What I’m going to detail is no joke. There is a Neurologist, a Dr. Johan Samanta, who is willing to go beyond what any other doctor has offered or suggested in order to force other doctors all over the world to prescribe the drug Tasigna. This is a drug that has shown it can restore lost abilities, depending on how long a patient with PSP has had a loss of a function, but at the same time has shown it can slow the progression of the disease PSP to a snail’s pace.
Before I explain his offer to you, to make things clear why he is suggesting this radical approach, I feel we need to understand how we got to having to do things in a different way.
Depending on where and what you read, there are only 6 to 10 people per 100,000 who get PSP. A trial normally is offered to only those who have had the disease for no more than 5 years. A trial to be successful, requires a minimum of 50 people that all need to live close together, so that they can be tested on a regular basis.
The sad fact is due the low number of people with PSP and being scattered around the world, there is no way of doing a standard study.
What Dr. Johan Samanta is willing to do is to have YOU have your doctor contact him at no cost to anyone. He is willing to share his findings of his patients (with their permission) who he prescribed Tasigna for, and their remarkable improvements. His hope is to convince your doctor to join with him in also prescribing for you the drug Tasigna and then tracking your progress and forwarding your basic information (no name required) to be able to force the medical community to stop trying to treat PSP with drugs used for Parkinson’s patients. Most doctors know Parkinson’s drugs may work for a short time, but in the larger picture do nothing for those with PSP.
By the full name of PSP, we all understand that the first P in PSP stands for Progressive. Time isn’t the friend of anyone with this disease. Time is running out for many, and it requires drastic measures!
A study like what is being suggested has never been done. There will be no age or other restrictions, but we need a minimum of 200 people over a 2-year period using the drug Tasigna to show its effect. But this study comes at a cost. Currently there is no government agency or insurance company that will pay for the cost of the drug. I’m sorry to say that there will be some that just due to the high cost of the drug won’t be able to join the study. To make things a bit more complicated, there are generic forms of the drug, Nilotinib, that had some success, but the findings showed that the name drug, Tasigna, seems to do better. To have any study where the end results can force the cost of drug to be covered requires that all in the study use the same drug. Generics, depending on where they are made may contain different fillers during compounding of the drug, and this can cause the absorption rate to vary. Plus, many of the generics have varying dosages, making using them unsuitable for use in the study. A successful study requires eliminating as many variables as possible.
Dr. Samanta is a Movement Specialist Neurologist and his phone number is: 602 277-2228. He is located in Phoenix, Arizona in the USA. Please remember that Arizona is on mountain standard time, and doesn’t observe daylight savings time. His office is open Monday to Friday 9AM to 4PM.
Dr. Samanta is doing this without asking anyone to pay him anything. He is someone who is a true believer, and wants to help not only his patients, but also your loved ones.
It all comes down to YOU, and your ability to have your doctor contact Dr. Samanta. I guess this comes down to a test. Accepting a call from another doctor is time-consuming, but for Dr. Samanta that is actually the easy part. Taking the initial information supplied by your doctor, and updating everyone’s records every 3 months is actually the heavy lifting, as all those numbers have to be analyzed and written up and submitted for peer review. My big question for you is if your doctor is willing to make the call and get involved? If he or she isn’t, it might be time to change doctors!
You need to understand that Tasigna is not a cure, and my wife isn’t the only patient of Dr. Samanta who he prescribed Tasigna for. To date every PSP patient who has taken the drug has done better. A lot has to do with the stage the PSP patient is in. Just before my wife started taking the drug, she started to lose her ability to talk, and the volume of her voice was dropping. It took 6 months before my wife and I saw much improvement. The first thing I noticed was my wife lifted her leg up in getting into the shower. Up to this point, she would drag one leg over the ledge. That day she picked up her leg and never scraped the ledge. Within the next few months her mind came back and then the volume of her voice. It’s been a little over 2 years now that she has been taking Tasigna, and last week, 9/20/2018, she had another standard exam by Dr. Samanta. He was blown away! My wife’s eye movement, up and down, continued to still improve. It was at this office visit Dr. Samanta agreed to accept calls from other doctors. Tasigna is adversely affected by antibiotics, they don’t play well together. Hair loss has also taken place; just some. But I have had my wife, she is still using a walker, and laughing at my bad jokes. Something that I would have lost had she not taken Tasigna. This study may not be how things are normally done, but with low numbers and the afflicted being scattered all over the globe, this is our only chance to help not only ourselves, but those who follow. I will continue to purchase Tasigna until my wife is gone. For me, this study does nothing other than make more work for me. If and when you visit the website supportpsp.com you will quickly learn that for me, the website keeps me sane. I truly hope you will join and appreciate the offer Dr. Samanta is offering your loved one.
As many of you know, as this isn’t my first post, my wife, also a doctor, found a study using the drug at Georgetown University located in Washington D.C. It was my wife who convinced Dr. Samanta to write the first prescription for the drug my wife got. Here in the USA the drug manufacture Novartis charges $14,000 US for 28 capsules. When my wife told Dr. Samanta that we ordered the drug from India, things didn’t go well. Dr. Samanta insisted on seeing everything before my wife was allowed to take capsule one. Since then my wife required some unrelated major surgery, and the transplant doctor refused to allow my wife to take the Tasigna we brought to the hospital until the hospital could test it; it turned out to be the real thing. Again, as many of you know I have a website that I run for our local support group that just contains information we make available to newcomers to our PSP support group. On our site I have an email address for where I purchase my wife’s Tasigna. The cost is around $700 US for 28 capsules and the cost depends on how many boxes one buys at a time. So that you can understand where I’m coming from, if you can locate a lower cost for the real Tasigna, please share. I’m not in the drug business, and the cost is hurting me too. The web address is again: supportpsp.com. I’m just a caregiver like yourself, like you my loved one has this horrible disease PSP. If you belong to a support group and would like a free space on our website or you have information I have missed and want everyone to know about it, I also make this offer to share the website.
Only together, and it doesn’t matter where one lives, we can make this drug trial work. The reason is simple, we all understand the pain that comes with a loved one with PSP.
Adventures in neverland
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