Brooklyn46

[berros]

I,m new here, my husband was diagnosed with PSP 2 month ago.

Any one out there considering Stem cell therapy?

Pease let me know.

[Dadshelper]

Welcome to the site but sorry you had to find it. I have no knowledge of stem cell trials/therapy but if you try the search feature at the top of page there may be some past posts on the subject.

Ron

[LuisRodicioRodicio]

Hi berros!

In these almost 7 years reading news related to PSP I do not remember any related to "stem cells" but it is possible a laboratory they are trying. The suggestion of "Dadshelper" can help you.

I'm sorry PSP has entered your family. This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis

[grafixapn]

My wife has PSP and a few days ago we saw her neurologist who told us stem cells for PSP doesn't work. I will be making a posting in a few days to share that my wife's doctor will be inviting other patient''s doctors to contact him to set up a odd type of drug trail. Currently doctors are prescribing Parkinson's drugs, since nothing else works. That is no longer the case. There is a drug, not a cure but one that slows the progression of PSP down to a snail's pace. The problem with trials is those with PSP are only 6 to 10 in 100,000. Plus those who conduct trials want those that have have had the disease for under 5 years. Give me a few days to compose the post. The name of the drug is Tasigna. If you go to supportpsp.com there is some information on the site. What's new is my wife's doctor is asking people like yourself to ask your doctor to call him. The idea is to form a odd drug trial. If our doctor can convince your doctor to prescribe the drug Tasinga, and then forward your progress over the next 2 years to his office, there is a high chance to force the FDA into accepting Tasigna as the best treatment for PSP. The bad news is that currently no medical service or insurance will pay for the cancer drug used off label. On the website I detail that the cost in the USA is $14,000 for 28 capsules and I found a place in India that charges around $700 for Tasigna. My wife use to be a doctor, and convinced her neurologist to write a prescription. My wife required some major surgery and the transplant doctor refused to allow her to take the Tasigna we brought to the hospital until it was tested; it tested as the real drug. The sad fact is it will come down to if one can afford the cost of the medication. It's a sad thing to have to say, but the number of people who have PSP is too small, and until we can get 200 people taking this cancer drug and showing positive results, the cost of the drug will remain self pay. I promise to go into greater detail in a few days.

PS: my wife is going on 16 years with PSP. Still uses a walker, and had her speach improved when she started with the generic form of Tasigna. We were offered the name brand at $300 less than we paid for the generic, it took 6 months before my wife felt she could say that the brand named drug Tasigna worked better than the generic drug for PSP. The problem with generic drugs is they use different fillers that can affect how the drug is absorbed, and then there is the dosage. Most generic forms of Tasigna come at a higher dosage; we learned the hard way that more isn't better. There is something called the placebo effect. It takes 12 weeks to know what is real and what one imagines. Being a doctor helped my wife to realize the brand named drug was better for those with PSP. Also being a doctor made it possible for her to communicate with the doctor at Geogetown University in Wash DC who did a study on Parkinson's patients that used this drug that removes Tau from the brain. The Geogetown doctor agreed that his findings matched what my wife found. For more information about that study, you can find it also on the website I provided.

I wish you the best. I hope you can be one off the 200 we need to force the FDA to accept , not a cure, but a drug that will improve the quality of life for those with this horrible disease.

Andy