Well I haven't been on in a while as there as been no good news especially with Covid. I have been waiting for several months for my medication Vyvanse to be approved by Benefits and Pensions since my insurance company denied it for being "off label." Received a letter from this week from Cooper Institute (Dr. Check). It states, "Effective immediately, our office will no longer write prescriptions for these medications under any circumstances for New Jersey residents or from our New Jersey office." The State of NJ Board of Medicine ordered that he immediately stop prescribing these medications for any medical conditions to NJ residents, or from his NJ office." Dr. Check will be allowed to keep his license for his treatment of patients with infertility but he must stop prescribing for our disorder immediately. The head of the NJ Board of Medicine hates Dr. Check for whatever reason and has stopped him from treating us. He feels horrible as his patients in NJ have been calling and don't know what to do now. He will be gradually seeing patients who only suffer from the edema problem with the disorder (not the gastroparesis or hives from toxins and the various other symptoms one may have besides the edema). He is using Cabergoline and will see patients in his NJ office. It is used for hyperprolactinemia and would be monitored with blood work for prolactin levels. I know years ago a doctor told me I had a brain tumor due to high prolactin levels (hormone secreted from pituitary gland). I knew I had a hormonal imbalance and that this was not the case, which it was not. I am also going to go on an herbal equivalent of the Dexedrine/Adderal/Vyvanse medication which did work for me but did cost a few hundred dollars a month.
Wish I had better news. This medication has been started with some patients already. Some see a benefit and for others, it is not working. I will keep you updated as I learn more. In order to treat us as before, Dr. Check would lose his license. The great state of NJ doesn't care what happens to the people who depend on the medication. I have no doubt we will see many more hospitalizations stemming from this decision.
The only thing the state offers is a treatment program from symptoms not from the disorder but if you are addicted to the medication. Ignorance and greed is at the center of this. There will always be haters for those too that think outside the box and get good results. No money to be made from us as the current meds (other than Vyvanse which insurance doesn't want to pay for as expensive) are inexpensive. He has had similar problems with success with stage 4 cancer patients and no one wants to listen as they want people to use chemo and radiation and such which will make them lots of money.