Winsantor latest info.

Welcome @hippocraticoath, I don't think WinSantor has started their phase three clinical trial yet and are having trouble with funding. There are a couple of other discussions you might want to read through for more information.

-- Is there any update on Winsantor drug?: https://connect.mayoclinic.org/discussion/is-there-any-update-on-winsantor-drug/
-- Winsantor drug testing: https://connect.mayoclinic.org/discussion/winsantor-drug-testing/

They have applied for Compassionate Use in USA, extended use in Canada & Europe (?) and working on a Phase 3 (in Europe?) They have a go fund me effort underway. You can go to website & sign up for their newsletters (less than one per month IIRC)

Here is someupdated info.
https://www.reddit.com/r/smallfiberneuropathy/comments/1elic2s/winsantor_expanded_access_update/

They are in stage 3 of testing it’s on their website. It’s most frustrating that the majority of all the focus on neuropathy is for diabetics not those that have it from autoimmune disorders and other causes. There current focus is diabetes.

Yeah, sorry to hear that they are prioritizing diabetics;(guess they’re targeting the larger group that it’s most affecting but it does little to comfort those that are affected.) hopefully it won’t be too long where it can apply to all PNs.

I am just frustrated. Everything you read it’s all for diabetics. I am not saying it’s not important but it makes me feel like I don’t matter. Mine is autoimmune and all the articles you pull up are for diabetics. This program sounds like it is a cream you use. When you read more on their website. Mine has moved into my organs including my heart. A cream will not help the bladder, kidneys or heart. A cream is not going to help your heart when it beats roo fast or too slow or if your blood pressure goes all over the place. My bladder problems in public I go every hour to make sure I don’t go to the restroom on myself. I just wish there was more information. I have severe axonal sensorimotor peripheral polyneuropathy, small fiber dysautonomia (where it’s moved into the organs). People don’t think about nerves being in the organs (heart, liver, pancreas, kidneys,bladder) So a cream would be great for some but for people like me a cream would not help. Yes it would take care of the foot, hands, legs and ribs. It’s frustrating when your ribs hurt really bad. Today it’s the pain in my hands. I want to cut off my hands.

The reason research targets diabetes is bc as a group they have known cause and we know symptoms will not just spontaneously disappear and they have to be able to convince FDA that the treatment caused the improvement. With idiopathic since don't know cause the regulators would reply can't say it didn't improve for some other reason. This doesnt mean the drug would not also help those with other causes including idiopathic. They have also have done some testing on chemo induced neuropathy with improvement.

Sorry Artemis,
I was dismayed regarding ointment as well (as I feel mine has affected in places not readily treatable through the skin) and not in pill form; apparently I read somewhere they had indicated that using oral meds might be too aggressive and not targeted which could cause more harm than localized on skin. Hopefully they can find a solution for the whole body and not just for diabetics. Hang in there.

Sorry! I just get really frustrated sometimes. When I was first diagnosed with this small fiber neuropathy dysautonomia along with severe axonal sensorimotor polyneuropathy the neurologist was like it’s no big deal. As an RN I knew I was being lied too. You have nerves throughout your body heart kidneys and so forth.
Then the neuropathy moved into my heart it beats too slow or too fast my BP either high or low. It’s called CAN- cardiac autonomic neuropathy they give you 8-10 years once it’s in your heart. 4 of the years have all ready gone by. I know that only God knows when you are going to die. Getting the sentence from the electrophsiologist and cardiologist.. I looked at all of them and said so you told me you can’t die from neuropathy but you’re giving me a 10 year sentence. Dr Oaklander researched this since before 2015 no medications or anything just about neuropathy it feels like some headway should have been made. Since 1966 Germany has used IV alpha lipoic acid but the pills don’t work as well. Very little if any research into this in the United States so they will not use it. It’s frustrating knowing other countries have treatments but not the US. I feel like they don’t consider it all that important.
They don’t talk about it moving into your organs because they have nerves too. They tell you after the fact.

Mine is autoimmune it’s not going to up and disappear. Had it since 2002. Since, you have nerves in your organs mine has moved into my heart, bladder and kidneys. Diagnosed with cardiac autonomic neuropathy CAN once it moves into the heart cardiologist and electrophsiologist give you 8-10 years to live. 4 of those years gone. You also have to understand my frustration at this disease. People don’t think about nerves being in your organs and they don’t realize you can die from this. My heart beats too fast or too slow. My blood pressure gets high then it bottoms out and I loose consciousness. You try googling autoimmune severe axonal peripheral neuropathy or small fiber neuropathy dysautonomia all you find is diabetic information. It is literally like we are left behind and they aka researchers don’t care. I love it when doctors say you can’t die from this until it moves into your organs then it’s a whole different story.
After awhile you get tired of people trying to justify only the diabetics matter. I have a family just like they do. My kids will be without a mother. At my four years I was told the arrhythmias have gotten a lot worse. I can’t have a pacemaker because you have to have the nervous system to pace.
This Winsantor everyone is excited about is a cream. You can’t put a cream on your organs.
It really hurts when it’s moved into your ribs..