Doctors who will prescribe Vancomycin for PSC patients

General
1

Will anyone share the names and contact information of doctors willing to prescribe Vancomycin?

I know of Dr. Kenneth Cox at Stanford, but we are in Wisconsin. I am hoping for more suggestions, although if I can get a list going here for everyone that could be a very helpful resource!

2

Hi LillyAnne,

I may be wrong, but I don't know that physicians will just freely prescribe Vancomycin for all PSC patients. It would most likely be a case by case scenario. Have you approached your physician to see if they will prescribe it to you?

I understand your interest in Vanco. I am going to Stanford in a couple of weeks as a participant in their clinical trial for Vanco. They have closed the trial, but you might think about making an appointment to discuss your situation with Dr. Shah or another doctor there. Dr. Cox only sees children. I know there is the travel expense, but your insurance may cover your consultation.

Good luck!

Becky

3

Becky -

Thanks so much, I actually started there and unfortunately the trial is, as you said, closed. I provided the information to Froedtert/Medical College of Wisconsin (who indicated they were unaware of the research). I am hopeful they will prescribe based upon that information but am figuring that will be highly unlikely. The reason I posted the way I did is because there appears to be doctors who are aware of the research but unwilling to prescribe, and doctors who are unaware of the research but potentially willing to prescribe (or some combination thereof), and then the third category of doctors actually prescribing the medication who are aware of the situation. I'm trying to narrow the field, so to speak, instead of wasting time and money educating doctor after doctor and letting the liver corrode as they figure it out.

Could you privately email me as you go? I would be so very interested in how things proceed for you! Thanks again!!!



Crewmom said:

Hi LillyAnne,

I may be wrong, but I don't know that physicians will just freely prescribe Vancomycin for all PSC patients. It would most likely be a case by case scenario. Have you approached your physician to see if they will prescribe it to you?

I understand your interest in Vanco. I am going to Stanford in a couple of weeks as a participant in their clinical trial for Vanco. They have closed the trial, but you might think about making an appointment to discuss your situation with Dr. Shah or another doctor there. Dr. Cox only sees children. I know there is the travel expense, but your insurance may cover your consultation.

Good luck!

Becky

4

It is good news that Stanford trial is finally closed for new people. It means that it will end in the near future, publishes phase 3 results and makes it easier to get prescription. FDA approval process (and insurance company policy updates) may take a year after end of this trial.
This treatment was discovered >20 years ago…been long wait…

5

I just want to say that vancomycin has been a miracle for my daughter. She is being treated by Dr. Davies who follows Dr. Cox’s protocol. She has been on vanco for a year and just had her colonoscopy, endoscopy and liver biopsy last week. Last year she was enflamed from one end to the other. A year later she has improved by 100%.
If you have PSC you should be asking/demanding vanco from your doctor. My daughter has PSC/Crohns and is doing great! Also, she is experiencing no side effects!

6

Also the vanco needs to be brand. The generic does not work!!!

7

Thanks for the update Shellie.Sounds great.
I’m about to pursue vanco too.
Can you give more details about the brand…eg is it pill form (oral), the brand name “vancomycin”?

8

Shellie -

Where does Dr. Davies practice? Are there other doctors in his practice, if you know?

Thanks!

Shellie said:

I just want to say that vancomycin has been a miracle for my daughter. She is being treated by Dr. Davies who follows Dr. Cox's protocol. She has been on vanco for a year and just had her colonoscopy, endoscopy and liver biopsy last week. Last year she was enflamed from one end to the other. A year later she has improved by 100%.
If you have PSC you should be asking/demanding vanco from your doctor. My daughter has PSC/Crohns and is doing great! Also, she is experiencing no side effects!
9

Ted -

Dr. Lindor of Mayo in Arizona, Dr. Shah at Stanford, and Dr. Cox of Stanford all seem to be good bets. I am looking for others. Dr. Lindor IS accepting new patients, the last I heard.

FYI, Froedtert of Milwaukee, WI does NOT prescribe Vanco.

Ted said:

Thanks for the update Shellie.Sounds great.
I'm about to pursue vanco too.
Can you give more details about the brand..eg is it pill form (oral), the brand name "vancomycin"?
10



Glad to see someone else with dr. davies. I have been on the medicine for a year and a half. Have all my procedures in june. Dr davies is very cut and dry. She knows what she is doing and even though she is following dr.cox's trial she has her own twist on things. Very pleasant to deal with. Even gave me her personal number to text her if need be.