fight or flight stuff. If it's something that helps you survive in that situation, cortisol makes your body focus on that. So it makes your body put on fat rather than muscle, stop bleeding but not heal, have high blood pressure, not hurt much, etc. The last thing your body worries about in that sort of situation is getting it on. I really stress going to an endocrinologist that specializes in cushing's or at least pituitary disorders. Cushing's is a rare disease and most endocrinologists focus their practices largely on diabetes these days and are therefore unable to correctly diagnose it.
  23. Salivary Cortisol testing has proven to be pretty reliable. They'll of course want to run other tests but many endocrinologists who are the most highly involved with Cushing's say that Salivary Cortisol testing is the best way to diagnose it. A 4.3 Midnight salivary cortisol is very high and on its own almost indicative of cushing's syndrome on its own. Yes, I had chest pain and heart palpitations on my worst days when I had cushing's. My hypertension from cushing's also responded very poorly to medication - the only one that seemed to have any effect was Lisinopril which is very similar to Losartan which you are taking. Dr. Geer at Mt. Sinai says she specializes in Cushing's and other Pituitary disorders and is doing research with Cushing's patients - however, I don't have first hand info on her. I have heard recommendations for the pituitary surgery program at Mt. Sinai with Dr. Post. The list on this site also recommends Dr. Carlson who appears to be located on Long Island - http://www.stonybrookphysicians.com/doctor/CARLSON_MD_HAROLD_868.asp
  24. Ask for copies of your labs - they have to send them to you. Then find another endocrinologist.
  25. Your symptoms are very similar to mine and most men who get cushing's. Additionally your salivary cortisol labs are very indicative of cushing's - note that you don't vary much throughout the day while a normal person peaks in the morning then hits almost 0 at late night. It's good that you have copies of your labs. If you let us know where you live we can help you find a good endocrinologist hopefully near you.
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